There's definitely a emotional element to this thing, in my experience, if I have a good cry I feel better after. Keep going people, don't get stuck in a victum mentality. Don't let it win!
I was diagnosed about ten years ago and it mosty affects my knees. I was treated with steroid injections for several years but when they became ineffective i was put on leflunomide and then methotrexate also. After a couple of years i was told by my consultant i had to stop my medication due to side affects. So 3 years ago i went vegan and no processed food and i have been significantly better than when on medication. I now eat fish but avoid all dairy which i believe causes my inflammation. I suggest anyone with this condition to experiment with diet. Hope this helps 😊 Charlie
For me I went whole foods vegetarian but my conditioned worsened so I added protein, went gluten free, then paleo keto & now carnivore/animal based and all inflammation went away. It was all a 3 year process. I started animal based back in January. Now more carnivore. Eat a lot of fatty rare meat & avoid all lean meat. I do eggs & lots of butter/ghee/tallow. From time to time I'll have a bit of fruit but no veggies. Look at Dr. Berry, Dr. Anthony Chaffee, Dr. Philip Ovadia, Dr. Kiltz
@@11111uewfh Definitely some sort of fatty fish (like salmon or tuna - lots of Omega 3 days), one or two times a week. I usually have salmon twice and white fish three times a week (hake, cod, haddock etc...)
So once you started eating those, you noticed a difference? And if you did, how long did it take for you to notice that difference? I'm really struggling with the joint pain in my feet from it. I'm also currently significantly overweight which I need to change with diet.
The biggest thing I find suffering with PsA is the fatigue…it’s not feeling tired, it’s something off the chart tired! PsA ruined my music career, and I’ve tired every single biologic known to man, only one worked and it was incredible, but it stopped working after a year, ever since then I’ve had reactions to them, breathing issues and itching. I have an appt with the rheumatologist tomorrow morning, as I’ve been on low does steroids for nearly 3 years and now they’re causing pre osteoporosis. If I wasn’t on them I would t be able to use my hands as I’m a bicycle mechanic. Work have been very good to me. I’m a keen musician (like I said) and cyclist and I go to the gym 3 times per week, I know what you mean about lifting it helps so much. I’m currently trying no gluten and I’m on day 7 and I think it’s just a coincidence that my joints have been a bit better, I’m not very hopeful these days with it and I get what you mean when you say you don’t want to die, just not too hopeful about living. Thanks for the video man, and I hope you’re ok and keep your symptoms controlled. I think my family have had enough of me talking about it so I don’t anymore. It’s my problem I guess. All the best mate.
Hey Peter - sorry to hear about everything you've been through. It can definitely be very isolating, it's not really possible for other to understand what you're going through. I think I've got my symptoms pretty well controlled now, but it takes a lot of work - it's a full time job. Focusing on diet, walking & working out and extreme consistency. I've found lately that red light seems to help me a lot - that's something you could try if you have the means.
@peterwalsh5068 have you discussed JAK inhibitors (small molecules drug) with your rheumatologist since the biologics don't work anymore? There are also new biologics being approved over time. All the best in managing your condition. I'm a PsA patient too currently on biologics. The fatigue is still a symptom that is challenging for me (even on biologics) but it is much better managed with biologics
@@DominicWong I’ve tried them all, like I said. As far as I’m concerned they’re a load of shit. If this illness doesn’t kill you, then those drugs will.
Hi, I use the lego block analogy too, in my ankle. I have been on Biologics, Tremfya, for last 12 yrs, brilliant! Prior, i had to ‘prove’ methotrexate and 2 others were not tolerable. I developed psoriasis at 15, with “growing pains”. at 40 nearly needed cling wrap my skin to wear clothes. At 53, crumbling ankles and tendonitis are pulling me up, as are wrists, so no more cartwheels. Bone now has “moth blown effect” ready to crumble more. Exercise has been key to keep muscle tone. Good luck to all, stay strong, reach out to others. Travel while you can, Dance whenever possible.
Thanks for your honesty and straightforward explanation of PsA. I agree with a lot of what you said, sometimes it seems like looking after one's self with this disease is a full time job. I've been a fitness instructor and enthusiast for over 25 years and movement certainly helps us - don't use it, you lose it (function). There is lots of information these days out there on functional fitness over the "no pain, no gain" approach and I've altered both my mindset and what I teach to keep moving....boy do I miss running though. I do, however, take a biologic as I fear for the future, as far as mobility goes. I wish I could say I was without pain but I just manage it.
Hey, thanks for your comment. Yeah same here, I was really just getting into running it when my symptoms were getting bad. Mobility is definitely a concern - and it really is a full time job. I try to be really in tune with it, so that as soon as it slips I can look at treatment. Thankfully I can work remotely, which really helps me stay on top of my disease mgmt schedule!
Thank you for sharing this. Regarding not taking meds, I recommend keeping an eye on it, regular joint images. If you're in pain, joint damage is happening it's just a question to what degree. This disease only gets worse, people mention cancer risks for the meds but they don't mention that without meds, this disease gives us an even higher risk of cancer. Active inflammation. If someone had diabetes we would not hesitate to "depend on a med company" for it. Especially I see you play guitar. That's what's most important to me. Feeling pain in my hands, that's really scary to have a passion taken away like that. For me, sugar has been the big instigator but no other big factors I've found yet. Cut it out entirely because of how painful it makes me. They haven't been able to find a medication that works yet for me, we'll see... I've read a lot of stories and don't want to be another person who says "I wish I would've not been stubborn and taken meds 10 years ago before it was too late, now I can't move my back". I don't mean to push my agenda on you, that's an individual choice. But I would keep a very close eye on it, and be open to it. Your spine swelling... That can be quite an issue really quickly esp long term, and might be remediated if you went on a drug
Hey, thanks for the comment - really appreciate this feedback. I do bloods regularly to watch CRP, and will be following up with scans. I also do drills every day to make sure my mobility is still where it needs to be, as soon as that starts to drift and I can no longer lift properly I'll be reconsidering my approach.
I’ve been seeing a rheumatologist for 4 years now due to psoriatic arthritis. Thank you for sharing your symptoms and how you cope on a daily basis. I also don’t want to rely on medication as the side effects are scary, so I thought I would try intermittent fasting with a nutritional keto diet removing sugar and a lot of carbs from my diet and I notice if I slip up that I get really sick and stiff and the pain increases dramatically. So I totally agree that these foods have a negative impact on psoriatic arthritis. I also move daily according to how I am each morning and it does improve movement and pain… I have an elliptical strider that has been my biggest helper plus other forms of movement. I have had pain in my left knee since I was 12 and was always told it’s growing pains. I’m 54 now and I can look back over those 42 years and see all the flair ups I experienced… it’s a day to day process like all auto immune disorders but knowing your body and what it responds to and it’s limits is priceless 😊
Hey, thanks for commenting - glad you've found a way to control this. I actually want to do a video on that topic of 'slipping up' - it's such a cruel thing, where we don't get the option of a 'cheat day', slipping up can hit so hard. And 10)% agree that knowing your body is the real important bit!
I've had PA for over 30 years. About 10 years ago I was able to put it completely into remission using a restricted diet and vitamin D therapy, no meds. I have some permanent skeletal damage from it, but I'm still in remission and excellent health today.
That's really amazing to hear, thanks for sharing! Was your vitamin D therapy just supplementation or something more specific? Would love to hear a bit more about that and your diet. I've been doing really well thanks to diet and pretty strict lifestyle interventions. I still have limitations, but I can move well and train and pain levels are the lowest they've been in years. A doctor recently said to me 'whatever you're doing so working, so keep doing it' - which was great to hear.
@@walkwithkev I strongly recommend getting a comprehensive food allergy test, and eliminate all food allergies and sensitivities. I also recommend eliminating "vegetable" oils, fast food, and processed foods. I eat a moderately low-carb natural food diet. I did vitamin D therapy through sensible sun exposure and supplementation. I weaned myself off of all meds within 6 weeks of starting this. Took a couple years to get completely into remission. My vit D levels are a bit high now, so I just do sun in the summer (it's sunny where I live), and moderate supplementation in the winter. I wrote a paper about my experience and protocol, if you'd like to read it. It's free. I'm not selling anything. The paper has a lot of recommended helpful books, too.
Vegetable oils, fast food and processed food are long gone for me thankfully, and I'm whole food only - and this definitely makes a huge difference. I will definitely look into an actual food allergy test though. And will get some more vitamin D. I would definitely be interested in reading your paper if you're happy to share it!
Paulclaerhout6997 - I'd be interested in checking out your paper too! Vitamin D therapy, whatever the form, sounds intriguing as it coincides with my own findings: namely, that "phototherapy" was extremely helpful to my psoriasis.
Very helpful to hear your experiences. I am going through recent diagnosis with both skin and arthritis starting within a few months of each other. Overwhelming transition of decisions and difficulties of going through medical world. Thanks for your information.
It was twenty years before I was diagnosed with psoriatic arthritis and ankylosing spondylitis. The diseases have progressed to the point where I'm now in a motorized wheelchair. I can walk a very short distance with use of canes, or walker, but the worst of it is the chronic pain and weakness. I'm on a biologic which has helped immensely, my entire body no longer aches. No, it doesn't eliminate all the pain nor the progressive joint damage. Everything I handled I end up, dropping it on the floor now. The cost of the biologic is insane if you are not on an assistance program or have insurance to pay for them you are screwed. I don't like biologics due to the cost and potential side effects. I know I'm rambling. It's a horrible disease. It's terribly misunderstood, especially within the medical field. I try not to eat processed foods and drink a lot of water. Sugar is poison. I wouldn't wish these diseases on anyone. Advice, travel while you still can see the world.
This is the best informational video on Psoriatic Arithritis I’ve ever seen. 😢 I am 63 year old woman and took about 20 years to get my diagnoses. The doctors kept treating my nails for fungal infection. Very sore.
I've had psoriatic arthritis for 3 years. Crippled me. Been on Amgevita for 4 weeks now and it's already making a massive difference. I lived on Prednisolone before that to make work and live some kind of life. If you have mild PA fair enough, walk and diet etc is good and highly recommend, but if your symptoms are bad, don't mess about, get on the biologics. The only side effects I get is fatigue for a few days after injection. Life changing.
I love when you say " I cannot live without thinking" . That's it. I totally get that. I have to think out my whole day on a micro level. I have to figure out how many hours of activity I can get away with before I run out of steam. I have to figure out what my movements will be. High curbs on streets are a problem for me. I know how that sounds but it is true. Sugar is a SUPER DEMON for me. No doubt. I have done a test on this and it was so obvious. Terrible. Also, fasting is a gem for me to..........I loved this video and I gleaned so much good advice from it. Thank you very much! God bless you and I wish you the most productive life you can possibly have. Lots of love from Texas!❤
I have be diagnosed with PsA runs in family but I have been in pain for more 25 years. I got guttate psoriasis after the COVID vaccine. Which was my trigger as it runs in my family. I daughter now has back back pain. I she doesn't follow my footsteps.
Awesome video. Been living with psoriasis for last 20 years and for the first time ever I think it’s evolved into psoriatic arthritis. Trying to learn as much as I can. Thank you so much for being honest and transparent and taking to the time to make a super informative video. It’s cathartic to hear other people’s stories of living with this disease.
Thank you so much for sharing this, I am much older , I have had joint pain since I was in my twenties, same things you described. I developed psoriasis later on in my life. I have taken many medications, they helped for a while , but then quit working. Listening to you made me realize that I have psoriatic arthritis. One thing I always did was exercise and made sure I did not gain weight. So thanks again now after all these years I know what my problem is.
Thank you so much i really appreciate your vlog. I have psoriatic arthritis. It hurts me all day everyday whatever I'm doing. I inject biologicals so without them I would probably be in a far worse state. Recently I decided to change my diet and my psoriasis is so much better! My exposed arms are no longer an embarrassment. All I have eaten for almost 3 months is chicken, fish, eggs, nuts, cheese, olive oil, grass fed cows butter and mostly organic vegetables like kale broccoli and cauliflower. I have blueberries and strawberries for dessert. Honestly it's been amazing! My scalp is clear which was dreadful. The only thing is that the chronic aching hasnt improved as yet. I dont know anyone else with this disease and I couldn't find any face to face groups so as to meet others and chat and get to see what people do to cope with getting out of bed in the morning etc so thank you. I have just subscribed 😊
You are more than welcome, and thanks for watching/subscribing! I'm really glad to hear you've seen improvements to your psoriasis! In terms of the chronic aching, I think it's important to move as much as you can. What you can do will be different for everyone, but if you can manage a couple of 10 minute walks each day, that would be great. Some very gentle yoga would be great too. Resistance bands are also a great option for working on strength and mobility. It's important to start to understand your body and what sort of stiffness you can safely move through vs. when you need to take it easy. Also, if you're not already, it's probably a good idea to find a good fish oil supplement and start taking that. There are other supplements we could talk about too, but I think fish oil is the most important one.
I have had psoriasis since I was five years old. I have had plaque psoriasis on my scalp, forehead, ears, eyebrows, belly button and now on my elbows and knees, Doctors call my psoriasis mild. I have had the eye inflammation 3 times and my nails have been affected for years and my back since my 20's. For the last 2 years my feet are in agony standing, walking are difficult and I cannot even tie a shoe over my right foot due to the pain. Apparently Australian doctors cannot make the connection to PA and I have had to ask directly for a referral to a Rheumatologist as I know this is what Iam suffering from.
Thanks for sharing your story.It's such an honest and emotional testimony.Only those who live with a chronic degenerative autoimmune disease which is so painful,invalidating and exhausting understand how cruel these heartless diseases are.Nobody understands us since they are invisible diseases to the rest.I suffer from AS which shares a lot of symptoms with your disease and I'm still fighting to Accept my reality.it has stolen my whole Life: social life, family life, sport life,sexual life,sentimental life,....everything. Keep Up your strength and keep up surviving!!
Hey, thanks for commenting, and so sorry to hear about your struggles. I know a couple of people with AS, and it is really awful. I think acceptance is a really important part of the fight - keep your head up and keep going. Get to really know your body, and I'm sure you'll find something that will help you, probably not a cure - something something that helps you feel better. Feel free to reach out if you ever need support, or just someone to talk to.
Just shows how life quality can be improved with the lifestyle choices you use.👍 I've always had chronic back pain and scalp psoriasis, some joint pain. Bloods ok, though have ms. No joint swelling though so not sure if I have it. Is joint swelling a main feature for you? I think you say in the video you did have this. I think in AS which often affects the back it might be seen on a scan/xray.
I’ve been dealing with symptoms, to differing degrees, since high school. I’m now 41 and I just felt relief finally knowing what’s really wrong with me.
Hi Kev, I'm just realizing that I may have this. Thank you for your thoughts. I've been suffering from various symptoms for years. The doctor says to me you have a bad back, go to the physio and nearly die with the pain. Years and years of cortisone injections into my joints, elbows heels, and spine. Works for a while but then back to square one. All what you describe I feel. The worst is getting out of a chair or car. Walking is a nightmare. I'm definitely going to the doctor and getting tested. Family history of arthritis in various forms. It's going to be a game-changer for me. Thank you so much.
Hi Olive - you are more than welcome, and I'm so sorry to hear about your suffering! But understanding more about what is going on is definitely a silver lining and will really help you in your battle against it. Best of luck, there is a lot you can do to fight this and live an active fulfilled life!
Thank you! I’m in the metal state of serious skin condition with hair loss as well, the joint pain is unreal in my hands especially in the morning. Everything you spoke was so genuine and I’m going through the motions it’s something very new. I’ve been diagnosed at 65 and I’m very young at heart with a healthy body that is in a lot of pain lately scary thank you for your honesty input.
Hey, sorry to hear that - but glad to hear you're feeling young at heart and healthy, that definitely helps a lot! Chronic pain really does mess with your mind, so mindset is an important thing to think about. I mentioned on another video that I find the morning pain is lessened a little bit if I try to avoid eating in the 2-3 hours before bed.
Another big clue for whether you have psoriatic or rheumatoid arthritis is symmetry. Rheumatoid Arthritis tends to present symmetrically along the axis of the body - both hands, both knees, etc. Psoriatic Arthritis tends to present asymmetrically - for example: left hand, left elbow, left ankle...but not on the right side.
Sounds like another name lumping symptoms of Mast Cell Activation of connective tissue disease such as Hyper-mobile Ehlers Danlos Syndrome. Flexible due to the degranulation of the tissues, vessels, tendons from a mast cell flare gone rogue into autoimmune. This degranulation of the mast cells permeates the tissues through all the system..: systemic response. This causes permeability issues between the blood brain gut organ vessel tendon barrier walls of protection. This leads to the things that enter our body dynamic through skin, ingestion, breathing, virals, bacterial, a stress inflammation response to due to trauma or injury or surgery or long term stress will all activate the mast cells into a flare. The mast cells remember what causes or what is within during a flare and codes it for future flare response to um… save the host? And pushes symptoms of pain and inflammation to ward off the threat of um… chocolate or any histidine producing agent or whatever protein it has identified as a threat and looks for like being ingested or applied or breathed in and goes like a gangsta to attack. Inflammation. Yet due to permeability issues due to degranulation these are now transferring from the blood and gut and kidney and bladder tissues into the bones, tendons, tissues through the body and brain. And it sends inflammation cytokine storms into these areas to kill off ehe invader that is just a chocolate Easter bunny. Not fun or funny. Just my opinion take. Just another name for the same game of Mast Cell Activation… where the idiom “on steroids” is actually what is necessary to mediate yet not a good long term solution. Yes…. Your six area protocol can be instrumental to management. Yet isn’t a cure. Avoidance and fasting and very conscientious supported micro management exercise every day all day is exhausting vs just living without undue cumbrance and soldier level discipline which reminds the brain and body it must be kn hyper alert ever ready for threat and attack. Never rest soldier. Train, don’t indulge, don’t let down the guard at the gate least we die. Maybe try some mast cell stabilizers and pray there is not a negative mast cell response to them and see what happens. Good luck and thank you. I walk least I can’t move ever again. It consumes my life. I eat almost nothing because of flares and lace and brace and move and breath with continuous thought and well… it’s an exhausting unpaid full time job. “But you look healthy” No. Healthy to me today looks like fat and happy and pain free sitting in a sofa eating whatever comes my way watching old reruns and still feeling good enough to get up and waltz through Walmart on the way to Disney like so many do and don’t feel pain. Real. I would prefer to be fit and healthy and pain free and eat a healthy diet with all the healthy organic plant based foods and do any old fad of diet and exercise Pilate queen jazzercise granny out there… but no… that all leads to pain not gain. So I walk and fast and avoid and try try try to be accepting and thankful for what I can do vs what I can’t. But that takes a whole lot of constant conscious effort and thought and it’s exhausting. Keep on walking Keep on smiling 😊
How are you doing nowadays? Thank you for sharing your experience with this awful illness, ive had it around 20 years (since my mid 20s) and live in Scotland, so not too far from you. It started in my sacrum, now my entire body is screwed as i refused DMARDS and biologics out of fear. Ive had to give in in the past couple of years and run the gamit of meds so now starting methotrexate injections today, and if they dont work its on to biologics. Already trued the tabs ehich made me ill and sulphasalazine with turns out im allergic to lol. I had nail pitting and psoriasis as a teen, and always sore legs. Had to chick work aged thirty when i was diagnosed as it was a very active job. Ive had to use a walking stick for ten years, i get funny looks as im a bit "emo", still look relativley young, but cant walk very well. Its hereditary in my family unfortunately, my teenage daughter has psoriasis so im fearing for her. I have screwed up discs too. Great fun. Have you done any more recent videos on how you are now? Hope things are ok, sending healing vibes 😊
Im waiting for my first rheumatologist appointment. Hip pain has brought me into the doctors office over and over for years. I thought i just had tight IT bands from running. The pain and stiffness is worse in the morning and better with movement. I have also started to have other symptoms such as dry eye, jaw pain, finger joint swelling, low grade fever, feeling like i have the flu, fatigue, etc. My doctor repeated the tests for RA she did years ago and this time around it was positive for R factor. It's my understanding that PsA doesn't usually test positive for R factor, but RA does. However, I think my symptoms are closer to PsA than RA. I also have scalp psoriasis. I have been trying to research othe people's experiences with pain, symptoms, onset etc and compare them to mine before my appointment so I know what symptoms i have that are relevant to help me get an accurate diagnosis.Thank you for making this video, it really helped.
Hey, thanks for commenting - and sorry to hear about your struggles with pain and getting a diagnosis. This is a prime example of why people struggle so much with diagnosis, the symptoms can be really inconsistent. Either way I think the self management techniques I talk about on the channel will help as you navigate your way through this. I wish you all the best in your journey.
One thing you did not touch on is that PHriatic arthritis is not curable I went from one drug to another drug on and on Eventually I quit I'm 76 years old and I'll do the best I can with God's help thank you for sharing
Hi, thanks for commenting - yeah that's a good point, and something that is important to remember. If you are self managing a condition like this it's easy to start blaming yourself for your flare ups, which is not healthy. It's also easy to slip up in your routines because you're feeling good (I talked about this in my video about discipline). Important to remember that it will always be there.
Hiya Kev. What a great video for those who may be questioning pain they are feeling. 18 mths of hellish pain after giving birth (got septic blood infection in hospital, icu for 4 days, hospital for 1 month, wheelchair for 11 mths had to learn how to walk) and many tests showing nothing wrong yet feeling extreme pain in SI joints, finally a Rheumatologist found my SI joints were a mess and diagnosed me with Psoriatic Spondylosis Arthritis. Today, 21 yrs later, my back, knees, eyes are also being attacked. There are no longer days of no pain, it's constant and draining. Tomorrow I'm off to see an Exercise Physiologist to see if they can help as it's truly becoming so unbearable. It's hard finding ppl who understand this awful disease, especially ppl who understand chronic pain, extreme fatigue and utter frustration. Anyway, enough of my rambling. Thank you for bringing more awareness and encouraging ppl to never give up when seeking the truth. My body is now a mess due to ppl not listening back then as PsA was quite uncommon and can take a few years of pain and suffering before it shows up on imaging (some Drs even thinking you're a hypochondriac as imaging was ok). They tried every type of medicine to slow it down but unfortunately, this is impossible for Psoriatic Spondylosis Arthritis. It was very hard trying to raise my daughter while going through this, but I did. She's now 21 and I'm hoping to get help from this Exercise Physiologist tomorrow. I'm needing an Mri of my upper spine now as pain is extreme near T9-12 but it has to wait as they are $400. Our health system makes it hard for so many to get answers. Anyway, thank you again. For those suffering, stay strong and I'm sending you all a hug.... just incase you needed one.
Hey, thanks for your comment and I'm sorry to hear about all you've been through. Hopefully you can find a program that works for you to find some relief! It really is so difficult to communicate pain and impact of chronic pain.
@walkwithkev so true Kev. I just remember that there are others out there far worse off, at least I can still walk, for now. I hope that you are doing ok. Sending hugs
Thanks so much for this video testimony. Wow...your PsA journey sounds so much like mine. I started to post a longer response but didn't want to wear you out. It is such a blessing knowing we are not alone in this journey!
Mine began with an event that caused me to have a PTSD for three months then the itchy back of head arose. It’s all progressed from there to lower back, shoulder, both thumbs and top of foot on left then right big toe!!! It’s been diagnosed as Osteoarthritis. I think I need to see a a Specialist.
Hey - sorry to hear that. It's interesting, my psoriasis started to really come through around the period I started a more stressful job (I was putting in a lot of hours), and pain became more consistent. I've definitely noticed that stress contributes to flare ups in both skin and joints. I think you should definitely see a specialist.
I am going through it all right now. The pointlessness feeling phase, the realization that i'm gonna live with this forever, the struggle to quit smoking, the craving for chocolate. Thank you for this.
Giving up smoking is really tough - but you can definitely do it and you will be so glad you did! Best of luck in your journey, you can definitely find some meaning out there - but it's going to take a bit of searching.
I also suffer from Psoriatic arthritis but for me its mostly in my knees, elbows, and fingers. I too decided against biologics. Recently I've had so many people trying to push me into taking the biologics. It's very frustrating because I genuinely have a horrible feeling about the medications and its a constant nagging to take them everytime these people aee my skin. Thank you for the video, I can totally relate to your story. Much love 🙏
Hey - happy to be able to help, and I hope you are doing ok, managing this disease can be tough. I did another video recently about why I don't take the medication you might find interesting - just want to be clear that I think in some cases the biologics are needed and life changing, I'd hate to see someone do real damage to themselves by not taking them.
I feel the same way about the meds too especially the immunosuppressive ones, and I totally understand. It's scary, and when I'm on the meds I feel alot worse
This video is very helpful. I’m terms of diet, how do you think about added sugars? You mentioned the Easter chocolate caused an issue, but do you generally avoid altogether or how you found a level of moderation that works for you?
Hey, thanks for commenting. Lately I've tried to avoid sugar entirely - but I've found that small amounts are ok. For example, a couple of squares of dark chocolate after dinner will be fine. I actually suspect that blood sugar spikes are where the serious problems are - and plan on getting a blood glucose monitor to test this out. The Easter chocolate binge I mentioned was probably around 50g of sugar in one sitting, so I'd almost expect that to cause problems for anyone! That is to be avoided at all costs. But 5g a couple of times a day, especially with fibre/protein to avoid the blood sugar spike is where I'm leaning these days.
@@walkwithkev The blood glucose monitor is an excellent idea. I used one to reverse my type 2 diabetes 3 years ago. By restricting carbohydrates, my symptoms went away without using insulin or other medication. One benefit of restricting carbohydrates is that it eliminated the inflamation in my joints. Years ago I had to quit playing tennis because my shoulders hurt every time I swung the racket. I gave up exercise of any type because of the pain. But the pain disappeared after 3 or 4 months of restricting carbohydrates. Since then I have seen hundreds of other diabetics who had various types of arthritis comment that their arthritis symptoms disappeared after getting rid of the sugar in their diet. ua-cam.com/video/nj52yEUaFfA/v-deo.html
The trouble with PsA is that it oftrn doesn't show up on tests............If treated early you can avoid damage and pain.................but doctors just do nothing until you present with really bad joint damage
Agreed - I'm not going to be negative towards doctors, but I think it highlights the importance of being an active manager of your own health learning more about your own body.
Thanks for such a descriptive journey. I was diagnosed at 32 (3months ago) very quickly since my psa is severe and signs were obvious. Had to start mtx high doses because there wasn’t time for experimenting with diet and exercises but I fully support this kind of lifestyle changes if symptoms are mild and the one can go without meds. Acceptance is something that i still deal with it. You’ve mentioned it. It is like it is, this is reality, these are your given cards and we have to move forward. Btw i am also sw eng as you. Cheers
Hey - thanks for the comment. I think when it comes to diet and exercise, I always say that it's important to do anyway. Take the medication as needed - but it's probably not a good idea to rely on just the medication. The meds will be more effective when combined with the lifestyle changes, and the lifestyle changes will be there if the meds start to fade for whatever reason. Stay strong (and keep coding :) )!
Hi Kev. You are perfectly describing how I feel. It's in my hip, too, and my right toes. I ride horses at a very competitive level, but this won't last, I think.😢 I will follow you. Greetings from Mexico City and thank you so much for your channel.
My journey is taking a very long road. After 15 years I saw a newly qualified Rheumatologist of whom spent 3 hours going through all my notes. She was 99% sure it was Psoriatic Arthritis. I was then referred to the head Rheumatologist who as soon as I went in said she hadn't had time to look at my notes (15 years of them) and handed me some leaflets on Fibromyalgia and told me to go and get better. I was so gobsmacked I couldn't get any words out. I had already had Fybro ruled out 5 years previous (In my notes). This was the tail end of 2019. 2020 arrived with Covid and I have not managed to have been referred since. There was a gentleman doing some training who sat in and he looked as shocked as I was. I did manage to get the Fybro diagnosis removed when I got a follow up call about 6 months later and the specialist was also shocked with the total lack of care and misdiagnosis. Slowly getting worse and mobility poor along with the knock-out fatigue. Sending hugs!
It's crazy how often I hear this from other people, it can take so long, with so much pain along the way, to find answers. It's such a shame that there is a large element of luck within the medical system. It might takes years before you find yourself in front of someone that can help. I really hope you can find some relief - the feeling of getting progressively worse is awful.
Hi, subbed, great to find a video from a guy living it, as opposed to an MD treating it or a Pharma selling a drug. PLEASE mic up! Your audio is all over, :). I was told I had osteoarthritis 15 years ago, gout, sciatica, 3 stage 4 degenerative discs. So a bunch. I recently 1/2024 saw my derm & think I have nail psoriasis, so backwards, whatever. So now, back to my rheumatologist (who IMO, was supposed to be the one telling ME, to tell HER to test & treat me for PSA. I am doing ALL/ALL the other stuff especially the gym (every friggin day) so I am doing my part. I am not at all hesitant to try any drugs that'll slow/stop it while I am still mobile. Will binge on your other videos & look forward to more. I am 76 so the chit came later for me but still not fun. Froggy.
Hey Froggy - thanks for your comments. Hopefully the newer videos sound better - I had a bunch of issues recording this one and the mic I was meant to be recording on actually failed but I didn't realise, so had to fall back to camera mic, which sucks, but didn't want to re-record because most of it was off the cuff. Glad to hear you're attacking the condition - hopefully you can get a handle on it!
Thank you for posting this video. I was diagnosed with psoriasis a couple years ago after a few years of doctors saying I had seborrheic dermatitis. Now that I’ve looked into psoriasis I believe I have psoriatic arthritis. I’ve had that moving Lego feeling in my knees for 10 years but I thought it was just because I played every sport imaginable from age 5 through my 20s and might have torn something but didn’t notice. I believed skateboarding & football to be the main reason for my knee issues. But now I have issues with my lower back, shoulders, elbow joints, knees, toes, nail beds. And I’ve never injured any of these areas playing any sports. I’m 30 now and my body, mainly my joints, have aged worse than my fathers
Hey, thanks for your comment - sounds like it's definitely worth getting some bloods done. Skating and football will cause wear and tear, but not that much, especially if not doing it at an elite level. Figuring this out is half the battle, once you've done that you can really tackle it.
Can if also cause Crohn's disease , only because i am taking Ustekinumab biologic,P2Y enzyme , Acetylcholine , Sugar insulin resistance, Solanaceae plants Nightshade plants bad .NAFLD as well, this just my limited knowledge but it seems , Sugar and carbs, plus the Nightshade plants , blocks Acetylcholine at the synapse messenger causing inflammation
I'm not really qualified to speak on this - I believe Crohns is also an inflammatory condition, so it wouldn't surprise me if it had some common factors. Personally I haven't found nightshades to be a problem, but everyone is so different - which is why I advocate more for setting a solid base (real food & exercise) and adjust as needed for yourself.
Regarding walking... to reduce pain do not heal- toe... bend knees slightly to lower center of gravity and walk like a child on the area below your toes and do not pound heels. Heels can lightly touch but no pressure. This way of walking ( Chi Walking) will be less painful. Barefoot walking (weight forward /no heel strike). as much as possible helps too.
Thanks ..I just learned I have that . Sausage toe my doctor called it ..Never heard that term before But I'm not alone, it is nice to know .. I'm not crazy Well, it is what it is Got to learn the best way to live a good life as possible
Best of luck - and you are definitely not alone! Lots of great online resources. Also - I'm a certified 'Self management' course leader (from the Self Management Resource Centre). It's worth searching for them and seeing if there are any courses being run in your area, it could be of great help to you. Other than that - I hope some of my videos can help.
I have done a few elimination diets and carnivore definitely works best for me. I can be comfortable enough with a limited elimination-type diet but carnivore brings me such a wide range of mobility that is worth it. It is super restrictive but in time, I feel I get more and more used to it. I went twenty years in discomfort, three on meds, and now 11 years medication free with occasional flares if I stray from my diet. I was also that person who reacted to the covid vaccine so it came on strong two years ago, with one shot, and I am finally feeling better. I think this is due to carnivore as it is pretty new to me.
I'm glad you've found something that works for you! I've heard a lot of similar reports from the carnivore diet - sounds like there's definitely something to it, interested to see how it works out long term. One thing is definitely clear - diet has a huge impact! What that diet looks like will probably vary from person to person, which is why it's so important to figure out what works for you
Hi Janet, carnivore seems to be working best for me as well. The stricter I am with it the less inflammation and pain, I’ve gotten to zero pain… I find that adding garlic and leeks and some healthy greens like steamed kale and raw arugula, etc. don’t bother me. Which is great I like to keep my market biome Microbiome as healthy as possible, of course. My challenges were deleting cream in my coffee, and I should delete coffee. Also getting rid of all the wonderful carbs. I am very thin so I could really do some dairy and carbs and terms of poundage. But in terms of inflammation, nope, not in the books. Thank you for your comment.
Physical exercise type depends greatly on other diagnoses ie osteoporosis, where excessive weight lifting can be disastrous, age, (I am 81, and live alone), dx. of colitis (IBD), not allowing tolerance of most green vegetables and fruits with roughage, spinal involvement not permitting movement tolerance to more than 10 minutes duration. I really appreciate this video, though, and really try to work around all my limitations, and agree on avoiding foods causing worsening of inflammation. I have eliminated gluten and nightshades recently and find that helpful. Thank you. I hope to view more of your material.
I've done another video specifically around exercises and Arthritis (and will do another one soon). Whenever I talk about movement and exercise it's all relative. What's important is to do what *you* can. Move as much as *you* can. The movement you are doing matters less than the fact that you are moving. If that is ten 1 minute walks - then that's great, do that. If it's sitting in a chair just moving limbs, that's great too - there is a lot you can do from a chair. Best of luck - and glad you hear you are tackling this head on!
Thankyou. I am going through first rheumatology blood screen. He said to look up Psoriatic Enthesitis and synovitis too. Heel pain so painful for 8months had cortisone which made it worse. Elbow surgery...didn't really help, both knees, hips. Can't go to the gym because of the heel. Even walking for a while increases pain. Ice ice ice.Back pain.....2 crushed vertebrae. Used to love lifting weights but the joints always so much more painful. Hope to get some answers soon. Over stretching. Was very flexible once upon a time 😢 Thanks for your inspiring story.❤
Hey, thanks for your comment. Sorry to hear about your struggles - hopefully you have some answers soon! I know you'll be able to get control of this, but there will probably be a bunch of pain and learning first.
Thank you for that informative video..I didn’t think that i could watch a 40 mins video till the end until i watched your video 😅😂 You gave me hope about dealing with psoriasis arthritis..i was diagnosed with psoriasis (scalp psoriasis ) about 10 years ago .. psoriasis arthritis symptoms started about 3 years ago after i had corona virus .. docotors couldn’t diagnose the disease and gave me a long course of anti inflammatory drugs as ibuprofen but seems like nothing was working.. the major pain is in my upper back and neck (very stiff) the pain is worse when i wake up as you described..now i started to feel pain in my left knee and right elbow So, as a pharmacist i’m sure now that it is psoriasis arthritis ..I’m thinking the same about having biologics as humira because of the serious side effects Now i’m trying an elimination diet (as i felt better while being on it before) And i’m going to follow your advice about walking and lifting ..hope it helps I’m studying nutrition diploma this year so i think we would have things in common 😅 Thank you again for your informative video ❤ i have just subscribed your channel Greetings from Egypt 🥰🥰
Hey, thanks for commenting - I've always wanted to go to Egypt! Sorry to hear about your pain and troubles. Neck pain is awful, it can really cause severe limitations in your life. I hope you find some relief in lifestyle interventions! Diet and movement have been so huge for me, I really hope it's the same for you. Feel free to reach out any time.
Very interesting. Thank you for sharing. I've tried all the dmards and 2 biologicsls. Unfortunately all had horrendous side effects with no remission of symptoms. I too have back (sacroiliac joint) damage. I've had two partial knee replacements. Both shoulders are very damaged. Injections into shoulders helped for a bit. I lost all my toenails and experience severe tendonitis. Both my rheumatologist and myself have decided against any more meds...they were horrendous! Diet certainly makes a difference. Sugar is a complete disaster for me. I mostly eat meat, eggs and fish. I'm planning on swimming. I've learned to rest when I need to. I have cold bath when things are really inflamed. It helps. Exhaustion is still an issue. Things are better than three years ago, but i still get pain and stiffness. I think with continued diet and life changes things will continue to improve. It's important not to give up hope. Some joints are already damaged, not much I can do about that. I do also take some supplements. 😊
Your experience sounds really rough - sorry to hear that. Glad to hear you're finding some stuff that works for you though. "I've learned to rest when I need to." - I think this is a really key point. One of the most important 'arthritis skills' for me is understanding your body. Like, when you should move in spite of pain, because it will help you feel better vs when to stop and rest. When food is causing you problems vs. when it is helping. etc... Something I always say is that your disease is not your doctor's responsibility, it's yours - which is why learning as much as possible about it and about yourself is so critical.
I am a surgeon and was extremely enthusiastic about my profession .But I suffered fatigue multiple migratory big joint pains off and on and had severe low backache .No one diagnosed precisely what I had.I was put on vit D and calcium supplements along with painkillers.with the passage of time pain was aggravated and some suggested me to consult psychiatrist even.However at the age of 50 I was diagnosed as psoriatic arthritis.I had not a single painfree night and I think pain is the part of my life inspite of taking DMARD and knowing their side effects too.I left surgery which was my dream . Although I am earning well but not with my beloved profession.
Hey - so sorry to hear about your challenges, it's really frustrating how long a diagnosis can take when there is so much that can be done with an early diagnosis. It's terrible that you can no longer perform surgeries, I hope you manage to find meaning elsewhere.
I was diagnosed 7 years ago when I finally had psoriasis on my arms. It was stress induced and disappeared with a few uses of a topical steroid. PsA did not disappear. I had at least 5 years of no diagnosis, just pain with no relief. Thank you for being so open about your journey. This disease is not for sissies. You've inspired me to walk again. I'm hoping it will help me deal with the fatigue which has become worse. Sun is out today which always helps.
Thanks for sharing. I too have been diagnosed with psoriatic arthritis. I have the spots on my elbows and knees. Joint pain in my hands, one knee and one elbow. Most of my stiffness and pain are in the morning and is relieved by movement. Flair-ups are a pain. Thanks again for the video.
I was meant to see this!!!! I have been dealing with this for many years. Your car it cute and my husband calls me Mona. Lol. You encouraged me to be assertive with my diagnosis
Terrific job of laying out psoriatic arthritis in layman’s terms while still being highly informative! (Also, good call on the Social Distortion shirt!)
No serious damage that I know of - I'm still very mobile and pretty strong (I have a strength training video you can watch to see how I approach that: ua-cam.com/video/nQq6O5wKPhk/v-deo.html). I think my main area of concern at the moment is my wrist and my right big toe - both can get pretty inflamed and sore, and my toe is swollen, so I'm looking into cortisone injections there and maybe getting a scan done, and spend a lot of time doing mobility work on them. I had some bloods done recently and my CRP (c-reactive protein - inflammatory markers) level was at 8, where below 5 is desirable, but 8 is still pretty low considering I have psoriasis/arthritis - so that is my main focus. On your second questions, I used to drink regularly (like a couple of times a week every week), but not so much any more, maybe once every couple of months I'll have a couple of drinks. I've found that if I drink, especially heavy, I feel worse a couple of days later. So the day after I can feel great (other than a hang over) but the next day can be rough in terms of stiffness. That can also be because I tend to make poorer food choices during and after drinking.
I have taken some psychedelics (mushrooms), but I wouldn't say it was to treat autoimmune disease. Though it definitely did provide temporary relief. For a few hours my mind felt like it was floating outside of my body - I had zero awareness of any physical issues I have. I would say the last time I had them was the last time that I felt no arthritis pain/discomfort. But I don't see it as a long term, ongoing treatment option.
Thanks Kev, my 17yr old daughter was diagnosed with the disease last week and despite being told not to Google by the consultant, I've been researching. Her thumb and foot have been very painful over the last 6 months. She's had difficulty writing during her AS level exams just before breaking up for summer. She's just started medication, Methotrexate, and some of the potential side effects are hair loss. I'd like to think that strength training and diet can help her and I took inspiration from your content. We were in the garage painting for 10 hours yesterday in preparation for the arrival of a squat rack, bench and air bike. Thank you.🙏
Finding the support from family snd friends has been a big hurdle most have not a clue what it is nor do they want yo know lol that’s about the time I do wish this condition on others of course just for a day
This is a real struggle - it really incredibly hard for people to understand what it's like, not just the pain but how the pain twists and distorts your thinking, making everything more difficult. Though not sure I'd wish it on anyone, even for a day :)
Hey, thanks for commenting. It sounds like you have actually damage done to the joint so this makes sense. With inflammatory arthritis movement really helps alleviate pain and fight symptoms, but with osteo the damage is done, so you need to think a little differently about it. Like consider walking in a swimming pool to get some movement in, but without the added pressure on the joint.
@walkwithkev What happened to my knee has confused me. I don't know what to do. I don't want to be crippled. I was just walking down the stairs in my home and my knee just crused. I can't tell you how bad it hurt. I was taken to the hospital. What really upsets me is medical people don't know very much about it. I was in severe pain trying to tell them about psoriasis and PSA.
After a couple years of being told I have plantar fasciitis. Physical therapy, steroid injections, an MRI and x ray. Finally was told i would be starting methotrexate. I didn’t believe them because i have such a small psoriasis spot. Now my wrists flare up, and one of my fingers gets pain.
Thank you for sharing your experience with PsA. My boyfriend got diagnosed last week and we were constantly in fear and anxieties. Hearing your experiences and how you dealt with it is giving us courage to battle the PsA with a renewed mindset. Wishing you all a better health.
HLA-B27 positive with psoriasis diagnosis since high school, 40+ years ago, with arthritis, nail changes, inflammatory bowel disease, etc.. I also have Ankylosing Spondylitis requiring surgical fusion. Trust your own instincts, I presented atypical and now I need surgical fusion.
Hey, thanks for commenting and sorry to hear about your struggles. I've been trying to trust instincts, but stay informed by data (ie. blood tests). As I've said elsewhere, it's a full time job - but I'm pretty determined.
So glad i came across your video. Ive suffered with psoriasis for 15 years now on both knees and shin/calf areas, both elbows and scalp. This last 12 to 18months my pain and joint discomfort throughout my body has become much worse and extreme tiredness. I have recently had blood test for inflammation, Rheumatoid arthritis and full blood count all of which have been normal. A visit to a consultant resulted in a diagnosis of osteoarthritis but it seems much more than that to me.After speaking with My GP and a Physio my next step is to return to Musculoskeletal , its been 3 years since my last visit where they found bulging discs and facet joint arthritis. This condition is so debilitating its unreal and your video just confirms how i feel but getting that diagnosis is like jumping hurdles its so difficult.
My opinion is that it's more than just correlation. Anecdotally I've found that when my digestion is good, and I'm eating a lot of plant fibre (broccoli, green beans, leafy greens) I feel a lot better. And we know that heavily processed food is bad for the micro biome, and I definitely feel a lot worse if I'm eating a lot of heavily processed foods. There an interesting Huberman Lab podcast about the biome, and this expert Dr. Justin Sonnenburg (ua-cam.com/video/ouCWNRvPk20/v-deo.html) shares that the microbiome is critical for immune system function. PsA is considered an auto immune condition, so there is a connection there. In general, the more diversity in the biome the better, which includes managing inflammation. There is also this idea of 'leaky gut', which is where something called 'tight junctions' in your gut, which allow for nutrient absorption, break down - allowing larger particles through, which then triggers the immune system. Eating fibre will result in the creation of short chain fatty acids by gut bacteria that will help maintain them (ua-cam.com/video/mxIH1nrfsbc/v-deo.html). To try and answer your question, I believe that we are a hugely complex system made up of many complex sub-systems. We can't just think of things in isolation, it's all connected. Some research seems to suggest that gut health even has an impact on mental health, which could result in increased anxiety, which increases stress, which causes inflammation. I know that my psoriasis feels worse when I'm stressed. So gut health to me in hugely important - and it makes sense, because it's a vital system that is very much an integral part of the whole bigger system. It's where we get the building blocks of our bodies (nutrients, proteins etc...) - you literally are what you eat.
I'm in the midst of a flare-up now. My eyes feel very dry and my knees are really sort. I've been a runner for 12 years. I've done some really long events. I still get out for a run but none of the experience is pain free. I feel like I'm lugging around old bones. The funny thing is about three years ago when I was running, I'd go through the pain because I thought this is self inflicted - this is the "right type of arthritis." I thought my knees being sore was a badge of honour from long events. Now since I have my diagnosis I just realise my knees ache all the bloody time.
I know i have this type of arthritis, suffering tremendously but doctors couldn't ditect it , they are relying more on tests not on symptoms and the history i want to share. Seeking help from one specialist to another and going through tests after tests. Your video shows me ray of hope. Many thanks and if you suggest anything for me, thinking about going back to rheumatologist or Arthritis clinic , totally confused.
The main blood test I had was a CRP (C-Reactive protein) test, which is an inflammation marker - but it can be misleading. I also had an MRI, this confirmed inflammation in my spine and SI joint. I think it's definitely worth getting another opinion. I also think it's really important to communicate symptoms and triggers very clearly. With psoriatic arthritis, some of the main indicators are going to be: Pain that eases with movement and gets worse with rest, psoriasis, pitted nails, fatigue, pain that is worse in the morning and eases through the day. Pay attention to these things, maybe keep a diary, see if you can be precise and notice patterns.
Good informative video… found you on Reddit. I’m undiagnosed but trying to get it. So, you don’t take any meds? Just the walk, wat, breathe, lift, move and flex?
Thanks, No I don't take anything, other than the odd anti-inflammatory pill (ibuprofen), but I try to avoid them unless I'm particularly stiff/sore and focus entirely on lifestyle interventions. I also take CBD oil - which I've found helps, and cold showers too. So: walk, diet, lift weights, mobility/flexibility work, breath work (for power and for relaxation) and trying to sleep well.
@@TechRevivalist Glad to hear it - also important to remember that not all meds work for all people and that their effectiveness can wane over time - so it's good to try and practice this stuff regardless.
I was diagnosed with PsA in 2022 and started on Humira. (Now on MTX and Enbrel). However, my first rheumatologist visit was in 2008, and in 2013 my ANA was pretty high and I was diagnosed with Undifferentiated Connective Tissue Disease and Raynaud’s disease. I have had Hashimoto’s thyroid disease since 1990 (age 11). I have a partial IgA deficiency. My inflammatory markers were always low but MPV is now high. My arthritis is now considered moderate to severe. I have inflammatory gastritis and pernicious anemia. I DONT have psoriasis except on scalp and ears, and a small patch on foot.
it did at first, but then I developed an immune response to it and had massive flares with pleurisy etc. I switched to Enbrel and methotrexate. This worked great till I developed vestibular migraines. Now I’m on Taltz but it’s not as good as Enbrel.
Totally understand your frustration one min I can move good then bamm next it like a Mack truck just hit me I’m down breathing excerise has been my only relief most times I am not into allopathic medicine so try be careful
Can PSA cause foot drop, loss of knee jerk reflex, or damage to the axonal nerves ? I think I have PSA, yet army of doctors and specialists I have been seeing never considered it.
Im suffering this too. From sri lanka. Was on infliximab and stoped during covid. Now not on anything. Pain and stiffness are manageble . Nail changes++ and getting worse with a sip of alchohol 😢. Tendinitis and waight gain are the major concerns for me😢😢
Sorry to hear this - Are you able to move well? Like walking, stretching, maybe lifting weights? I think all of these things are really invaluable and will help with your main concerns.
I’m 50 diagnosed ten yrs ago, I’m starting on immunosuppressive drugs very soon, the pain is too bad now and my fatigue is extreme, I work full time and it’s getting harder and harder… thank you for your tips, really helpful.
Hey, thanks for your comment. Sorry to hear about the pain and fatigue - I think the fatigue part is really underestimated when talking about arthritis, it has such serious knock on effects. Hopefully you find some relief with the drugs and they allow you to really get on top of this!
Get your testosterone level checked I have the same condition. Once you get your testosterone levels to high normal it’ll take about a year but you will get better. I am 90% better because of testosterone I could barely walk a year ago. Of course I change my diet to.
I’m happy for you but since pain is so relative , I’m assuming you have this under control otherwise you would have taken full advantage of the new biologics specially Cosentex … my suffering had been so bad that I welcomed a biologic. I think the risks are far less than the risk of the disease as it progresses. I wish you all the luck.
I addressed this in a more recent video about why I don't take the biologics - and you are right, I have managed to get this relatively under control (with many years of effort). In that other video I mentioned that I would not hesitate to take the medication in the negative impact this is having on my life got more significant. Not on a moral crusade against biologics or anything. I think a lot of the worst pain I had was before I was diagnosed (/misdiagnosed) and I spent a lot of time trying to get it under control - so by the time I was diagnosed they were less needed. But if I had been diagnosed sooner I almost certainly would have taken them straight away.
After years of trying to figure out why I am hurting in many of my joints, I finally found a rheumatologist that seems to think its psoriatic arthritis. We are doing tests over the next few weeks. After watching your video, you really made an impact on me and I think there is hope now. Thank you for being so honest and thoughtful. I will now dig into your other videos :) *subscribed!
Thanks for sharing! I just got diagnosed last week and so I'm sorting through all the different things I might have to do so its very helpful to hear someone's perspective. I started walking regularly nearly a year ago before I even knew what was going on and it's really the best. I've had good luck with acupuncture recently, I'm a lot less stiff when I wake up these days.
@@walkwithkev mine too. It never made sense. I was training x6 per week (kickboxing and running). Then as u described it felt like something had wedged in my hip. I had that on and off for years then the rest of my body followed suit.
Sounds like we had a very similar journey - hope you're doing ok these days and able to stay on top of it! I'd really love to try kickboxing and BJJ, but my body is not up for it unfortunately
@@walkwithkev mine never got really bad until is was 43. I had lots of aches and pains but I always thought that it was the training and fights. Then over a 2 week spell I could barely move. Dmards and biologicals haven't agreed with me. Still trying to work it out in my head. I do the regular walking. It's hard with my youngest son as I can't run at all nowadays.
Sorry to hear that, I can't run either but used to really enjoy it. If the drugs aren't helping, have you looked much at diet? I think high fiber has been critical for me (plants, not bread/rice etc...). Fasting has also made a big difference.
After so many physios and tests yesterday a physio said I might have this psoriatic arthritis so he is asking my doc to refer me to refer me rumatoligist my back is in bits all the time I've osteoporosis osteoarthritis and scoliosis plus my left hand arm and shoulder my left foot and leg all swollen stiff and some pain. I have very little energy and my psoriasis flares up when stressed
Hey, so sorry to hear this - my psoriasis also flares up pretty badly when feeling stressed, which in turn makes me more stressed, which sucks. Are you able to walk or do any sort of exercises from your physio? And have you looked at diet yet? Hopefully the rheumatologist can help - but while you're waiting I think it's definitely worth looking at these things
What an amazing video! Thanks for putting this out into the world. I am curious as to whether you take any medications at all, or do you just stick to your six principles for management of your PsA?
Hey, you are more than welcome. I don't take any medications at all, apart from the odd anti-inflammatory. Though I want to be clear - I don't advocate for or against any specific medications, everyone's situation is different. I made the decision to try and manage this as best I can through lifestyle interventions. This does require a lot of time, knowledge and discipline - and I have the luxury of being able to spend time on it. I believe the most important things to look at are diet, sleep and movement, then strength training. They have definitely had the biggest impact on me personally. For me, eating processed/sugary foods and missing out on sleep is all but guaranteed to result in pain. I also believe that everyone with PsA should spend some time on this stuff, regardless of your medications, since medications can lose efficacy over time.
Hey - no problem. I'm not sure what you mean by practising nutrition, but I'm not a nutritionist or dietitian. I did get certified as a 'nutrition coach', but that's something a bit different - basically I've spent a lot of time reading up on nutrition and how to approach making sustainable dietary changes.
You are a unique and inspiring person. It's surprising to me how few subs this channel has because the message you are putting out is priceless. My best friend is currently dying after 20 years of severe PA and now cancer. She's been obese for decades and on the biologic treatments which to my view maybe kept it at bay a little, but caused early onset of dementia, or something like that. She has always been a sugar addict. Going so far as to sneak out and buy very large quantities of candy bars etc. This and zero attention to nutrition and healthy diet is what caused the obesity, and I believe the PA and fibromyalgia she was diagnosed with. It has been heartbreaking watching her destroy her body and health over such a long time. Encouragement by me to pay more attention to diet and healthy living always fell on deaf ears and provoked anger. Clearly she needed psychological help but would never consider it. I implore anyone living with PA to take what is said here very seriously as it really is the key to managing your condition and living well.
Hey, thanks for the comment and kind words. I'm really sorry to hear about your friend. We live in a really challenging time for a lot of people. Emotional and physical pain, coupled with a food industry that feeds us cheap ultra processed, addictive crap can so easily lead to downward spiral that is really hard to climb out of. It really can be overwhelming to push yourself out side of this system that is everywhere around us and make positive changes in your life.
I can relate to all of your observations. On the gut input/output. I noticed the same things (and benefits of fasting). I got checked for SIBO and worked out sulfites were the main irritant. This was really critical info to help remove some of the guess work on foods I can reintroduce after having a severely restricted diet like you mentioned. Mongrel disease. I have also found the weights and walking and sleep and stretching are key. But my ankle is knackered atm and so frustrating I can’t walk. And I hate swimming- but you’ve helped me to be enthusiastic about getting walking again for 2024. Thanks for the video
Very interesting thank you. Glad to see someone keeping PA at bay without long term meds. I had a big flare up in my knee taken down with steroids. Now just stiffness around shoulders, arms/hands and sometimes back of thighs. Fortunately quick diagnosis of PA in months not years. Rheumatologist wants to put me on a DMARD. I’m reluctant but concerned about joint damage. Ongoing symptoms not too bad at this stage so wondering if I can reverse with diet changes etc. Any idea at what pain/inflammation threshold joint damage kicks in?
Not a doctor, so won't comment too much on drugs - but DMARDs are the one I definitely heard the most negativity around in terms of side effects. Personally I'd probably go for a biologic if the day comes. I do know some people that took a biologic which reduced their symptoms enough for them to work really hard on diet, exercise, walking etc... and now they are down to one shot per month, and his doctor said he might be able to come off it (though this wasn't PsA, it was Ankylosing Spondilitis). In terms of joint damage, that's an interesting question that I've been trying to find an answer to. Technically, whenever there is an inflammatory response, the target of the inflammation suffers some collateral damage (this is true of infections, or a splinter or something like that). So the important part becomes 'how long does the inflammation last and is the body effectively able to clean up and repair afterwards'. There are some things that help with that clean up / repair process (like Omega-3s in your body) - this is an interesting read: www.nationalgeographic.co.uk/science-and-technology/2022/03/the-end-of-inflammation-new-approach-could-treat-dozens-of-diseases Overall my goal is to reduce/elimination chronic inflammation and try give my body what it needs to recover. If I'm stiff I move, I avoid heavy impact on the joints and work on joint mobility. This seems to help a lot.
@@walkwithkev Thank you for your detailed reply about your overall approach & the interesting link. That’s an important point about giving your body what it needs to repair. I’d say I have stiffness rather than pain currently - just my shoulders permanently feel like I overdid it in the gym yesterday. So yes, it feels like it’s in permanent ‘repair’ mode, which I suppose is what inflammation is. I’m still on low level Prednisolone winding down (5mg/day currently). Seems logical to keep any meds to the minimum and try to get off them asap (with diet changes etc). My Rheumatologist says I have to start on methotrexate & possibly another DMARD before I can try a Biologic. Currently experimenting with 3 days of fasting (to reduce belly :)) & wondering if fasting helps PsA at all. Other than that I’m looking into big dietary changes going forward. Thanks again
Happy to help! In general I think you need to think about diet/exercise etc... regardless of the drugs, because whatever medication you are on, they can fade in terms of efficacy over time. It will also help you better deal with some of the side effects, if they effect you. Slow and steady with positive changes I think is your best bet for long term success. For my shoulders there are three things that I've found hugely beneficial: 1. Hanging from a bar - however long you can comfortably do it 2. Shoulder dislocations - Search for a video on this, but basically you take a resistance band, or long stick, hold it with both your hands as wide as you need them, and bring it over your head from in front of you to behind you 3. Waiter walks - take a weight and hold it over head with one arm, then walk with it for a while. Repeat with the other arm. This is great for shoulder strength and stability The key with all of this stuff is doing it regularly and not to the point of exhaustion.
I'm sorry to hear that, that must be awful! Have you looked at swimming, or even just walking in a pool? It will talk the pressure of your joints but allow you to get that vital movement into your joints. There are also some seated exercises you can also try - like sitting at the edge of a couch and just straightening one leg at a time.
@@walkwithkev I pushed through it today & walked for 30 minutes. I was only diagnosed yesterday after 7 years with 'osteoarthritis'. I think swimming & Qigon are the way forward. I'm keeping a Psoriatic arthritis diary so I don't forget how I felt physically & mentally. So glad I came across your vids, they're really positive.
There's definitely a emotional element to this thing, in my experience, if I have a good cry I feel better after. Keep going people, don't get stuck in a victum mentality. Don't let it win!
I was diagnosed about ten years ago and it mosty affects my knees. I was treated with steroid injections for several years but when they became ineffective i was put on leflunomide and then methotrexate also. After a couple of years i was told by my consultant i had to stop my medication due to side affects. So 3 years ago i went vegan and no processed food and i have been significantly better than when on medication. I now eat fish but avoid all dairy which i believe causes my inflammation. I suggest anyone with this condition to experiment with diet. Hope this helps 😊 Charlie
Wow, thanks Charlie - that's amazing to hear. I also went vegetarian/vegan but found that adding in fish had a hugely positive impact for me.
For me I went whole foods vegetarian but my conditioned worsened so I added protein, went gluten free, then paleo keto & now carnivore/animal based and all inflammation went away. It was all a 3 year process. I started animal based back in January. Now more carnivore. Eat a lot of fatty rare meat & avoid all lean meat. I do eggs & lots of butter/ghee/tallow. From time to time I'll have a bit of fruit but no veggies. Look at Dr. Berry, Dr. Anthony Chaffee, Dr. Philip Ovadia, Dr. Kiltz
What type of fish? Any fish particular?
@@11111uewfh Definitely some sort of fatty fish (like salmon or tuna - lots of Omega 3 days), one or two times a week. I usually have salmon twice and white fish three times a week (hake, cod, haddock etc...)
So once you started eating those, you noticed a difference? And if you did, how long did it take for you to notice that difference? I'm really struggling with the joint pain in my feet from it. I'm also currently significantly overweight which I need to change with diet.
The biggest thing I find suffering with PsA is the fatigue…it’s not feeling tired, it’s something off the chart tired! PsA ruined my music career, and I’ve tired every single biologic known to man, only one worked and it was incredible, but it stopped working after a year, ever since then I’ve had reactions to them, breathing issues and itching.
I have an appt with the rheumatologist tomorrow morning, as I’ve been on low does steroids for nearly 3 years and now they’re causing pre osteoporosis. If I wasn’t on them I would t be able to use my hands as I’m a bicycle mechanic. Work have been very good to me. I’m a keen musician (like I said) and cyclist and I go to the gym 3 times per week, I know what you mean about lifting it helps so much. I’m currently trying no gluten and I’m on day 7 and I think it’s just a coincidence that my joints have been a bit better, I’m not very hopeful these days with it and I get what you mean when you say you don’t want to die, just not too hopeful about living. Thanks for the video man, and I hope you’re ok and keep your symptoms controlled. I think my family have had enough of me talking about it so I don’t anymore. It’s my problem I guess. All the best mate.
Hey Peter - sorry to hear about everything you've been through. It can definitely be very isolating, it's not really possible for other to understand what you're going through.
I think I've got my symptoms pretty well controlled now, but it takes a lot of work - it's a full time job. Focusing on diet, walking & working out and extreme consistency. I've found lately that red light seems to help me a lot - that's something you could try if you have the means.
@peterwalsh5068 have you discussed JAK inhibitors (small molecules drug) with your rheumatologist since the biologics don't work anymore? There are also new biologics being approved over time. All the best in managing your condition. I'm a PsA patient too currently on biologics. The fatigue is still a symptom that is challenging for me (even on biologics) but it is much better managed with biologics
@@DominicWong I’ve tried them all, like I said. As far as I’m concerned they’re a load of shit. If this illness doesn’t kill you, then those drugs will.
Hi, I use the lego block analogy too, in my ankle. I have been on Biologics, Tremfya, for last 12 yrs, brilliant! Prior, i had to ‘prove’ methotrexate and 2 others were not tolerable. I developed psoriasis at 15, with “growing pains”. at 40 nearly needed cling wrap my skin to wear clothes. At 53, crumbling ankles and tendonitis are pulling me up, as are wrists, so no more cartwheels. Bone now has “moth blown effect” ready to crumble more. Exercise has been key to keep muscle tone. Good luck to all, stay strong, reach out to others. Travel while you can, Dance whenever possible.
Thanks for your honesty and straightforward explanation of PsA. I agree with a lot of what you said, sometimes it seems like looking after one's self with this disease is a full time job. I've been a fitness instructor and enthusiast for over 25 years and movement certainly helps us - don't use it, you lose it (function). There is lots of information these days out there on functional fitness over the "no pain, no gain" approach and I've altered both my mindset and what I teach to keep moving....boy do I miss running though. I do, however, take a biologic as I fear for the future, as far as mobility goes. I wish I could say I was without pain but I just manage it.
Hey, thanks for your comment. Yeah same here, I was really just getting into running it when my symptoms were getting bad. Mobility is definitely a concern - and it really is a full time job. I try to be really in tune with it, so that as soon as it slips I can look at treatment. Thankfully I can work remotely, which really helps me stay on top of my disease mgmt schedule!
Thank you for sharing this. Regarding not taking meds, I recommend keeping an eye on it, regular joint images. If you're in pain, joint damage is happening it's just a question to what degree. This disease only gets worse, people mention cancer risks for the meds but they don't mention that without meds, this disease gives us an even higher risk of cancer. Active inflammation. If someone had diabetes we would not hesitate to "depend on a med company" for it. Especially I see you play guitar. That's what's most important to me. Feeling pain in my hands, that's really scary to have a passion taken away like that. For me, sugar has been the big instigator but no other big factors I've found yet. Cut it out entirely because of how painful it makes me. They haven't been able to find a medication that works yet for me, we'll see... I've read a lot of stories and don't want to be another person who says "I wish I would've not been stubborn and taken meds 10 years ago before it was too late, now I can't move my back". I don't mean to push my agenda on you, that's an individual choice. But I would keep a very close eye on it, and be open to it. Your spine swelling... That can be quite an issue really quickly esp long term, and might be remediated if you went on a drug
Hey, thanks for the comment - really appreciate this feedback. I do bloods regularly to watch CRP, and will be following up with scans. I also do drills every day to make sure my mobility is still where it needs to be, as soon as that starts to drift and I can no longer lift properly I'll be reconsidering my approach.
Cosentyx and a diet low in carbs has been a life saver for me. There is a huge difference in my quality of life.
I’ve been seeing a rheumatologist for 4 years now due to psoriatic arthritis. Thank you for sharing your symptoms and how you cope on a daily basis. I also don’t want to rely on medication as the side effects are scary, so I thought I would try intermittent fasting with a nutritional keto diet removing sugar and a lot of carbs from my diet and I notice if I slip up that I get really sick and stiff and the pain increases dramatically. So I totally agree that these foods have a negative impact on psoriatic arthritis. I also move daily according to how I am each morning and it does improve movement and pain… I have an elliptical strider that has been my biggest helper plus other forms of movement.
I have had pain in my left knee since I was 12 and was always told it’s growing pains. I’m 54 now and I can look back over those 42 years and see all the flair ups I experienced… it’s a day to day process like all auto immune disorders but knowing your body and what it responds to and it’s limits is priceless 😊
Hey, thanks for commenting - glad you've found a way to control this. I actually want to do a video on that topic of 'slipping up' - it's such a cruel thing, where we don't get the option of a 'cheat day', slipping up can hit so hard. And 10)% agree that knowing your body is the real important bit!
It's hard to be sure but I think removing dairy from my diet is the reason I have been able to come off medication.
I've had PA for over 30 years. About 10 years ago I was able to put it completely into remission using a restricted diet and vitamin D therapy, no meds. I have some permanent skeletal damage from it, but I'm still in remission and excellent health today.
That's really amazing to hear, thanks for sharing! Was your vitamin D therapy just supplementation or something more specific? Would love to hear a bit more about that and your diet. I've been doing really well thanks to diet and pretty strict lifestyle interventions. I still have limitations, but I can move well and train and pain levels are the lowest they've been in years. A doctor recently said to me 'whatever you're doing so working, so keep doing it' - which was great to hear.
@@walkwithkev I strongly recommend getting a comprehensive food allergy test, and eliminate all food allergies and sensitivities. I also recommend eliminating "vegetable" oils, fast food, and processed foods. I eat a moderately low-carb natural food diet. I did vitamin D therapy through sensible sun exposure and supplementation. I weaned myself off of all meds within 6 weeks of starting this. Took a couple years to get completely into remission. My vit D levels are a bit high now, so I just do sun in the summer (it's sunny where I live), and moderate supplementation in the winter. I wrote a paper about my experience and protocol, if you'd like to read it. It's free. I'm not selling anything. The paper has a lot of recommended helpful books, too.
Vegetable oils, fast food and processed food are long gone for me thankfully, and I'm whole food only - and this definitely makes a huge difference. I will definitely look into an actual food allergy test though. And will get some more vitamin D.
I would definitely be interested in reading your paper if you're happy to share it!
I suffer from PA and I would love to read that paper you wrote. I am willing to try anything.@@paulclaerhout6997
Paulclaerhout6997 - I'd be interested in checking out your paper too! Vitamin D therapy, whatever the form, sounds intriguing as it coincides with my own findings: namely, that "phototherapy" was extremely helpful to my psoriasis.
Very helpful to hear your experiences. I am going through recent diagnosis with both skin and arthritis starting within a few months of each other. Overwhelming transition of decisions and difficulties of going through medical world. Thanks for your information.
You are more than welcome - this will be a lot to deal with, mentally and physically, but you can do it. Feel free to reach out any time.
It was twenty years before I was diagnosed with psoriatic arthritis and ankylosing spondylitis. The diseases have progressed to the point where I'm now in a motorized wheelchair. I can walk a very short distance with use of canes, or walker, but the worst of it is the chronic pain and weakness. I'm on a biologic which has helped immensely, my entire body no longer aches. No, it doesn't eliminate all the pain nor the progressive joint damage. Everything I handled I end up, dropping it on the floor now. The cost of the biologic is insane if you are not on an assistance program or have insurance to pay for them you are screwed. I don't like biologics due to the cost and potential side effects. I know I'm rambling. It's a horrible disease. It's terribly misunderstood, especially within the medical field. I try not to eat processed foods and drink a lot of water. Sugar is poison. I wouldn't wish these diseases on anyone. Advice, travel while you still can see the world.
This is the best informational video on Psoriatic Arithritis I’ve ever seen. 😢 I am 63 year old woman and took about 20 years to get my diagnoses. The doctors kept treating my nails for fungal infection. Very sore.
Damnnnn .. your doctor wasnt good … my doctor immediately after seeing my nails was able to diagnose iy was arthritis and not just fungal infection😮
@@simran550hi simran I have a question
@@saikrishnareddyPabbathi yes
@@simran550 I have a scalp psoriosis and I think I will get pca soo I want to start a diet can u give any suggestions in insta I have a page 😕
@@simran550 I want to remove my stress and depression from this condition🥺
Thank god i found this....i'm not alone.
You are definitely not alone - and there is a lot you can do, and a lot of support out there
I've had psoriatic arthritis for 3 years. Crippled me. Been on Amgevita for 4 weeks now and it's already making a massive difference. I lived on Prednisolone before that to make work and live some kind of life. If you have mild PA fair enough, walk and diet etc is good and highly recommend, but if your symptoms are bad, don't mess about, get on the biologics. The only side effects I get is fatigue for a few days after injection. Life changing.
I love when you say " I cannot live without thinking" . That's it. I totally get that. I have to think out my whole day on a micro level. I have to figure out how many hours of activity I can get away with before I run out of steam. I have to figure out what my movements will be. High curbs on streets are a problem for me. I know how that sounds but it is true. Sugar is a SUPER DEMON for me. No doubt. I have done a test on this and it was so obvious. Terrible. Also, fasting is a gem for me to..........I loved this video and I gleaned so much good advice from it. Thank you very much! God bless you and I wish you the most productive life you can possibly have. Lots of love from Texas!❤
I have be diagnosed with PsA runs in family but I have been in pain for more 25 years. I got guttate psoriasis after the COVID vaccine. Which was my trigger as it runs in my family. I daughter now has back back pain. I she doesn't follow my footsteps.
Awesome video. Been living with psoriasis for last 20 years and for the first time ever I think it’s evolved into psoriatic arthritis. Trying to learn as much as I can. Thank you so much for being honest and transparent and taking to the time to make a super informative video. It’s cathartic to hear other people’s stories of living with this disease.
You're more than welcome, happy to be able to help.
Thank you so much for sharing this, I am much older , I have had joint pain since I was in my twenties, same things you described. I developed psoriasis later on in my life. I have taken many medications, they helped for a while , but then quit working. Listening to you made me realize that I have psoriatic arthritis. One thing I always did was exercise and made sure I did not gain weight. So thanks again now after all these years I know what my problem is.
@@tinaledonne4702 You're welcome, really glad I could help in some small way.
Thank you so much i really appreciate your vlog.
I have psoriatic arthritis. It hurts me all day everyday whatever I'm doing. I inject biologicals so without them I would probably be in a far worse state.
Recently I decided to change my diet and my psoriasis is so much better! My exposed arms are no longer an embarrassment. All I have eaten for almost 3 months is chicken, fish, eggs, nuts, cheese, olive oil, grass fed cows butter and mostly organic vegetables like kale broccoli and cauliflower. I have blueberries and strawberries for dessert. Honestly it's been amazing! My scalp is clear which was dreadful. The only thing is that the chronic aching hasnt improved as yet.
I dont know anyone else with this disease and I couldn't find any face to face groups so as to meet others and chat and get to see what people do to cope with getting out of bed in the morning etc so thank you. I have just subscribed 😊
You are more than welcome, and thanks for watching/subscribing!
I'm really glad to hear you've seen improvements to your psoriasis! In terms of the chronic aching, I think it's important to move as much as you can. What you can do will be different for everyone, but if you can manage a couple of 10 minute walks each day, that would be great. Some very gentle yoga would be great too. Resistance bands are also a great option for working on strength and mobility. It's important to start to understand your body and what sort of stiffness you can safely move through vs. when you need to take it easy.
Also, if you're not already, it's probably a good idea to find a good fish oil supplement and start taking that. There are other supplements we could talk about too, but I think fish oil is the most important one.
@@walkwithkevAlso zinc (vitA, D3 from liver oil indeed) but also C and K2
I have not been formally diagnosed. But I can relate with your story so much.
I have had psoriasis since I was five years old. I have had plaque psoriasis on my scalp, forehead, ears, eyebrows, belly button and now on my elbows and knees, Doctors call my psoriasis mild. I have had the eye inflammation 3 times and my nails have been affected for years and my back since my 20's. For the last 2 years my feet are in agony standing, walking are difficult and I cannot even tie a shoe over my right foot due to the pain. Apparently Australian doctors cannot make the connection to PA and I have had to ask directly for a referral to a Rheumatologist as I know this is what Iam suffering from.
Thanks for sharing your story.It's such an honest and emotional testimony.Only those who live with a chronic degenerative autoimmune disease which is so painful,invalidating and exhausting understand how cruel these heartless diseases are.Nobody understands us since they are invisible diseases to the rest.I suffer from AS which shares a lot of symptoms with your disease and I'm still fighting to Accept my reality.it has stolen my whole Life: social life, family life, sport life,sexual life,sentimental life,....everything. Keep Up your strength and keep up surviving!!
Hey, thanks for commenting, and so sorry to hear about your struggles. I know a couple of people with AS, and it is really awful. I think acceptance is a really important part of the fight - keep your head up and keep going. Get to really know your body, and I'm sure you'll find something that will help you, probably not a cure - something something that helps you feel better. Feel free to reach out if you ever need support, or just someone to talk to.
Just shows how life quality can be improved with the lifestyle choices you use.👍 I've always had chronic back pain and scalp psoriasis, some joint pain. Bloods ok, though have ms. No joint swelling though so not sure if I have it. Is joint swelling a main feature for you? I think you say in the video you did have this. I think in AS which often affects the back it might be seen on a scan/xray.
I’ve been dealing with symptoms, to differing degrees, since high school. I’m now 41 and I just felt relief finally knowing what’s really wrong with me.
Hi Kev, I'm just realizing that I may have this. Thank you for your thoughts. I've been suffering from various symptoms for years. The doctor says to me you have a bad back, go to the physio and nearly die with the pain. Years and years of cortisone injections into my joints, elbows heels, and spine. Works for a while but then back to square one. All what you describe I feel. The worst is getting out of a chair or car. Walking is a nightmare. I'm definitely going to the doctor and getting tested. Family history of arthritis in various forms. It's going to be a game-changer for me. Thank you so much.
Hi Olive - you are more than welcome, and I'm so sorry to hear about your suffering! But understanding more about what is going on is definitely a silver lining and will really help you in your battle against it. Best of luck, there is a lot you can do to fight this and live an active fulfilled life!
Thank you! I’m in the metal state of serious skin condition with hair loss as well, the joint pain is unreal in my hands especially in the morning. Everything you spoke was so genuine and I’m going through the motions it’s something very new. I’ve been diagnosed at 65 and I’m very young at heart with a healthy body that is in a lot of pain lately scary thank you for your honesty input.
Hey, sorry to hear that - but glad to hear you're feeling young at heart and healthy, that definitely helps a lot! Chronic pain really does mess with your mind, so mindset is an important thing to think about. I mentioned on another video that I find the morning pain is lessened a little bit if I try to avoid eating in the 2-3 hours before bed.
I was just recently diagnosed with psoriatic arthritis but do not have psoriasis.
Hai bro i have this problem, i diagnosed 4 months ago. I continued medication but my joint pain is still on me, thanks your valuable suggestions 🙏🏻
Another big clue for whether you have psoriatic or rheumatoid arthritis is symmetry.
Rheumatoid Arthritis tends to present symmetrically along the axis of the body - both hands, both knees, etc.
Psoriatic Arthritis tends to present asymmetrically - for example: left hand, left elbow, left ankle...but not on the right side.
Sounds like another name lumping symptoms of Mast Cell Activation of connective tissue disease such as Hyper-mobile Ehlers Danlos Syndrome. Flexible due to the degranulation of the tissues, vessels, tendons from a mast cell flare gone rogue into autoimmune.
This degranulation of the mast cells permeates the tissues through all the system..: systemic response. This causes permeability issues between the blood brain gut organ vessel tendon barrier walls of protection.
This leads to the things that enter our body dynamic through skin, ingestion, breathing, virals, bacterial, a stress inflammation response to due to trauma or injury or surgery or long term stress will all activate the mast cells into a flare.
The mast cells remember what causes or what is within during a flare and codes it for future flare response to um… save the host? And pushes symptoms of pain and inflammation to ward off the threat of um… chocolate or any histidine producing agent or whatever protein it has identified as a threat and looks for like being ingested or applied or breathed in and goes like a gangsta to attack.
Inflammation. Yet due to permeability issues due to degranulation these are now transferring from the blood and gut and kidney and bladder tissues into the bones, tendons, tissues through the body and brain. And it sends inflammation cytokine storms into these areas to kill off ehe invader that is just a chocolate Easter bunny.
Not fun or funny.
Just my opinion take.
Just another name for the same game of Mast Cell Activation… where the idiom “on steroids” is actually what is necessary to mediate yet not a good long term solution.
Yes…. Your six area protocol can be instrumental to management. Yet isn’t a cure.
Avoidance and fasting and very conscientious supported micro management exercise every day all day is exhausting vs just living without undue cumbrance and soldier level discipline which reminds the brain and body it must be kn hyper alert ever ready for threat and attack. Never rest soldier. Train, don’t indulge, don’t let down the guard at the gate least we die.
Maybe try some mast cell stabilizers and pray there is not a negative mast cell response to them and see what happens.
Good luck and thank you. I walk least I can’t move ever again. It consumes my life. I eat almost nothing because of flares and lace and brace and move and breath with continuous thought and well… it’s an exhausting unpaid full time job.
“But you look healthy”
No. Healthy to me today looks like fat and happy and pain free sitting in a sofa eating whatever comes my way watching old reruns and still feeling good enough to get up and waltz through Walmart on the way to Disney like so many do and don’t feel pain. Real.
I would prefer to be fit and healthy and pain free and eat a healthy diet with all the healthy organic plant based foods and do any old fad of diet and exercise Pilate queen jazzercise granny out there… but no… that all leads to pain not gain.
So I walk and fast and avoid and try try try to be accepting and thankful for what I can do vs what I can’t. But that takes a whole lot of constant conscious effort and thought and it’s exhausting.
Keep on walking
Keep on smiling
😊
How are you doing nowadays? Thank you for sharing your experience with this awful illness, ive had it around 20 years (since my mid 20s) and live in Scotland, so not too far from you. It started in my sacrum, now my entire body is screwed as i refused DMARDS and biologics out of fear. Ive had to give in in the past couple of years and run the gamit of meds so now starting methotrexate injections today, and if they dont work its on to biologics. Already trued the tabs ehich made me ill and sulphasalazine with turns out im allergic to lol. I had nail pitting and psoriasis as a teen, and always sore legs. Had to chick work aged thirty when i was diagnosed as it was a very active job. Ive had to use a walking stick for ten years, i get funny looks as im a bit "emo", still look relativley young, but cant walk very well. Its hereditary in my family unfortunately, my teenage daughter has psoriasis so im fearing for her. I have screwed up discs too. Great fun. Have you done any more recent videos on how you are now? Hope things are ok, sending healing vibes 😊
Im waiting for my first rheumatologist appointment. Hip pain has brought me into the doctors office over and over for years. I thought i just had tight IT bands from running. The pain and stiffness is worse in the morning and better with movement. I have also started to have other symptoms such as dry eye, jaw pain, finger joint swelling, low grade fever, feeling like i have the flu, fatigue, etc. My doctor repeated the tests for RA she did years ago and this time around it was positive for R factor. It's my understanding that PsA doesn't usually test positive for R factor, but RA does. However, I think my symptoms are closer to PsA than RA. I also have scalp psoriasis. I have been trying to research othe people's experiences with pain, symptoms, onset etc and compare them to mine before my appointment so I know what symptoms i have that are relevant to help me get an accurate diagnosis.Thank you for making this video, it really helped.
Hey, thanks for commenting - and sorry to hear about your struggles with pain and getting a diagnosis. This is a prime example of why people struggle so much with diagnosis, the symptoms can be really inconsistent. Either way I think the self management techniques I talk about on the channel will help as you navigate your way through this.
I wish you all the best in your journey.
One thing you did not touch on is that PHriatic arthritis is not curable I went from one drug to another drug on and on Eventually I quit I'm 76 years old and I'll do the best I can with God's help thank you for sharing
Hi, thanks for commenting - yeah that's a good point, and something that is important to remember. If you are self managing a condition like this it's easy to start blaming yourself for your flare ups, which is not healthy. It's also easy to slip up in your routines because you're feeling good (I talked about this in my video about discipline). Important to remember that it will always be there.
Hiya Kev. What a great video for those who may be questioning pain they are feeling. 18 mths of hellish pain after giving birth (got septic blood infection in hospital, icu for 4 days, hospital for 1 month, wheelchair for 11 mths had to learn how to walk) and many tests showing nothing wrong yet feeling extreme pain in SI joints, finally a Rheumatologist found my SI joints were a mess and diagnosed me with Psoriatic Spondylosis Arthritis. Today, 21 yrs later, my back, knees, eyes are also being attacked. There are no longer days of no pain, it's constant and draining. Tomorrow I'm off to see an Exercise Physiologist to see if they can help as it's truly becoming so unbearable. It's hard finding ppl who understand this awful disease, especially ppl who understand chronic pain, extreme fatigue and utter frustration. Anyway, enough of my rambling. Thank you for bringing more awareness and encouraging ppl to never give up when seeking the truth. My body is now a mess due to ppl not listening back then as PsA was quite uncommon and can take a few years of pain and suffering before it shows up on imaging (some Drs even thinking you're a hypochondriac as imaging was ok). They tried every type of medicine to slow it down but unfortunately, this is impossible for Psoriatic Spondylosis Arthritis.
It was very hard trying to raise my daughter while going through this, but I did. She's now 21 and I'm hoping to get help from this Exercise Physiologist tomorrow. I'm needing an Mri of my upper spine now as pain is extreme near T9-12 but it has to wait as they are $400. Our health system makes it hard for so many to get answers. Anyway, thank you again. For those suffering, stay strong and I'm sending you all a hug.... just incase you needed one.
Hey, thanks for your comment and I'm sorry to hear about all you've been through. Hopefully you can find a program that works for you to find some relief! It really is so difficult to communicate pain and impact of chronic pain.
@walkwithkev so true Kev. I just remember that there are others out there far worse off, at least I can still walk, for now. I hope that you are doing ok. Sending hugs
Sending you a hug ...I needed one very bad today
@patriciamangan3595 sending you another hug Patricia, just incase you needed one ❤
Thanks so much for this video testimony. Wow...your PsA journey sounds so much like mine. I started to post a longer response but didn't want to wear you out. It is such a blessing knowing we are not alone in this journey!
Hey, you're welcome - and you're definitely not alone with this!
Mine began with an event that caused me to have a PTSD for three months then the itchy back of head arose. It’s all progressed from there to lower back, shoulder, both thumbs and top of foot on left then right big toe!!! It’s been diagnosed as Osteoarthritis.
I think I need to see a a Specialist.
Hey - sorry to hear that. It's interesting, my psoriasis started to really come through around the period I started a more stressful job (I was putting in a lot of hours), and pain became more consistent. I've definitely noticed that stress contributes to flare ups in both skin and joints.
I think you should definitely see a specialist.
I am going through it all right now. The pointlessness feeling phase, the realization that i'm gonna live with this forever, the struggle to quit smoking, the craving for chocolate. Thank you for this.
Giving up smoking is really tough - but you can definitely do it and you will be so glad you did! Best of luck in your journey, you can definitely find some meaning out there - but it's going to take a bit of searching.
I also suffer from Psoriatic arthritis but for me its mostly in my knees, elbows, and fingers. I too decided against biologics. Recently I've had so many people trying to push me into taking the biologics. It's very frustrating because I genuinely have a horrible feeling about the medications and its a constant nagging to take them everytime these people aee my skin. Thank you for the video, I can totally relate to your story. Much love 🙏
Hey - happy to be able to help, and I hope you are doing ok, managing this disease can be tough. I did another video recently about why I don't take the medication you might find interesting - just want to be clear that I think in some cases the biologics are needed and life changing, I'd hate to see someone do real damage to themselves by not taking them.
I feel the same way about the meds too especially the immunosuppressive ones, and I totally understand. It's scary, and when I'm on the meds I feel alot worse
This video is very helpful. I’m terms of diet, how do you think about added sugars? You mentioned the Easter chocolate caused an issue, but do you generally avoid altogether or how you found a level of moderation that works for you?
Hey, thanks for commenting. Lately I've tried to avoid sugar entirely - but I've found that small amounts are ok. For example, a couple of squares of dark chocolate after dinner will be fine. I actually suspect that blood sugar spikes are where the serious problems are - and plan on getting a blood glucose monitor to test this out.
The Easter chocolate binge I mentioned was probably around 50g of sugar in one sitting, so I'd almost expect that to cause problems for anyone! That is to be avoided at all costs. But 5g a couple of times a day, especially with fibre/protein to avoid the blood sugar spike is where I'm leaning these days.
@@walkwithkev The blood glucose monitor is an excellent idea. I used one to reverse my type 2 diabetes 3 years ago. By restricting carbohydrates, my symptoms went away without using insulin or other medication. One benefit of restricting carbohydrates is that it eliminated the inflamation in my joints. Years ago I had to quit playing tennis because my shoulders hurt every time I swung the racket. I gave up exercise of any type because of the pain. But the pain disappeared after 3 or 4 months of restricting carbohydrates. Since then I have seen hundreds of other diabetics who had various types of arthritis comment that their arthritis symptoms disappeared after getting rid of the sugar in their diet.
ua-cam.com/video/nj52yEUaFfA/v-deo.html
Thanks for sharing - it's amazing to see the transformations people seen as a result of dietary interventions!
The trouble with PsA is that it oftrn doesn't show up on tests............If treated early you can avoid damage and pain.................but doctors just do nothing until you present with really bad joint damage
Agreed - I'm not going to be negative towards doctors, but I think it highlights the importance of being an active manager of your own health learning more about your own body.
Thanks for such a descriptive journey. I was diagnosed at 32 (3months ago) very quickly since my psa is severe and signs were obvious. Had to start mtx high doses because there wasn’t time for experimenting with diet and exercises but I fully support this kind of lifestyle changes if symptoms are mild and the one can go without meds.
Acceptance is something that i still deal with it. You’ve mentioned it. It is like it is, this is reality, these are your given cards and we have to move forward. Btw i am also sw eng as you. Cheers
Hey - thanks for the comment. I think when it comes to diet and exercise, I always say that it's important to do anyway. Take the medication as needed - but it's probably not a good idea to rely on just the medication. The meds will be more effective when combined with the lifestyle changes, and the lifestyle changes will be there if the meds start to fade for whatever reason. Stay strong (and keep coding :) )!
Hi Kev. You are perfectly describing how I feel. It's in my hip, too, and my right toes. I ride horses at a very competitive level, but this won't last, I think.😢 I will follow you. Greetings from Mexico City and thank you so much for your channel.
You are very welcome, and sorry to hear that, but stay strong - do what you can and try not to worry too much about what you can't.
My journey is taking a very long road.
After 15 years I saw a newly qualified Rheumatologist of whom spent 3 hours going through all my notes. She was 99% sure it was Psoriatic Arthritis.
I was then referred to the head Rheumatologist who as soon as I went in said she hadn't had time to look at my notes (15 years of them) and handed me some leaflets on Fibromyalgia and told me to go and get better. I was so gobsmacked I couldn't get any words out. I had already had Fybro ruled out 5 years previous (In my notes). This was the tail end of 2019. 2020 arrived with Covid and I have not managed to have been referred since. There was a gentleman doing some training who sat in and he looked as shocked as I was.
I did manage to get the Fybro diagnosis removed when I got a follow up call about 6 months later and the specialist was also shocked with the total lack of care and misdiagnosis. Slowly getting worse and mobility poor along with the knock-out fatigue.
Sending hugs!
It's crazy how often I hear this from other people, it can take so long, with so much pain along the way, to find answers. It's such a shame that there is a large element of luck within the medical system. It might takes years before you find yourself in front of someone that can help. I really hope you can find some relief - the feeling of getting progressively worse is awful.
thanks for the video I've had problem with my feet for over three years it's difficult but we keep going
Hi, subbed, great to find a video from a guy living it, as opposed to an MD treating it or a Pharma selling a drug. PLEASE mic up! Your audio is all over, :). I was told I had osteoarthritis 15 years ago, gout, sciatica, 3 stage 4 degenerative discs. So a bunch. I recently 1/2024 saw my derm & think I have nail psoriasis, so backwards, whatever. So now, back to my rheumatologist (who IMO, was supposed to be the one telling ME, to tell HER to test & treat me for PSA. I am doing ALL/ALL the other stuff especially the gym (every friggin day) so I am doing my part. I am not at all hesitant to try any drugs that'll slow/stop it while I am still mobile. Will binge on your other videos & look forward to more. I am 76 so the chit came later for me but still not fun. Froggy.
Hey Froggy - thanks for your comments. Hopefully the newer videos sound better - I had a bunch of issues recording this one and the mic I was meant to be recording on actually failed but I didn't realise, so had to fall back to camera mic, which sucks, but didn't want to re-record because most of it was off the cuff. Glad to hear you're attacking the condition - hopefully you can get a handle on it!
Looking fwd to more vids. Exercise? :)@@walkwithkev
Thank you for posting this video. I was diagnosed with psoriasis a couple years ago after a few years of doctors saying I had seborrheic dermatitis. Now that I’ve looked into psoriasis I believe I have psoriatic arthritis. I’ve had that moving Lego feeling in my knees for 10 years but I thought it was just because I played every sport imaginable from age 5 through my 20s and might have torn something but didn’t notice. I believed skateboarding & football to be the main reason for my knee issues. But now I have issues with my lower back, shoulders, elbow joints, knees, toes, nail beds. And I’ve never injured any of these areas playing any sports. I’m 30 now and my body, mainly my joints, have aged worse than my fathers
Hey, thanks for your comment - sounds like it's definitely worth getting some bloods done. Skating and football will cause wear and tear, but not that much, especially if not doing it at an elite level. Figuring this out is half the battle, once you've done that you can really tackle it.
how are u now
Can if also cause Crohn's disease , only because i am taking Ustekinumab biologic,P2Y enzyme , Acetylcholine , Sugar insulin resistance, Solanaceae plants Nightshade plants bad .NAFLD as well, this just my limited knowledge but it seems , Sugar and carbs, plus the Nightshade plants , blocks Acetylcholine at the synapse messenger causing inflammation
I'm not really qualified to speak on this - I believe Crohns is also an inflammatory condition, so it wouldn't surprise me if it had some common factors. Personally I haven't found nightshades to be a problem, but everyone is so different - which is why I advocate more for setting a solid base (real food & exercise) and adjust as needed for yourself.
Regarding walking... to reduce pain do not heal- toe... bend knees slightly to lower center of gravity and walk like a child on the area below your toes and do not pound heels. Heels can lightly touch but no pressure. This way of walking ( Chi Walking) will be less painful.
Barefoot walking (weight forward /no heel strike). as much as possible helps too.
This is good advice, and exactly why I wear barefoot shoes - thanks!
Thanks ..I just learned I have that . Sausage toe my doctor called it ..Never heard that term before
But I'm not alone, it is nice to know .. I'm not crazy
Well, it is what it is
Got to learn the best way to live a good life as possible
Best of luck - and you are definitely not alone! Lots of great online resources. Also - I'm a certified 'Self management' course leader (from the Self Management Resource Centre). It's worth searching for them and seeing if there are any courses being run in your area, it could be of great help to you. Other than that - I hope some of my videos can help.
I have done a few elimination diets and carnivore definitely works best for me. I can be comfortable enough with a limited elimination-type diet but carnivore brings me such a wide range of mobility that is worth it. It is super restrictive but in time, I feel I get more and more used to it. I went twenty years in discomfort, three on meds, and now 11 years medication free with occasional flares if I stray from my diet. I was also that person who reacted to the covid vaccine so it came on strong two years ago, with one shot, and I am finally feeling better. I think this is due to carnivore as it is pretty new to me.
I'm glad you've found something that works for you! I've heard a lot of similar reports from the carnivore diet - sounds like there's definitely something to it, interested to see how it works out long term. One thing is definitely clear - diet has a huge impact! What that diet looks like will probably vary from person to person, which is why it's so important to figure out what works for you
@@walkwithkev I agree. I just wish a more extensive diet worked for me :(.
Yeah, it's unfortunate - especially given the cost of such diets and state of the current food environment.
Hi Janet, carnivore seems to be working best for me as well. The stricter I am with it the less inflammation and pain, I’ve gotten to zero pain… I find that adding garlic and leeks and some healthy greens like steamed kale and raw arugula, etc. don’t bother me. Which is great I like to keep my market biome Microbiome as healthy as possible, of course.
My challenges were deleting cream in my coffee, and I should delete coffee. Also getting rid of all the wonderful carbs. I am very thin so I could really do some dairy and carbs and terms of poundage. But in terms of inflammation, nope, not in the books. Thank you for your comment.
Physical exercise type depends greatly on other diagnoses ie osteoporosis, where excessive weight lifting can be disastrous, age, (I am 81, and live alone), dx. of colitis (IBD), not allowing tolerance of most green vegetables and fruits with roughage, spinal involvement not permitting movement tolerance to more than 10 minutes duration. I really appreciate this video, though, and really try to work around all my limitations, and agree on avoiding foods causing worsening of inflammation. I have eliminated gluten and nightshades recently and find that helpful. Thank you. I hope to view more of your material.
I've done another video specifically around exercises and Arthritis (and will do another one soon). Whenever I talk about movement and exercise it's all relative. What's important is to do what *you* can. Move as much as *you* can. The movement you are doing matters less than the fact that you are moving. If that is ten 1 minute walks - then that's great, do that. If it's sitting in a chair just moving limbs, that's great too - there is a lot you can do from a chair. Best of luck - and glad you hear you are tackling this head on!
Thankyou. I am going through first rheumatology blood screen. He said to look up Psoriatic Enthesitis and synovitis too. Heel pain so painful for 8months had cortisone which made it worse. Elbow surgery...didn't really help, both knees, hips. Can't go to the gym because of the heel. Even walking for a while increases pain. Ice ice ice.Back pain.....2 crushed vertebrae. Used to love lifting weights but the joints always so much more painful. Hope to get some answers soon. Over stretching. Was very flexible once upon a time 😢 Thanks for your inspiring story.❤
Hey, thanks for your comment. Sorry to hear about your struggles - hopefully you have some answers soon! I know you'll be able to get control of this, but there will probably be a bunch of pain and learning first.
Thank you for that informative video..I didn’t think that i could watch a 40 mins video till the end until i watched your video 😅😂
You gave me hope about dealing with psoriasis arthritis..i was diagnosed with psoriasis (scalp psoriasis ) about 10 years ago ..
psoriasis arthritis symptoms started about 3 years ago after i had corona virus .. docotors couldn’t diagnose the disease and gave me a long course of anti inflammatory drugs as ibuprofen but seems like nothing was working.. the major pain is in my upper back and neck (very stiff) the pain is worse when i wake up as you described..now i started to feel pain in my left knee and right elbow
So, as a pharmacist i’m sure now that it is psoriasis arthritis ..I’m thinking the same about having biologics as humira because of the serious side effects
Now i’m trying an elimination diet (as i felt better while being on it before)
And i’m going to follow your advice about walking and lifting ..hope it helps
I’m studying nutrition diploma this year so i think we would have things in common 😅
Thank you again for your informative video ❤ i have just subscribed your channel
Greetings from Egypt 🥰🥰
Hey, thanks for commenting - I've always wanted to go to Egypt!
Sorry to hear about your pain and troubles. Neck pain is awful, it can really cause severe limitations in your life. I hope you find some relief in lifestyle interventions! Diet and movement have been so huge for me, I really hope it's the same for you. Feel free to reach out any time.
PSA Enthesitis is absolutely a monster
Very interesting. Thank you for sharing. I've tried all the dmards and 2 biologicsls. Unfortunately all had horrendous side effects with no remission of symptoms. I too have back (sacroiliac joint) damage. I've had two partial knee replacements. Both shoulders are very damaged. Injections into shoulders helped for a bit. I lost all my toenails and experience severe tendonitis.
Both my rheumatologist and myself have decided against any more meds...they were horrendous! Diet certainly makes a difference. Sugar is a complete disaster for me. I mostly eat meat, eggs and fish. I'm planning on swimming. I've learned to rest when I need to. I have cold bath when things are really inflamed. It helps. Exhaustion is still an issue. Things are better than three years ago, but i still get pain and stiffness. I think with continued diet and life changes things will continue to improve. It's important not to give up hope. Some joints are already damaged, not much I can do about that. I do also take some supplements.
😊
Your experience sounds really rough - sorry to hear that. Glad to hear you're finding some stuff that works for you though. "I've learned to rest when I need to." - I think this is a really key point. One of the most important 'arthritis skills' for me is understanding your body. Like, when you should move in spite of pain, because it will help you feel better vs when to stop and rest. When food is causing you problems vs. when it is helping. etc...
Something I always say is that your disease is not your doctor's responsibility, it's yours - which is why learning as much as possible about it and about yourself is so critical.
I have lived with psoriasis since I was in my 20s. In 2022 I was diagnosed, it has been 30 years. Pain sucks.
I am a surgeon and was extremely enthusiastic about my profession .But I suffered fatigue multiple migratory big joint pains off and on and had severe low backache .No one diagnosed precisely what I had.I was put on vit D and calcium supplements along with painkillers.with the passage of time pain was aggravated and some suggested me to consult psychiatrist even.However at the age of 50 I was diagnosed as psoriatic arthritis.I had not a single painfree night and I think pain is the part of my life inspite of taking DMARD and knowing their side effects too.I left surgery which was my dream . Although I am earning well but not with my beloved profession.
Hey - so sorry to hear about your challenges, it's really frustrating how long a diagnosis can take when there is so much that can be done with an early diagnosis. It's terrible that you can no longer perform surgeries, I hope you manage to find meaning elsewhere.
I was diagnosed 7 years ago when I finally had psoriasis on my arms. It was stress induced and disappeared with a few uses of a topical steroid. PsA did not disappear. I had at least 5 years of no diagnosis, just pain with no relief. Thank you for being so open about your journey. This disease is not for sissies. You've inspired me to walk again. I'm hoping it will help me deal with the fatigue which has become worse. Sun is out today which always helps.
Glad to be of help and SO happy to hear you will go walking again. All I wanted to do with this channel was get 1 person out walking. Stay strong!
So, I am told that psoriatic arthritis runs in the family, so it is possible we are all related. Howdy Cousins!
Thanks for sharing. I too have been diagnosed with psoriatic arthritis. I have the spots on my elbows and knees. Joint pain in my hands, one knee and one elbow. Most of my stiffness and pain are in the morning and is relieved by movement. Flair-ups are a pain. Thanks again for the video.
No problem - flare ups definitely are a pain, hopefully you can get them in check!
I was meant to see this!!!! I have been dealing with this for many years. Your car it cute and my husband calls me Mona. Lol. You encouraged me to be assertive with my diagnosis
Glad I could help! Best of luck.
Terrific job of laying out psoriatic arthritis in layman’s terms while still being highly informative!
(Also, good call on the Social Distortion shirt!)
Thank you for your kind words! And I was lucky enough to see Social Distortion in Dublin last year - was a great show!
Thanks for the video, I have a few questions have you any damage inthe 20 years of having it? Do you ever drink alcohol or is that a big no? Thanks
No serious damage that I know of - I'm still very mobile and pretty strong (I have a strength training video you can watch to see how I approach that: ua-cam.com/video/nQq6O5wKPhk/v-deo.html). I think my main area of concern at the moment is my wrist and my right big toe - both can get pretty inflamed and sore, and my toe is swollen, so I'm looking into cortisone injections there and maybe getting a scan done, and spend a lot of time doing mobility work on them. I had some bloods done recently and my CRP (c-reactive protein - inflammatory markers) level was at 8, where below 5 is desirable, but 8 is still pretty low considering I have psoriasis/arthritis - so that is my main focus.
On your second questions, I used to drink regularly (like a couple of times a week every week), but not so much any more, maybe once every couple of months I'll have a couple of drinks. I've found that if I drink, especially heavy, I feel worse a couple of days later. So the day after I can feel great (other than a hang over) but the next day can be rough in terms of stiffness. That can also be because I tend to make poorer food choices during and after drinking.
Has anyone tried psychedelics to treat psoriatic arthritis or another autoimmune disease?
I have taken some psychedelics (mushrooms), but I wouldn't say it was to treat autoimmune disease. Though it definitely did provide temporary relief. For a few hours my mind felt like it was floating outside of my body - I had zero awareness of any physical issues I have. I would say the last time I had them was the last time that I felt no arthritis pain/discomfort. But I don't see it as a long term, ongoing treatment option.
Thanks Kev, my 17yr old daughter was diagnosed with the disease last week and despite being told not to Google by the consultant, I've been researching. Her thumb and foot have been very painful over the last 6 months. She's had difficulty writing during her AS level exams just before breaking up for summer. She's just started medication, Methotrexate, and some of the potential side effects are hair loss. I'd like to think that strength training and diet can help her and I took inspiration from your content. We were in the garage painting for 10 hours yesterday in preparation for the arrival of a squat rack, bench and air bike. Thank you.🙏
Finding the support from family snd friends has been a big hurdle most have not a clue what it is nor do they want yo know lol that’s about the time I do wish this condition on others of course just for a day
This is a real struggle - it really incredibly hard for people to understand what it's like, not just the pain but how the pain twists and distorts your thinking, making everything more difficult. Though not sure I'd wish it on anyone, even for a day :)
Thank you, been diagnosed with PsA in 2016 and it is helpful to listen to other people's journey and perspectives!
I've been living with it since I was 10. I'm now 76. My knees get worse when I'm walking and better when I rest. Just the opposite of what you said.
Hey, thanks for commenting. It sounds like you have actually damage done to the joint so this makes sense. With inflammatory arthritis movement really helps alleviate pain and fight symptoms, but with osteo the damage is done, so you need to think a little differently about it. Like consider walking in a swimming pool to get some movement in, but without the added pressure on the joint.
@walkwithkev What happened to my knee has confused me. I don't know what to do. I don't want to be crippled. I was just walking down the stairs in my home and my knee just crused. I can't tell you how bad it hurt. I was taken to the hospital. What really upsets me is medical people don't know very much about it. I was in severe pain trying to tell them about psoriasis and PSA.
After a couple years of being told I have plantar fasciitis. Physical therapy, steroid injections, an MRI and x ray. Finally was told i would be starting methotrexate. I didn’t believe them because i have such a small psoriasis spot. Now my wrists flare up, and one of my fingers gets pain.
Thank you for sharing your experience with PsA. My boyfriend got diagnosed last week and we were constantly in fear and anxieties. Hearing your experiences and how you dealt with it is giving us courage to battle the PsA with a renewed mindset. Wishing you all a better health.
HLA-B27 positive with psoriasis diagnosis since high school, 40+ years ago, with arthritis, nail changes, inflammatory bowel disease, etc.. I also have Ankylosing Spondylitis requiring surgical fusion. Trust your own instincts, I presented atypical and now I need surgical fusion.
Hey, thanks for commenting and sorry to hear about your struggles. I've been trying to trust instincts, but stay informed by data (ie. blood tests). As I've said elsewhere, it's a full time job - but I'm pretty determined.
Which medication you are for both
So glad i came across your video. Ive suffered with psoriasis for 15 years now on both knees and shin/calf areas, both elbows and scalp. This last 12 to 18months my pain and joint discomfort throughout my body has become much worse and extreme tiredness. I have recently had blood test for inflammation, Rheumatoid arthritis and full blood count all of which have been normal. A visit to a consultant resulted in a diagnosis of osteoarthritis but it seems much more than that to me.After speaking with My GP and a Physio my next step is to return to Musculoskeletal , its been 3 years since my last visit where they found bulging discs and facet joint arthritis. This condition is so debilitating its unreal and your video just confirms how i feel but getting that diagnosis is like jumping hurdles its so difficult.
What do you think on correlation between gut health and PsA
My opinion is that it's more than just correlation. Anecdotally I've found that when my digestion is good, and I'm eating a lot of plant fibre (broccoli, green beans, leafy greens) I feel a lot better. And we know that heavily processed food is bad for the micro biome, and I definitely feel a lot worse if I'm eating a lot of heavily processed foods.
There an interesting Huberman Lab podcast about the biome, and this expert Dr. Justin Sonnenburg (ua-cam.com/video/ouCWNRvPk20/v-deo.html) shares that the microbiome is critical for immune system function. PsA is considered an auto immune condition, so there is a connection there. In general, the more diversity in the biome the better, which includes managing inflammation.
There is also this idea of 'leaky gut', which is where something called 'tight junctions' in your gut, which allow for nutrient absorption, break down - allowing larger particles through, which then triggers the immune system. Eating fibre will result in the creation of short chain fatty acids by gut bacteria that will help maintain them (ua-cam.com/video/mxIH1nrfsbc/v-deo.html).
To try and answer your question, I believe that we are a hugely complex system made up of many complex sub-systems. We can't just think of things in isolation, it's all connected. Some research seems to suggest that gut health even has an impact on mental health, which could result in increased anxiety, which increases stress, which causes inflammation. I know that my psoriasis feels worse when I'm stressed. So gut health to me in hugely important - and it makes sense, because it's a vital system that is very much an integral part of the whole bigger system. It's where we get the building blocks of our bodies (nutrients, proteins etc...) - you literally are what you eat.
I'm in the midst of a flare-up now. My eyes feel very dry and my knees are really sort. I've been a runner for 12 years. I've done some really long events. I still get out for a run but none of the experience is pain free. I feel like I'm lugging around old bones. The funny thing is about three years ago when I was running, I'd go through the pain because I thought this is self inflicted - this is the "right type of arthritis." I thought my knees being sore was a badge of honour from long events. Now since I have my diagnosis I just realise my knees ache all the bloody time.
I know i have this type of arthritis, suffering tremendously but doctors couldn't ditect it , they are relying more on tests not on symptoms and the history i want to share. Seeking help from one specialist to another and going through tests after tests.
Your video shows me ray of hope. Many thanks and if you suggest anything for me, thinking about going back to rheumatologist or Arthritis clinic , totally confused.
The main blood test I had was a CRP (C-Reactive protein) test, which is an inflammation marker - but it can be misleading. I also had an MRI, this confirmed inflammation in my spine and SI joint.
I think it's definitely worth getting another opinion. I also think it's really important to communicate symptoms and triggers very clearly. With psoriatic arthritis, some of the main indicators are going to be: Pain that eases with movement and gets worse with rest, psoriasis, pitted nails, fatigue, pain that is worse in the morning and eases through the day. Pay attention to these things, maybe keep a diary, see if you can be precise and notice patterns.
Thank you so much.
I love u kev. You're so handsome. I also have psoriatic arthritis
Thank you :)
@@walkwithkev yw hun 😘😘😘
Good informative video… found you on Reddit. I’m undiagnosed but trying to get it.
So, you don’t take any meds? Just the walk, wat, breathe, lift, move and flex?
Thanks, No I don't take anything, other than the odd anti-inflammatory pill (ibuprofen), but I try to avoid them unless I'm particularly stiff/sore and focus entirely on lifestyle interventions. I also take CBD oil - which I've found helps, and cold showers too.
So: walk, diet, lift weights, mobility/flexibility work, breath work (for power and for relaxation) and trying to sleep well.
@@walkwithkev that’s awesome… that gives me hope too… I would want meds but I think I should be ok until my diagnosis
@@TechRevivalist Glad to hear it - also important to remember that not all meds work for all people and that their effectiveness can wane over time - so it's good to try and practice this stuff regardless.
I was diagnosed with PsA in 2022 and started on Humira. (Now on MTX and Enbrel). However, my first rheumatologist visit was in 2008, and in 2013 my ANA was pretty high and I was diagnosed with Undifferentiated Connective Tissue Disease and Raynaud’s disease. I have had Hashimoto’s thyroid disease since 1990 (age 11). I have a partial IgA deficiency. My inflammatory markers were always low but MPV is now high. My arthritis is now considered moderate to severe. I have inflammatory gastritis and pernicious anemia. I DONT have psoriasis except on scalp and ears, and a small patch on foot.
Also, I was actually hospitalized with hip synovitis when I was four.
I pray for your good health
Did humira did not help you with psa
it did at first, but then I developed an immune response to it and had massive flares with pleurisy etc. I switched to Enbrel and methotrexate. This worked great till I developed vestibular migraines. Now I’m on Taltz but it’s not as good as Enbrel.
@@nima_33 how long were you on humira
Totally understand your frustration one min I can move good then bamm next it like a Mack truck just hit me I’m down breathing excerise has been my only relief most times I am not into allopathic medicine so try be careful
Are you single? ❤
I am not. Engaged to be married later this year.
Can PSA cause foot drop, loss of knee jerk reflex, or damage to the axonal nerves ?
I think I have PSA, yet army of doctors and specialists I have been seeing never considered it.
I'm not sure about those specific symptoms - haven't encountered them before (myself or reading up on this stuff).
Im suffering this too. From sri lanka. Was on infliximab and stoped during covid. Now not on anything. Pain and stiffness are manageble . Nail changes++ and getting worse with a sip of alchohol 😢. Tendinitis and waight gain are the major concerns for me😢😢
Sorry to hear this - Are you able to move well? Like walking, stretching, maybe lifting weights? I think all of these things are really invaluable and will help with your main concerns.
Thank you for sharing, great information!
I’m 50 diagnosed ten yrs ago, I’m starting on immunosuppressive drugs very soon, the pain is too bad now and my fatigue is extreme, I work full time and it’s getting harder and harder… thank you for your tips, really helpful.
Hey, thanks for your comment. Sorry to hear about the pain and fatigue - I think the fatigue part is really underestimated when talking about arthritis, it has such serious knock on effects. Hopefully you find some relief with the drugs and they allow you to really get on top of this!
Get your testosterone level checked I have the same condition. Once you get your testosterone levels to high normal it’ll take about a year but you will get better. I am 90% better because of testosterone I could barely walk a year ago. Of course I change my diet to.
Watch your diët closely
How has your body reacted to the medication?
I’m happy for you but since pain is so relative , I’m assuming you have this under control otherwise you would have taken full advantage of the new biologics specially Cosentex … my suffering had been so bad that I welcomed a biologic. I think the risks are far less than the risk of the disease as it progresses. I wish you all the luck.
I addressed this in a more recent video about why I don't take the biologics - and you are right, I have managed to get this relatively under control (with many years of effort). In that other video I mentioned that I would not hesitate to take the medication in the negative impact this is having on my life got more significant. Not on a moral crusade against biologics or anything. I think a lot of the worst pain I had was before I was diagnosed (/misdiagnosed) and I spent a lot of time trying to get it under control - so by the time I was diagnosed they were less needed. But if I had been diagnosed sooner I almost certainly would have taken them straight away.
After years of trying to figure out why I am hurting in many of my joints, I finally found a rheumatologist that seems to think its psoriatic arthritis. We are doing tests over the next few weeks. After watching your video, you really made an impact on me and I think there is hope now. Thank you for being so honest and thoughtful. I will now dig into your other videos :) *subscribed!
Hey, thanks for the comment and glad to be of help, I hope you find answers, support and relief!
Thanks for sharing! I just got diagnosed last week and so I'm sorting through all the different things I might have to do so its very helpful to hear someone's perspective. I started walking regularly nearly a year ago before I even knew what was going on and it's really the best. I've had good luck with acupuncture recently, I'm a lot less stiff when I wake up these days.
I have been meaning to try acupuncture - thanks for sharing, always glad to hear of people walking and feeling the benefits!
I found your video after I was recently diagnosed. It's given me some hope. Thank you so much!
Hey, thanks for your comment - so glad I could be of some help.
So grateful
Do I need to have skin rash, I don’t but I have everything else
I actually started feeling pain long before I noticed any issues with my skin
The hip description is so accurate
My hip was the target of my first, and some of my worst flare ups, so I spent a lot of time thinking about that feeling :) thanks for the comment!
@@walkwithkev mine too. It never made sense. I was training x6 per week (kickboxing and running). Then as u described it felt like something had wedged in my hip. I had that on and off for years then the rest of my body followed suit.
Sounds like we had a very similar journey - hope you're doing ok these days and able to stay on top of it! I'd really love to try kickboxing and BJJ, but my body is not up for it unfortunately
@@walkwithkev mine never got really bad until is was 43. I had lots of aches and pains but I always thought that it was the training and fights. Then over a 2 week spell I could barely move. Dmards and biologicals haven't agreed with me. Still trying to work it out in my head. I do the regular walking. It's hard with my youngest son as I can't run at all nowadays.
Sorry to hear that, I can't run either but used to really enjoy it. If the drugs aren't helping, have you looked much at diet? I think high fiber has been critical for me (plants, not bread/rice etc...). Fasting has also made a big difference.
Thank You! Kev
After so many physios and tests yesterday a physio said I might have this psoriatic arthritis so he is asking my doc to refer me to refer me rumatoligist my back is in bits all the time I've osteoporosis osteoarthritis and scoliosis plus my left hand arm and shoulder my left foot and leg all swollen stiff and some pain. I have very little energy and my psoriasis flares up when stressed
Hey, so sorry to hear this - my psoriasis also flares up pretty badly when feeling stressed, which in turn makes me more stressed, which sucks. Are you able to walk or do any sort of exercises from your physio? And have you looked at diet yet? Hopefully the rheumatologist can help - but while you're waiting I think it's definitely worth looking at these things
@@walkwithkev yes I am put for good walks every day . I have not looked at my diet but might be a good idea too. Thanks for the reply .
What an amazing video! Thanks for putting this out into the world. I am curious as to whether you take any medications at all, or do you just stick to your six principles for management of your PsA?
Hey, you are more than welcome.
I don't take any medications at all, apart from the odd anti-inflammatory. Though I want to be clear - I don't advocate for or against any specific medications, everyone's situation is different.
I made the decision to try and manage this as best I can through lifestyle interventions. This does require a lot of time, knowledge and discipline - and I have the luxury of being able to spend time on it.
I believe the most important things to look at are diet, sleep and movement, then strength training. They have definitely had the biggest impact on me personally. For me, eating processed/sugary foods and missing out on sleep is all but guaranteed to result in pain.
I also believe that everyone with PsA should spend some time on this stuff, regardless of your medications, since medications can lose efficacy over time.
@@walkwithkev thanks for your reply. Sugar is my nemesis too, along with any kind of alcohol. No dessert, no booze! Booooo.
Hi Kevin, thank you for this. Are you practicing nutrition?
Hey - no problem. I'm not sure what you mean by practising nutrition, but I'm not a nutritionist or dietitian. I did get certified as a 'nutrition coach', but that's something a bit different - basically I've spent a lot of time reading up on nutrition and how to approach making sustainable dietary changes.
@@walkwithkev Thanks Kevin. Just trying to look for local alternatives to doctors.
Thank you for sharing!
You are a unique and inspiring person. It's surprising to me how few subs this channel has because the message you are putting out is priceless. My best friend is currently dying after 20 years of severe PA and now cancer. She's been obese for decades and on the biologic treatments which to my view maybe kept it at bay a little, but caused early onset of dementia, or something like that. She has always been a sugar addict. Going so far as to sneak out and buy very large quantities of candy bars etc. This and zero attention to nutrition and healthy diet is what caused the obesity, and I believe the PA and fibromyalgia she was diagnosed with. It has been heartbreaking watching her destroy her body and health over such a long time. Encouragement by me to pay more attention to diet and healthy living always fell on deaf ears and provoked anger. Clearly she needed psychological help but would never consider it. I implore anyone living with PA to take what is said here very seriously as it really is the key to managing your condition and living well.
Hey, thanks for the comment and kind words. I'm really sorry to hear about your friend. We live in a really challenging time for a lot of people. Emotional and physical pain, coupled with a food industry that feeds us cheap ultra processed, addictive crap can so easily lead to downward spiral that is really hard to climb out of. It really can be overwhelming to push yourself out side of this system that is everywhere around us and make positive changes in your life.
I'm sorry to hear about your friend. Why do you believe dementia was caused by the drugs rather than inflammation from PsA?
Lucy, try no nuts for 3 weeks. Then try only macadamia or no nuts period.
Very good video.
I can relate to all of your observations. On the gut input/output. I noticed the same things (and benefits of fasting). I got checked for SIBO and worked out sulfites were the main irritant. This was really critical info to help remove some of the guess work on foods I can reintroduce after having a severely restricted diet like you mentioned. Mongrel disease. I have also found the weights and walking and sleep and stretching are key. But my ankle is knackered atm and so frustrating I can’t walk. And I hate swimming- but you’ve helped me to be enthusiastic about getting walking again for 2024. Thanks for the video
Hey, thanks for commenting - so glad to hear you are excited to get out walking!
Very interesting thank you. Glad to see someone keeping PA at bay without long term meds.
I had a big flare up in my knee taken down with steroids. Now just stiffness around shoulders, arms/hands and sometimes back of thighs. Fortunately quick diagnosis of PA in months not years. Rheumatologist wants to put me on a DMARD. I’m reluctant but concerned about joint damage. Ongoing symptoms not too bad at this stage so wondering if I can reverse with diet changes etc. Any idea at what pain/inflammation threshold joint damage kicks in?
Not a doctor, so won't comment too much on drugs - but DMARDs are the one I definitely heard the most negativity around in terms of side effects. Personally I'd probably go for a biologic if the day comes. I do know some people that took a biologic which reduced their symptoms enough for them to work really hard on diet, exercise, walking etc... and now they are down to one shot per month, and his doctor said he might be able to come off it (though this wasn't PsA, it was Ankylosing Spondilitis).
In terms of joint damage, that's an interesting question that I've been trying to find an answer to. Technically, whenever there is an inflammatory response, the target of the inflammation suffers some collateral damage (this is true of infections, or a splinter or something like that). So the important part becomes 'how long does the inflammation last and is the body effectively able to clean up and repair afterwards'. There are some things that help with that clean up / repair process (like Omega-3s in your body) - this is an interesting read: www.nationalgeographic.co.uk/science-and-technology/2022/03/the-end-of-inflammation-new-approach-could-treat-dozens-of-diseases
Overall my goal is to reduce/elimination chronic inflammation and try give my body what it needs to recover. If I'm stiff I move, I avoid heavy impact on the joints and work on joint mobility. This seems to help a lot.
@@walkwithkev Thank you for your detailed reply about your overall approach & the interesting link. That’s an important point about giving your body what it needs to repair. I’d say I have stiffness rather than pain currently - just my shoulders permanently feel like I overdid it in the gym yesterday. So yes, it feels like it’s in permanent ‘repair’ mode, which I suppose is what inflammation is. I’m still on low level Prednisolone winding down (5mg/day currently).
Seems logical to keep any meds to the minimum and try to get off them asap (with diet changes etc). My Rheumatologist says I have to start on methotrexate & possibly another DMARD before I can try a Biologic. Currently experimenting with 3 days of fasting (to reduce belly :)) & wondering if fasting helps PsA at all. Other than that I’m looking into big dietary changes going forward.
Thanks again
Happy to help! In general I think you need to think about diet/exercise etc... regardless of the drugs, because whatever medication you are on, they can fade in terms of efficacy over time. It will also help you better deal with some of the side effects, if they effect you. Slow and steady with positive changes I think is your best bet for long term success.
For my shoulders there are three things that I've found hugely beneficial:
1. Hanging from a bar - however long you can comfortably do it
2. Shoulder dislocations - Search for a video on this, but basically you take a resistance band, or long stick, hold it with both your hands as wide as you need them, and bring it over your head from in front of you to behind you
3. Waiter walks - take a weight and hold it over head with one arm, then walk with it for a while. Repeat with the other arm. This is great for shoulder strength and stability
The key with all of this stuff is doing it regularly and not to the point of exhaustion.
@@walkwithkev Thanks - I’ve taken those tips onboard 👍
@@shadygagga1539does 3day fasting helps your PsA?
Walking is agony atm, my PsA is in my knees
I'm sorry to hear that, that must be awful! Have you looked at swimming, or even just walking in a pool? It will talk the pressure of your joints but allow you to get that vital movement into your joints. There are also some seated exercises you can also try - like sitting at the edge of a couch and just straightening one leg at a time.
@@walkwithkev I pushed through it today & walked for 30 minutes. I was only diagnosed yesterday after 7 years with 'osteoarthritis'. I think swimming & Qigon are the way forward. I'm keeping a Psoriatic arthritis diary so I don't forget how I felt physically & mentally. So glad I came across your vids, they're really positive.