My personal Ankylosing Spondylitis story
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- Опубліковано 13 чер 2020
- This channel will be mostly positive. Here I tell my personal pain story so my viewers can understand what my pain journey has been. when you dwell too much on the disease it can consume you like a vacuum of negativity. Focus on little wins and the good things around you. However always allow yourself to grieve your former self sometimes. Lets be here for each other
I went from 1998-2006 before I got a proper diagnosis. When I was tested in ‘98, the specialist told me that it was impossible for me to have it because it’s only a man’s disease. Sent me home with Vioxx and told me it was Fibromyalgia. As the years went on, the pain was getting worse. I couldn’t sit, walk, stand nothing. It was awful. A lot of damage has been done, especially to my neck. Finally in 2006 I found someone to help me. Since then, I am on my 4th biologic and many pills. Like you said, every day is a struggle that people don’t get. But I get up and keep going. Some days are worse then others. If I over do it I’ll be confined to bed for a couple days. Thank goodness my family is understanding!!
Thank you for sharing
Exactly!!! My doc won't test me just because he thought it was men disease
It’s a very tough struggle and unique to each person. I’ve had AS for 35 years through different stages, beginning with the typical lower back stiffness until I needed a cane. In my 30s going on 80. My first x-ray got the radiologist out of the booth to confirm how old I was when the film showed an old man’s spine. It’s a tough break at the worst time when your life is just getting good. On the bright side, I finally got the disease under control in my late 50s and no longer have much pain or difficulty walking. Chronic fatigue is a different story. It’s a legacy of decades of systemic inflammation. It’s much more of a buzzkill than pain because you can manage pain and treat uveitis with steroids. The medications can mitigate the illness but not repair the damage done. But the path forward is the same as it always was. Find everything you can that helps and keep your connections with your support system strong or make new ones. Find ways to live a meaningful life regardless. Get the help you need. 😮
well said ❤️
You’re totally describing my life exactly to a T !! I’ve been struggling with this since last year and I’ve tried to explain to my GP. I know this is not from my fibromyalgia or lupus ! He basically said if I hv AS i wouldn’t even be walking and then I come on UA-cam and FB and found tons of ppl sharing their struggles …and unlike other auto immune this one bear all symptoms exactly alike each other.
That sounds like a very frustrating situation you are in. It may be time to insist on a referral to a rheumatologist. My AS did not show up and bloodwork but only on x-ray which showed disintegration of my SI joint. The medication's available create such an improvement and quality of life so keep fighting to get them and to get a good diagnosis. I will go on forums and try to find people that live where you are and ask for recommendations for rheumatologists. I referred someone the other day to my doctor in Toronto and it was a life changer for her. Keep us posted
Was diagnosed with this at the end of 2020. The name scared me so I stuck my head in the sand and refused to research it. Shortly after I found Anthony William Medical Medium. Followed his program, not for AS, but for my symptoms. Found so much improvement already. So much is reversing. The debilitating leg pain and stiffness reversed. The instability and equilibrium problems, knuckle and heel bone spurs have decreased in size. I cut out fats almost completely, and lowered protein significantly and cut out meat and animal by-products.
I feel for you, I know your pain.
Im do happy to hear of your success. Wonderful news
Had an MRI scan in 2019 and told had AS, once you know it makes a lot of sense as to why you're always in pain and the bouts of fatigue. It's also hard for people who do not have AS to understand, as you look well physically to them. PAIN PAIN GO AWAY
Hi David. Thank you for sharing. I remember in university I had mono and every time I get in these bouts of fatigue it is as bad as when I had mono except for the fact that it doesn't last for a long time. The hardest thing to come to terms with is the fact that the pain will never go away but the medications and lifestyle changes we may can put a dimmer switch on the pain. That's why it's so important to talk to other people that are going through it. I'm hoping on this channel we can or all share ways we find what we CAN do and not focus on what we can't. Have you found any relief with lifestyle changes or medication?
@@ankyspondy771 Used to work for a large online company until they made me redundant with no explanation. Not working has helped a lot, meds only been on naproxen so far but still getting pains and flares but due to Covid not seen Ruhamtologists, have sent them a letter explaining the difficulties having lately so may need to change meds. I find avoiding people when grumpy and fatigued also helps and growing vegetables (gardening slowly). Thank you for your reply, oh I am in the UK.
You look well physically until you start to bend forward. I wss diagnosed at age 60. I had been seeing good doctors and all the signs were there but not one put it together. I had multiple herniated disks with calcifications formed in my spine and joints. My SI joint was not my worst problem but just a small part of the whole picture. Thankfully once I was diagnosed it was easy for my daughter to be diagnosed as she had started having the same problems.
I am a personal trainer with AS, my whole existence is doing “my own bizarre stretches” Thanks for sharing your story!
Was stiff and in pain for many years - had blood tests for A/S then had xrays and was told nothing is wrong then I stumbled upon a Doctor who could see something wasn't right and sent me off to a great Rheumatologist who immediately knew what was wrong. So after some trials with anti inflammatories that I wasn't happy about, he put me on Humira and in a few months my life had changed. No more pain (mostly) could walk again with ease, back to physical work, can sit down - bend, even craw though roof spaces again. Been on Humira for about 10 years now with amazing results Put up with pain for some 30 years until I was diagnosed properly, now 61 years old, I stand up straight, walk (can't run) sometimes get a bit of pain in my heals and now more mobile than some 60 year old that I know. Humira changed my life!
Oh Peter that is so wonderful for you to share your story with the group. You suffered for a very long time before getting relief. It's so important to find a doctor that really listens to us and is willing to try innovative treatments. I had the same experience when I started on my fist biologic. I am so happy to hear that you are enjoying a better quality of life now.
I've just been diagnosed with Axial Spondathritis. I injured my back in the Army by herniating three discs which is so painful with terrible sciatic pain. I've been getting horrible pain in my right hip and just had an MRI showing extensive inflammation. I cannot work and it will only get worst due to there being no cure. Luckily here in Australia health care is free so I haven't paid a cent. The worst is getting up! I'm like an old man yet I'm only 40. But the chronic fatigue is causing me to sleep for hours even after a night sleep and in some ways that just as bad. Cheers...
I'm so sorry to hear that. What kind of treatment are you on right now and what percent is it bringing the pain down?
@@ankyspondy771 I only just found out two weeks ago and have to have a blood test tomorrow to look for a particular marker. The specialist said it's difficult to manage and is often missed putting it down to back pain! But apparently exercise help but the problem is I'm too sore to move it just aggravates it even more. I'll find out next week what my plan will be to deal with this autoimmune disease. All I'm taking atm are anti-inflammatories but the doc said there are meds to help with the condition Thanks for asking
@@NathanChisholm041 yes there are definitely medicines to help. I felt very lost and so close to giving up before I got on a treatment plan that help me. I think the first thing I needed to come to terms with was the fact that nothing was going to take the pain away As much as I would have dreamed it would. However I had enough of a reduction in pain and fatigue that my quality of life became palatable again. The waiting game while you're suffering is a very hard part but hang in there and I hope they find a treatment plan that helps you. If you end up deciding on Biologics they do take a little while to start working in your body but once they do it's night and day. There is no cure but at least the medicine can slow the progression and maybe someday there will be a cure
@@ankyspondy771 Thanks for your words of kindness. My rheumatologist will be calling me next week when he reviews my MRI along with the blood test. Cheers...
I so know the feeling! hugs!
Thank you for sharing! I was diagnosed with AS two years ago, and I know what you are talking about. To keep my body moving I am practicing karate. I am also an outdoor photographer, and being in the outdoors helps too. Sometimes the pain is a 10X hell, and I can struggle to put my socks on. Other times I am functioning pretty good. Keep up the spirit, and keep on moving forward. Thank you for your channel!
Thank you for sharing how movement helps you with your AS. I think it will be interesting for people to hear that karate is an option. I love that you are doing your passion in photography in the outdoors which must be very fulfilling.
I've been on an arthritic pain journey the last few years. I've been trying to tell all of the Drs there's something else going on. Listening to you it's like listening to my own day. Especially the pinched nerve! I asked my bf to cut off my arm one morning. On nerve pills for it now tho I swear I have AS. Swear it. Of all the diseases I've been trying to figure out....I finally have an appointment with a rheumatologist in a couple of months time.
I so hope you find an answer soon. It took me forever to get a proper diagnosis. The sooner diagnosis comes sooner we can get on treatment to slow the progression. Hopefully your rheumatologist will do imaging and blood tests. Make sure the image or sacroiliac joint that's how I finally got diagnosed because nothing much showed up in my blood. I finally got him with a very well renowned pain clinic here in Canada so I will share What I learned. I hear they have a cannabis clinic connected as well as other therapies
My heart goes out to you, Im sorry for your suffering. I have AS, inflammatory arthritis and Osteoarthritis all over my body. My pain is not as severe as yours but I've had a continuous flare up for 9 months now where the pain has been moderate but previous flare ups have been more painful. I'm now trying different diets. I first started cutting right down on sugars and carbohydrates and now am trying a low salicylate and oxalate diet. I've heard of other arthritis sufferers trying paleo or keto diets, no sugar, no carbohydrates diets, carnivore diets etc. I need to flush out the toxins from my body so will be doing more fasting. Mickaela Peterson (Jordan Peterson's daughter) has had arthritis a long time and said she is now on a carnivore diet which has worked well for her. I also take regular vitamins and minerals like D3, B, C, zinc, magnesium, krill, cod liver oil, turmeric, klamath lake algae etc. This also helps me as well as doing regular exercises. I hope you find treatments, diets that help you. Everyone is different and you have to do what's right for you. Good luck.
Thank you for reaching out. Also thank you for giving such a well-rounded statement about dietary changes. I like how you mentioned so many different options and that different things work for different people. I have yet to find the magic food combination but it is on my list. A timely reminder
You’re so pretty!!
Hey AS sister! I can relate to everything you said. The morning stretches I do in bed...I’ve been doing this for so many years...just to get out of bed to start the day is a workout.Can’t do anything without a plan,especially showers and house chores. Take care 😍
It's so nice to feel understood isn't it? I think our pain tolerance must be so high right now. I had someone complain about tearing their meniscus and how they couldn't function for three weeks and inside I was thinking oh boy you have no idea. No don't get me wrong that is painful I have had it myself but at least it goes away when you are not moving and easily repaired with surgery
But in all fairness we only know what we experience.
The rule in my house is I need two hours before I am ready to start my day. It takes me that long to become functional and assess what type of day it will be.
Hey, I've had AS for 25 years and I've tried pretty much all the medication available. I also have Multiple Sclerosis. You are not alone and I totally feel your pain, I've had days where I am in so much pain I can't walk or even stand. What I have found that works the best is sulphasalazine and carnivore diet and when your ready exercise, predominantly lifting weights to build muscle mass which is pretty easy on carnivore diet. I believe the problem many autoimmune sufferers have, especially with AS, is that it starts in the gut, our immune system is reacting to the gut bacteria and the gut bacteria is not normal in us due to our altered genetics eg HLAB27. The combination of sulphasalazine and carnivore diet will heal the gut and destroy the bacteria that our immune systems are reacting to. There was a lot of research done by Dr Alan Ebringer at Kings college London where he prescribed sulphasalazine with low starch diet. However he never tried carnivore and carnivore helps take it pretty much into remission if the protocol is followed strictly. Look up Dr Anthony Chaffee, Dr Ken Berry and Mikhalia Peterson on UA-cam.
Im sorry to learn of your malady. I hope you can find better relief soon. I don't have 'anky spondy' lol but I'm just interested as a medical student. You have a great attitude and presentation and are a beautiful woman too :-) Thank you for sharing your experience with this. From Australia.
Thank you so much for your comments
Hi tin woman, I`m cement man, I always feel my hip and sacroiliac joints are made of concrete. good luck, hope you find some quality of life
So sweet
You are so kind
Thanks for sharing! AS truly is a an ongoing war we are in. We do the best we can with medication, lifestyle, diet and supplementation to push through. ♥️
That's so true Manny. It's nice to also be part of a group of people to understand what you are going through. Keep up the good fight
@@ankyspondy771 yes, absolutely. Do you also post these videos on Instagram?
@@innyc001 No do you think I should?
@@ankyspondy771 I was just wondering since I come on UA-cam now and then. But I am subscribed to your page now so I'll be following your videos and progress! Hope you are well. 🙏🏽
Its been 8 yr it's keep troubling but exercises yoga really helps me now
With ya understand, same boat.
You are so brave to share all this. I definitely can relate, just been diagnosed, in fact, just suspected because I do not have all the typical signs of AS.
Could you pet me know if you are having low grade fever along with your arthritis symptoms. I have it all the time, no matter what medicine I take. It is such a torture...
Now waiting for Cimzia, hope it helps
Hi Elena, thank you for reaching out. I don't think I low-grade fever and it is uncommon because your body is fighting all the inflammation. I don't remember if I had a low-grade fever but I may have
It's an awful waiting period and hopefully the biologic will help you. There are many out there so if one doesn't work you can always try another. Keep us all posted
@@ankyspondy771 Thank you for the reply:) we will see, I just got protocol for the medicine and will update you! This thing with the fever is the most annoying to me on top of all the pain and stiffness. Interestingly, doctors are also in looking for reason but there is no signs of infection. Hope the immunosuppressives do not make it worse…just in case there is actually an infection somewhere.
I am medical scientist and I thing this case of mine is the most interesting piece of science in my life 😂 could have skipped that part though
@@elenaruseva8559 Yeah You really didn't need this to add to your research
Thanks for the very helpful video, I was recently diagnosed with AS by a rheumatologist. I have a huge amount of pain in my hips, pelvis and lower back. In the mornings I am like a piece of timber and immediately have to work on my flexibility to get myself mobile. I have been taking adalimumab for six weeks now. Unfortunately my symptoms have not improved and may even be a little worse. The pain is much the same but is lasting longer in to the day. On top of this I have developed a mild itching rash on my lower legs. My rheumatologist has instructed me to stop the drug immediately and when/if the rash goes he wants me to try another biologic. This is obviously a worry; I was hoping that the adalimumab might improve my symptoms somewhat, to end up feeling worse is beyond disappointing. I do not want to end up becoming a guinea pig, but I have a feeling things could beheading that way.
Hi there. Don't worry too much because all the medication's are slightly different and you may not be allergic to the others. Let's wait and see how you do on the next one. The good news is it won't take as long for the second one to work as the first. Keep me posted and let me know how it's going. I was having a bad reaction to cosentyx but I have been OK with the other ones
@@ankyspondy771 Thanks for taking the time out to reply, I really appreciate it. Trying to find some kind of treatment path that is effective is a really daunting prospect. I guess I have to remain positive and hope a solution is found in the end.
omg I have advanced arthritis in my neck. I have all the symtpoms you describe. its so hard. Psychologically i have to force myself to stay strong so i dont give up. I wish there was some type of support group for this because its really tough to deal with chronic pain psychologically. Especially if your not retired and still having to work full time.
I totally understand what you mean.
@@ankyspondy771 have you ever had spine surgery to help with the pain? If so, did it help the pain ?
@@imveryhungry112 I had spine surgery on my neck and it made a massive difference in my pain. I am hoping to get some on my lower back in the future the recovery was tough but the pain relief was about 75% down.
My neck is 70 percent better after surgery
@ankyspondy771 that's good I might have to get spine surgery too. It sucks but it's life.
I was diagnosed with this at the age of 24, I had managed to lead an active lifestyle for the most part. Now at the age of 49 I am dealing with nerve pain in my back and right leg which is brutal at times. I understand how you feel.
Thank you for sharing
diagnosed when I was 22 now 70 I am painless now don't know why
Well that is a wonderful thing 😊
Which medication taken bro
you r so prettt!
thank you
I was over the moon to finally get a diagnosis but that was met with pure depression when i was told there was no cure and it will get worse. The biggest and hardest thing i have going through my head is i wanted to finally one day enjoy retirement im 44 single dad with 3 kids and now its going to be a case of working till i cant no more then what. Things are painful now i have good days still but there is this feeling of impending doom that creeps over me. I would love to hear stories of whats worked for many of you
I completely understand how you feel. I felt the same way at first. It takes a while to get your head around it. I am 55 now and I have the disease enough under control with my medicine that I only go through flares once in a while. I have gone through periods when
I wanted to die because the pain was so bad and then other times where I was afraid to die because of the disease. I've learned to push the negative thoughts out of my head most of the time. You will get there. Most days I have a good seven hours of feeling really decent. I've learned to go to bed early and get enough sleep. I've learned to stretch and keep moving even when it hurts so that it pays off in the long run. You will start to build a routine and learn about your body. I am 10 years ahead of you and I can tell you that I enjoy life most of the time. For the times when I get really negative I try to think of an amazing memory from my past and every time I start to have those thoughts I make myself think of the nice memory. It actually works more than you might think. I also do a little dance every morning to here comes the Sun by the Beatles. The words really resonate with me. Especially the part when it says smiles are returning to their faces.
@@ankyspondy771 Im really happy to hear that you mostly have a handle on it. For me i had just come off 2 years worth of surgeries for another condition and about a month after when i was feeling like i had finally been able to put the previous 2 year behind me i got up of the lounge and felt the worst pain in my back i could barley move but i thought it would just go away, its gotten better but never left i have a physical job so the last 4 years now i have had put myself through what i can only describe as hell to pass all targets and objectives set by work which im happy to say i was able to do. But as of today im feeling a serious lack of motivation to keep putting myself through it. Finding another job isnt an option atm either as i said single dad 3 kids also an only child with my parent being 84 and not doing well themselves. Just feeling overwhelmed i guess. For me right now i can lay down on my back with out too much of a problem as long as i dont turn on to my side as it feels like im ripping something in my back and then as you would know getting up in the morning is so painful till i can walk it off and have a shower. After that its a coin flip whether i will feel ok the rest of the day or not. Curious to know what has worked for other people and you. Thanks for the reply
I have it also since I was 30 and now at 78 let me tell you there is one thing I am dealing with which is worse than everything else. My rib cage is so stiff that breathing is an effort. I'm afraid I will be going on oxygen soon. DO whatever you can to keep your rib cage loose
Oh no Ann I am sorry you are suffering with that. I often worry about my heart and inflammation but I never thought of rib inflammation and stiffness. And I should look into that. Is there anything you can share with the group of ways to improve that?
www.healthline.com/health/ankylosing-spondylitis/managing-rib-pain
It's interesting that swimming comes up in this article. I find swimming good for my joints but now I realize it may be good to strengthen my breathing as well. Thank you so much to Ann for bringing this topic up. The next time I go to my rheumatologist I will ask for more information
Hello. I also have the same problem, although yours sounds worse. I have a swollen rib joint (tietze syndrome) and it hurts so much when i walk, lift anything, or basically do anything. Other rib joints are also slowly getting affected. Have you found anything that works for you? If so, please do share. And best wishes.
Thanks for sharing - hang in there, you're not alone.
Maybe you have the same situation i have talking about the stress in muscles and a lot of fatigue , i recommand taking magnesium and stop eating sugar this is what m doing and it helped
Pain, pain, and more pain. My best friend is my pain management doctor because without it I would be bedridden. AS takes any injury in the joints, spine, tendon attachment points and ratchets the pain up to a 10. Winter makes it a thousand times worse so I am not looking forward to the colder weather coming in. I can't take nsaids which makes things worse. By about 5:30 at night I am done and I am in bed, not asleep but in bed. But then I can't sleep so I have to take tylenol pm or melatonin to sleep through the night, except for getting up 10 times to go to the bathroom. The biggest thing is that I am very prone to is overuse pain even if I don't really overuse a body part. So you have to make sure you move around because movement is your friend and being sedentary is your enemy. So my entire pain management medication approach is to knock down my pain enough to make sure I can move and get exercise without overdoing it. If I overdo it I will be down hard for three days so that's the key. My lower back was destroyed by operating boats in the Coast Guard so AS didn't cause that but it's exacerbating the pain I feel by at least 50 percent.
That is a brilliant way of saying what we should all do. Movement is imperative for us so I love how you said you just do things to the point where you realize that anymore will keep you down for days. I'm going to try to remember that when I am close overdoing it
Overuse pain for us It's so different than the average person. Such seemingly simple things can push you over your limit. I find the winter is worse on those days that are really damp cold. Thank you for sharing
@@ankyspondy771 I think people go into pain management with the wrong idea of what that particular drs office is going to do for them. At the end of the day they want to reduce your pain level down to manageable level which allows you to get up and move around and thus allow those natural pain reducers in your body to work and help with pain management. As an athlete my entire life I crave that competition and extreme exercise which gives you that release afterwards but I can't get there nowadays so I just ask to reduce my pain down to a 5 or 6 so I can walk and move around. People always go into the pain management drs office with the expectation that they will just get meds (that work, no denying the meds do work) and be on their way but that will be short lived if they don't keep doing things to make their situation better fulfilling their part of the agreement. Whether its pain counseling, physical therapy, massage, acupuncture, doesn't matter just need to always show them and yourself that you are trying everything available to you to make your pain better. If you have that mindset things will work out okay for you...just use it as crutch to make you feel better and it won't last.
@@mattw919 I agree with you. Proper weight management definitely helps because extra weight on your joints makes things worse. Also moving around helps make things better even though it hurts at the time. A pain specialist told me a pain reduction of 50% is considered a success
@@ankyspondy771 madame ! Namste 😌 🙏
I m frm india, also sfring n strglng
@@harshjoshideepak I'm sorry to hear that. Hang in there. Hopefully more good days than bad or ahead for you. Welcome to the channel
I have axial spondyloarthritis. Is it the same as AS? Or does it lead onto AS? I have terrible stiffness and pain in my low back every morning. I drive to work with a hot water bottle. Seems to relieve it alot. Usually go by the time I get to work. But sometimes it's a 8/10 pain in the mornings. Debilitating
Hi thank you for asking a question. I don't know if it's the same thing. I'm sorry you have pain and stiffness. That is very difficult.
Do you find that respiratory viruses exacerbate the pain in your joints? I have early stages of osteoarthritis in my spine and shoulders and experience this tendency.
Yes I definitely feel I get joint pain with virus. I also find it happens when there is snow outside
Thanks for sharing. I’ve just been diagnosed. I’m 37. Pretty sure I’ve had it my whole life... in different forms. Seems to have gotten worse after having kids. I’m hoping to find more natural ways to prevent inflammation first but docs have mentioned Humira. I’m scared to lower my immune system right now w all of the craziness. 🤦🏻♀️
I got diagnosed around mid forties. I hear ya. I had JIA so was probably AS all along. The biologics like Humira slow the progression of the disease so I chose it for that reason and they helped with so much of the pain. It does come with risk like any medication. on the positive side I found it slowed down my appetite which helped me take off the 20 pounds I wanted to put less strain on my joints. I don't know how common that side effect is but I have it with all of them that I have been on.
I'm 30 had AS for ten years. I have tried it all and the natural things work best. They're really the only thing that works for an extended period of time. Meds have side effects and stop working after a while if they even work at all. After 3 months straight of heavy vaginal bleeding I couldn't take anymore anti-inflammatories. I was sick of taking 1000 different meds and them just making things worse and was contemplating going on disability maybe even a little suicide. I went on a super strict autoimmune paleo protoco diet as my last hope. Now I'm back to climbing trees and cutting them down. It's definitely a sacrifice but I would do anything to make this go away. Stay away from starches. Exercise and heat are the other things that help. They work best and just so happen to be natural. Before you wreak havoc on your body with medications try diet. I wish I would have started there.
@@kimberlyk2530 what is low starch?
@@treeyellow4627 my doctor recommended there's a London AS diet
@@kimberlyk2530 thx! Sry is that a book? I will Google it
Are you already using bio med such as tnf blockers? I’ve been with sulfazalazine since 2002
Hi Adi. Yes I started on a biologic in approximately 2016. I started on simponi and then that wore off and then I moved to Humira and when that wore off I started on embrel. They were a miracle for me as far as relief and took my pain down about 50% which is what is is expected. Everyone eventually burns through these drugs because you build antibodies to them but my body builds antibodies add and unusually fast rate. Most people are able to stay on one of them for a very very long time before moving to another. I keep an eye on the research hoping for more things on the horizon. Please feel free to ask any more questions
@@ankyspondy771 Thank you so much, hope in future they will finds a better medication and dont cost as much as well, hope your insurance covers it as well
@@ShamuAdism yes my insurance covers it right now because I am working for a company with a good insurance plan
I do worry some day when I no longer am working what will happen as far as cost
Am in a wheelchair now with a ankylosing spondylitis the pain is so bad along with my IBD it is very painful
I am so sorry to hear that you are in a lot of pain. I hope you can find something to give you relief. Was it your back that ended up putting you in the wheelchair or the si joint?
@@ankyspondy771 it is my spondylitis and my chronic nerve pain after cancer I had xx
I'm also a ankylosing spondylitis petient since 3 year.....😞it's really painful... I'm only 25 year old...😑
I am so sorry to hear that. What kind of treatment are you on? I think you'll find the pain flares will come and go. I hope so anyway. Im glad you are here
Did you also have digestive troubles like Crohns type symptoms?
I have always had IBS symptoms, but I was never diagnosed with crows or colitis, and I have had a bunch of tests.
I am also suffering with same and un salfasalazine now.Do you get any pain in back portion of spinal cord that is in Thorasic joint area?
Yes I do get pain there as well. My biggest struggle is in my hip and SI joint area, my lumbar and my neck. I'm starting to have trouble with one of my shoulders as well. Too bad we can't just get a bunch of replacement parts and be on our way
@@ankyspondy771 Are you taking treatment under NHS in uk?You can try indian Yoga by Ramdev.I think you are taking TNF blocker injection. It is expensive treatment but habit forming medication.Tomorrow i have an appointment with rheumatologist in Stamford hospital and I think doctor will suggest sane injection to me also.My e perience is different than you.
@@debmallyasanyal8611 I am actually in Canada. Fortunately my medication is covered under my private insurance plan with the company I work for. I am on an anti-TNF injection. It is very costly but it is not habit-forming. If you stop the medication your pain will come back but you will not have any withdrawal symptoms. The anti-TNF's do you have risks associated with them however someone needs to come to terms with those before starting. However, I could not live a normal life without them so I have accepted the risks. I would rather live a shorter life (although it may not cause me any harm but I know it could possibly) with less pain than a long life with unbearable pain.
The oxycodone I have to take on the other hand is definitely habit forming and has to be used responsibly and I would definitely go into withdrawal if I stop taking that as anyone would because it binds to the opioid receptor even if you are taking a prescribed dose.
Keep me posted on how you are doing. Lyrica Is also something you have to withdraw off slowly because it also causes some kind of withdrawal effects.
Thank you for the recommendation on Indian yoga I will check that out
Everyone tells me that to overcome the pain, I must always move. The problem is that when I move or do any effort, I get severe pain, fatigue and exhaustion, and when I walk for a small distance, I gasp in addition to the pain.،please could any one give me advice
I know how frustrating it is because even though I've gotten someone of a move in routine I can fall off the waggon very easily due to the fatigue and pain. Of course always check with your doctor, the way I started was to do a few stretches every day and then every second day I would add a few more and so on and so on. I also started out with short distance walking and then slowly built up to a 30 minute walk. I still know if I do 40 minutes or more I will have terrible SI pain. It hurts sometimes so much I want to cry when I start my yoga online and then I slowly loosen up. It makes a huge difference in my pain level on the days I stretch properly and do yoga. Maybe you can use the assistance of a walker why are you woke up your strength?
My GP fobbed me off for 20 years from age 16 finally diagnosed and have had 2 hip replacements since on left. Side age 38 and 57 along with new medication 😂😂😂
geez
Did AS show in your blood tests?
No, it didn't, just on imaging
👍🙏💜
Dali je Vid ostecen nekom od bolesti AS??
did your chemical meds work to stop bones attach to each other?
This is hard for me to say because I only started on medication in 2015 and it was a very late in life diagnosis so I had a lot of progression already. From what I understand the medication slows down the progression but does not stop the disease. However if I had been on treatment earlier I would probably be in much better shape than I am now 55
@@ankyspondy771 good luck always .. everything is possible
Pain and fatigue reduction were huge
I'm also suffering this disease. It’s so pain full
Anky Spondy how you overcome from this disease?
Please look for Spondilitis Ankilosant what means and how manifests....dont be angry at my clarification....i recognise your pains and hard simtoms but try to understand what i say ! Have my consideration and frienship !
I am not sure I understand what you are saying?
At what age you were diagnosed?
Juvenile Arthritis at age 16, Ank Spond around 45
@@kristenpresta9311 you are a strong 💪 person. I was diagnosed in 2009 at the of 18. Going for hip replacement soon. Thanks for reply. Your word reminds me that I am not alone and give motivation.
Please anyone help me i got AS POSITIVE how to reduce pain which treatment is better please suggest 🙏🙏🙏🙏🙏
i'm sorry to hear about your diagnosis. There is an nice community online to get advice from. Every medication works different for every person, so always be mindful of that when taking advice. I take Celebrex, Lyrica, Remicade, and I find if I don't do any kind of stretches or move my pain gets worse. I hope that helps.
@@ankyspondy771 how was your health right now completely cured or not?
You should try low starch diet(London diet)
Can you pls explain low starch diet
Are u taking biologics??
Yes I have taken Simponi, Embrel, Humira and Cosentyx. They all worked on me
Is anyone here whose hip are involved as well?
yes mine are on both sides which makes sleeping tough
Yes, my si joint on my left side has permanent damage
Use homeopathy it give me 80% releif 👍 also early diagnosis prevent all complications with homeopathy
Thank you for sharing that. I didn't find any luck with that route myself. However I am glad that you did
@@ankyspondy771 I go to many doctors but I could not get relief because in homeopathy every individual need different medicine according to their body and mind symptoms my uncle also suffering from ankylosing spondylitis he also get relief from homeopathy I choose my medicine myself my first medicine is RHUS toxi 200 potency and bryonia alba 200 potency 2 drop twice a day and their start miracle but slow and study it give me 60 % relief so I have to say find your on medicine according to your mind and body symptom and stay positive and do light yoga and exercise , avoid food like non veg, alcohol,smoking, also stay positive AS also effect brain and increase sorrow , grief , depression so stay positive god help you 👍
dude share the medication your on ...
Oh I would love to Lester but I can't because I work in the industry and the company I work for makes one of the medicines. It would be a conflict of interest and I could get in trouble. Sorry about that. However I can say that I have been on four of the injectables for AS and all of them worked well it's just they wore off overtime for me personally because mine is very aggressive. The only one I didn't find very effective was cosentyx because the side effects outweigh the benefit for me. I felt like I had a flu for two weeks out of every monthly dose
So I only felt good for two weeks out of every month. Yuck. But if I had no other choice I would've stayed on it
@@SaturatedCat First I want to wish you the best of luck with your life changes and I hope that they work out fabulously for you. Secondly, yes I have been on quite a few and I didn't notice much pain in between medication types. It was like one medication just took over from where the last one left off. It's frustrating when one medicine works well for you for so long and then you have to change. I have only tried one out of four that didn't work well for me and that was cosentyx. Please keep me updated on how you are doing with your switch. Each medicine is such a personal experience. However being on four different medications I can tell you that I have never noticed much of a gap in my relief and I hope the same is for you
I will look at the other site you mentioned. if you start one, send me a message so I may join. Thank you for your kind wishes
Embrel
If you can turn vegetarian if not try to add veggies in your diet and I don't know you believe in ayurveda or not but it works amazing you can try suggesting you based on my personal experience
I think I can definitely try that. Right now my 23-year-old son lives with me so he really enjoys meat but in the future he will be moving out and then I can make a commitment to the vegetarian lifestyle. Thank you because I am willing to give different diets a try. I'm so glad it worked for you
You get a full nights sleep😉