Diagnosed with a Chronic Autoimmune Disease | My Ankylosing Spondylitis Story
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- Опубліковано 29 чер 2021
- This is my story of being diagnosed with ankylosing spondylitis. This by no means is medical advice or information, just my story on what happened to me. I hope this helps enlighten you on what the past year has looked like for me, or helps you if you were in a similar situation! If you would like me to go into further detail about my treatment plan or how this has affected my dance career be sure to let me know down in the comments below!
To keep up with what I’m doing on a daily basis make sure to follow me over on Instagram @dance.Jillian or @jilliankrekel! 
I’m a former competitive dancer (now medical school professor) and third generation AS sufferer. It’s a tough world for people with this condition. Sending love.
💕💕💕
Get the book: "No Grain, No Pain" by Dr. Peter Osborne.
Game changer!
Best of health to all.
Thank you for sharing your story, I am dating a wonderful woman who was diagnosed with AS a few years ago and before meeting her I didn’t even know what this disease was, but hearing your story help me so much to understand the gravity of the situation. I hope we can find the HUMERA medication accessible to her. Thank you for sharing 😊😊😊
Humira was a real life saver for me! Best of luck to her!
Hi from Australia 😊 I'm a 57yr old woman, just been diagnosed with AS, a MRI shows i have "active disease" in my sacroiliac joints. I had already started Humira about a month ago for RA. I am positive for the hla-b27 gene. Thankfully here Humira is only $30 a month (2 injectables). I'm also on plaquinil, Sulfasalizine and meloxicam. Im lucky to have a great rheumotologist. All the best to you.
I hope the humira helps you! It was a lifesaver for me!
30 bucks? Wow! I didn’t think I’d tell anyone this, but you’re lucky to get this (disease) in the right place 🙃
i'm about to go down the rabbit hole for AS as my heart surgeon saw scans of spine and told me to seek a further help as some of the spine is fused already. any advice for me as i'm in australia in se qld
Thank you for sharing your story. I began mine back in 2009. So many doctors passed it off as nothing serious, "getting older" or Fibromyalgia. I'm just now finding out, at 46, that it actually is AS. I have 3 pairs of vertebrae and joints that have fused. I'm so glad you were diagnosed at a young age before your joints have permanent damage. I wish you the best! 😊
Thank you so much! Glad you finally found a diagnosis!
Unfortunately my being diagnosed early didn’t help with long term damage. So far none of the meds have worked. I’ve tried every medication out there and nothing has help stop the damage. Now both my kids have it too and are struggling with their health at 30 yrs old. My Dr. took pictures of my hands the other day to show his students at medical school cuz he said now days they dont see this much damage to the joints because of all the great new medications out there. Unfortunately nothing has worked for me.
@@brigetterossi292 sorry to hear that 😕
@Lillian Maya can it cure arthritis
@Lillian Maya thats impossible u can't cure arthritis with out proper diet exercises along with medications
I, too, am an AS warrior. 💪🏽 I’ve had AS for 29-30 yrs. I wasn’t diagnosed until about 6 yrs ago. I started out having pain in my SI joints at about 19-20yrs old. It was very painful at times finding it hard to walk. I was always active and a bit athletic until my pain worsened and spread to my lower back, after I started having my children at 21 yrs old. I don’t take any anti-inflammatory meds because I don’t want any side effects. The pain for me has always felt like I maxed out on a workout and stayed sore with the body aches and stiffness. I’ve been able to manage most of my pain through what I eat or don’t eat and of course with daily stretching and activity. A few yrs ago, I couldn’t get out bed without literally rolling off my bed onto the floor and crawling to the bathroom to pull myself up. At that time I became a pescatarian and was eating clean and was able to maintain a good workout which really made a difference. But since, because of my work schedule and always being busy with my children, I don’t eat like I used to or work out at all. So my pain has started growing. Recently, the pain has spread to my neck and shoulders, knees, ankles, wrists, and elbows. Sometimes my fingers and toes. As a result I can no longer maintain a run and my equilibrium is off. I’m also starting to develop the dowager’s hump. 😩 which I hate the most. Although, I’m sure I could reverse it if I just get back in the gym and work on my core. Which brings me to why I don’t or haven’t yet. I’m always so tired now. Extreme fatigue has kicked in over the past year. 🙄 I have a very hard time getting up every day because I feel so lazy and just want to sleep. So working out is not on my to do list at this time. 👆🏼Thank God I’ve been blessed to maintain my flexibility! 🙏
Some pointers:
Eat clean or healthier
Drink lots of water
Exercise/stay active
Stretch 2-3X a day or more
Don’t sleep with a pillow and sleep flat on your back
Take your vitamins/naturally as well
Unfortunately, no more heels ladies. I wore heels up until 5yrs ago. Now I mostly wear sneakers. 😏
Do your damndest to maintain a good posture or it will go fast.
God bless us all.. 🙏❤️
So sorry about all your pain! It’s definitely hard to explain to people who haven’t experienced it themselves! The medication has been a life saver for me as my job and waged solely relies on my ability to stay active! I definitely do what I can to keep flare ups down! I drink A TON of water, I eat pretty clean and healthy but do enjoy food and indulging, I exercise a ton, and stretch almost every day as I am a dance teacher and professional dancer! Good luck to you and your AS journey!
What is your condition now native empress
@@majiddar5695 greetings! My pain level is bearable and manageable. I always feel it in my back, neck and shoulders. Once in while in my hips/SI joints, mostly when I sit or stand too long. I’m going to start working out again as well as changing my eating habits. I need to so I can feel better. I’ve been on both sides of the tracks, so I know what I need to do to be more comfortable and energized. I’m almost 50 so I have to change before old age really kicks in and makes it harder. 😊🙃😏😩😵💫😬🙄
@@nativempress thanks I want to know about this disease someone says after age of 45 then the disease naturally goes weak is it right and also please give some tips about your meals and exercise
@@majiddar5695 hi! I am currently doing very well! A few flare ups here and there which I was able to combat by taking strong anti-inflammatories for a couple of days bringing things back to normal!
Previous dancer here! Currently waiting for my results. The stories on here and google are terrifying. Glad there’s hope. Thanks for sharing your story.
I’m so glad your getting tested! Getting diagnosed was the best thing that happened to me💕
I've been dealing with symptoms for 2 years, couldn't get any doctors to listen to me. I was finally diagnosed with RA and Sjogren's last week, but it took forever because I have seronegative RA, which means it doesn't show up in my bloodwork.... but I had to laugh when you said you got 11 vials of blood taken. My rheumatologist was on a mission and took 22 vials from me! I took a picture because it was the most I've ever had taken at once. I didn't pass out or anything, but I was definitely lightheaded when I stood up! Lol! I'm glad you got your diagnosis. ❤
Thank you so much for sharing!
I was a professional dancer and got diagnosed with ankylosing spondylitis too! Glad to have found someone in the same position
Wow! Are you still dancing?
Although I’m not a dancer, I’m a drummer, and was just recently diagnosed(though I’ve had symptoms and tested positive for hoa-b27 over ten years ago). Wishing you guys upmost healing 🙏🏼
@@dance.jillian963 I am not, but mostly because I had some other issues that may or may not be AS related and I also tore my labrum. I still take class and teach though, just not full time in a company anymore
I was diagnosed with AS about 25 years ago. My mom had it so I got diagnosed in my early 20’ where it took her 25+ years for a diagnoses. I’ve had 4 back surgeries and on biologics that aren’t helping at all. The pain is daily and never goes away. It’s worked up my spine into my neck now too. Even finger and toe joints affected now. I’ve never had it go in remission and many times in my life I’ve had flares where I can’t walk at all or barely stand without severe back and leg pain. I was a big athlete and go days without being able to walk or sit without pain is hard. Just diagnosed with psoriatic arthritis now too. Sorry you are having to deal with this disease too. It’s horrible!!!
I’m so sorry to hear this! Luckily the biologics are working for me currently and I’m really hoping they continue to work❤️❤️❤️
Im at the point where i have met my rheumatology doctor and did some blood samples, waiting for the results and like you i had never heard about ankylosing spondylitis until my doctor mentioned, still in a bad place but im 100% sure that this is whats wrong with me, i have been stuck to this phone screen making my own research about spondylitis and everything makes sense now all the pain, all the times i have been to the doctor office complaining about pain, been to so many doctors and nobody could figure this out except my last doctor, im greatful that this certain doctor took the time to really listen to me and care, i wish you all the best and i find comfort in that you found a medicine that works for you, hoping i will get to that point aswell, have a nice day 😊
I so glad that you are finally starting to find some answers!! Info about AS is hard to come by!
I'm so beyond thankfull that I found your video and reading these comments I now know that I'm not alone. These past three years was like hell to me and a few months ago I found that I have AS. It didn't hurt me as much before as it is now, but I'm hopefull now that I can make a change, so thank you and all these women, and I really hope that we can all be pain free someday❤.
I’m so glad you have a diagnosis! It makes things so much easier and gives you options for treatment, best of luck to you💕
Thanks for sharing your story, its always nice to have people to relate to😊 you're very pretty btw!
Thank you!
Thank you for sharing this. really Jillian! It's been a journey for you and I am glad you stood you're ground on finding what was going on! be as strong as u can be! I am HLA B 27 positive, I have all the symptoms of AS and its been hard to diagnose it because you know " it doesn't look like it could be this serious " the doctors say. Even had one that said he doesnt think i need a diagnose! I feel alone in this, and this type of videos warm me up and shade my sadness a little. not having the answer is daunting. lots of love for you :3
It definitely was difficult, but much easier once you find yourself a good doctor who is genuinely concerned about your well being and quality of life! Wishing you the best, AS is no joke and no fun! 💜
Hi dear,I have started my Humira (Adalimumab) 3 days ago..Always Stay positive like this ❤️❤️
This video comes at a perfect time! Thank you for making it, you never hear anything about this illness from a woman. I already have an autoimmune disease and have been experiencing new awful backpain that brought me to tears many times for 6 months now.
It comes and goes but is always my sciatic joints.
I have an appointment with a chiropractor next week and I hope they can help.. even if something is just out of place the pain is excruciating and I would like it to stop. Your video was very informative :)
Hope you get some answers! That’s the worst!
I'm not sure if a chiropractor would help. I tried it once and felt like a spring lamb, bouncing all over the place. But after 2 to 3 days the pain was back, worse than ever. Manipulating bones that are possibly fusing could do more harm than good. Best of luck though. 👍
I’m so glad you did this video ❤ it’s so hard to find life stories with AS. I was diagnosed in November this past year after almost 8 years of trying to figure it out. I had given up hope of anyone figuring out what was going on. I found a random urgent care doctor one day and he told me that he wouldn’t stop until he figured it out. Sent me to the Rheumatologist and two visits later I had a diagnosis ❤
I’m so glad you finally got answers!!!! It’s so great when you find the doctor for you!
Thank you so much for sharing! I also just got diagnosed recently with AS after having the SI joint pain for 10 years, it only got worse from there lol....ugh! I wish you the best!! 🥰
Thank you! No fun at all, but it’s good to finally get answers!
Finally someone that has a video about AS that sounds like me! I also went through multiple symptoms & a doctor that didn't listen. He told me to diet & exercise. I left in tears! I finally went to him and demanding blood work after suffering for years. I had a positive ANA and he finally referred me to a Rheumatologist. She knew right away it was AS. After, all the blood work I got the results, HLA-B27 positive! Finally, I had an answer. Even though it is not a great result, it was something & proof I wasn't crazy! I started Enbrel injections immediately. Enbrel gave me back my life. Three years later I am now starting to struggle with Enbrel not working as well, but we are not at the point to try something else. I will start PT again soon for my shoulder for bone spurs and I am hoping that will help. Thanks for this video! You're not alone!!!
So glad you got some answers! Someone I know just got off enbrel after many years due to it starting to be ineffective. Switched to humira and starting to feel better again!
Thank you so much for sharing information. I'm a physiotherapists just diagnosed with as before 3 months. All the best warrior. Stay strong.
Best of luck to you!
Thanks for sharing, I have a rhumatology appointment coming up to discuss similar issues. aglad to know your treatment is working so well for you
Good luck!! Wishing you the best!
Stay strong 💪
From a fellow AS warrior!!
❤️❤️❤️
Very very similar presentation and background to my story. Down to how I kept thinking I “just have to do more PT”. I feel your pain! Genuinely
Right?! Ugh… Wishing you all the best!
thank you for posting this video, ive been having so much lower back pain & lumbar pain since last april, have barely slept for 2 weeks, and my grandma has this disease. Just got tested for the HLA-27 & it was positive. Still not sure if I have it but hearing your story literally made me feel so much better & not alone if I end up having it.
I hope you find some relief and answers soon! Being in pain is the worst!
My daughter was diagnosed a couple of years ago with AS when she was 20. She is going for Renflexis infusions every 8 weeks. She is very lucky that she was diagnosed quickly after her first bad flare.
Wow! I’m glad to hear she had a quick diagnosis!❤️
Stand strong you all. ❤
I got diagnosed a week ago, as per my xrays, they show the actual bone spurs waiting for the hlb27 gene results but it's better as i thought i was going mad. People do not care to understand what we go through, absolute torment. I will tell my doctor about the injection.
I’m glad you’re finally getting some answers. Best of luck to you!
I am glad they actually use the Antigen marker HLA-b27 to determine if you have it. WhenI was going through the mental games of being diagnosed it. They told me having a + result only ruled in the realm of possibility rather than a diagnosis of AS. I faced terrible games trying to get a diagnosis nearer 30 years ago. Thanks for your story, I hope those treatments work for you.
Thank you for sharing your story/journey! I’ve been dealing with this pain for almost a decade but no diagnosis yet. Did your HLA-B27 come back positive? Take care.
Hi, I got diagnosed with AS about 3 months ago and I can say that my HLA-B27 test did come back positive. Hope this may help!
Thank you for your brilliant video.
I’m male 50 and was diagnosed with Fibromyalgia 2 years ago. . No blood tests.
My pains are worse when I am at rest and I am very active. These symptoms sounds so close to what I am feeling.
I need to get back to my doctor.
Sorry you are still in pain! Hope you get some answers!
Fibromyalgia and Ankylosing Spondylitis are notorious for being misdiagnosed. You probably have AS and if you've been suffering this long you can probably see damage on an x-ray. You'll need a biologic which may give you relief. Ask your doctor to give you a blood test and check for the HLA-B27 gene. If it's positive, bingo
I fear I have as and am starting to look at see Dr for it. I have severe spinal and cervical stenosis. I can barely move sleep or walk any longer. Hope you are well and don't let it slow you down.
I hope you find yourself a good doctor, and don’t give up till you get some answers!
Thanks for sharing you story. I was diagnosed in 2019 but for a long time my pain was dismissed and the numerous specialists did not seem to believe me. The rheumatologist finally took about 1/2 a year to diagnose me but I deteriorated so fast that I ended up needing a care giver and in a wheelchair.
The Humira worked wonders but I suffered damage that could not be undone but I am better than my worst condition.
I am military veteran but when I spoke of my symptoms, pre-diagnosis, the doctor basically called me a “wimp” with low pain tolerance. In reality, the pain was so severe that I wanted to the euthanized.
I’m so sorry you were not listening to, but I’m so glad that you now have some answers! Sending well wishes your way!
This is also my story. I quit Humira due to side effects and trying to stretch more often and I take iboprophen or naproxen when the pain is too bad. I know food makes things worse and I love eating steak and drink beer, and both does make things worse, so I only do it once or twice a week followed by the iboprophen (400 mg total). Some days are better than other for sure, very wierd to explain like you mentioned.
Thank you for your videos. I have AS too. Misdiagnosed for 2 years. On Cimzia right now for 6 weeks. Not working yet. So much pain . Swelling in my left hip and leg. Neck pain. Nerve pain in scalp. Nightmare. Fatigue . But staying hopeful 🙏🤞
I’m wishing you relief soon! Humira is working like a charm for me…it’s incredible to not be in pain all the time!! Fingers crossed the you start to feel a difference soon, I know how frustrating it is💕
You can control your AS Just by changing your diet.
I did it.
You can too.
Best of luck
Hey, everyone!
I just wanna tell you that you can live pain free without any medication.
Just by changing your diet.
@@sharadmishra3134 what diet?
@@sharadmishra3134
Pls share your diet as my 20 yr old son recently diagnosed AS but hla 27 negative
Thanks for sharing it does make me feel like I’m not alone. My symptoms started almost 10 years ago but nothing would ever show up in bloodwork or X-rays. I was only getting an x ray of my sacroiliac joints and it would show nothing even had an mri and nothing. I’ve been through a number of rheumatologist and know what it feels like to feel defeated and cry because it’s like nobody is listening to get to the bottom of your ailments. During Covid I traveled to a new rheumatologist and right off he suggested spondylitis being that I also had ulcerative colitis. When I looked AS up I was completely sold due to the effect it has on the rib cage. I was suffering so bad with rib cage pain front and back and figured this HAS to be it 🤷🏻♀️ still I was a tad skeptical because I still didn’t have a smoking gun with proof. I wasn’t on any prescribed meds because I didn’t want to be taking any medication that was unnecessary so I went some years just taking ibuprofen when needed. Fast forwards years after Covid I needed to find a new rheumatologist in my area because I was in so much pain and my back felt weird. I knew something was different this time. So I go to a new doc he does x ray of SI joints and nothing and on my second visit he x rays my middle back. This particular x ray showed straightening of my spine and also arthritis in my spine … for the first time since 2014 I’ve got the smoking gun 🤦🏻♀️ doctors were too focused on the SI joints and whole time the problems were above that 🤦🏻♀️ so currently I’m afraid of this flat back syndrome stuff this is my first time hearing of it and I had no idea this was a risk factor for having AS… I currently don’t know if this can be helped, fixed or what I’ve been waiting to hear from my doctor with next steps on what shall I do I’m really bummed out about all this I’m 36 I don’t wana be hunched over by 40😢
Hoping you get answers soon! Medication is definitely worth it to me even based on the risks!
I'm a 30 year old girl with AS, it's definitely a sore thing to have. I've been on loads of different drugs to alleviate the symptoms, I was on gabapentin before they knew what I really had, then I got put on heavy opiates which I'm tapering off of. I discovered I had AS after I worked on a dig site for 2 months, I was doing archaeological work and I was staying in a tent at night, my back got so bad I literally could hardly walk, then when I got back to my normal life it didn't go away. The doctor blamed EVERYTHING else on my pain... Sprains, chills and my period. I was mad at the suggestion it was my period seeing as I know my own body better than the doctor, I never ever suffered period pain, well my cramp is almost non existent yet this quack insisted it was that. Then I got accused of being a hypochondriac, I eventually saw another doctor who went me for blood work and scans and hey presto... Ankolosing Spondylitis. I must admit I wanted to go back to the original doctor and tear them a new one verbally due to the suffering I endured, I shudder to think how many poor people suffer because of her. I hope your symptoms are manageable 💖
I understand where your frustration is coming from! I definitely had quite a few doctors like that, unfortunately AS is quite uncommon and definitely not the first go to with back pain! Best of luck to you!
I’m being tested for AS and inflammatory spondylothrapy of the spine. Waiting on bloodwork to come back. I’m 38. Back problems started at 34. I wish you well and thanks for the video!
My blood work was normal, and I am still fighting the drs.
@@debrajohnson2466 I got the result back today for the HLA-B27 gene. It came back negative. I will see my rheumatologist for the second time, on 02-23-2023.
Glad to hear you are getting tested!
I cried when I heard your story. This is our American Medical Model and if it happens to a young beautiful patient who MDs should enjoy treating imagine what it's like for us oldsters, even though some of us are highly educated, dress well, and are good looking, thin old dolls.
I'm horrified for you but hope there will be new therapies, I hope you have considered Mayo or other speciality or research medical facilities. Then I would try a naturalistic, out in f pocket payment program to see what they had to offer, maybe food allergy etc related. I would be glad to do some medical research and make sure there isn't anything better for you to be taking out there.
I'll have to see if I can find more recent show.
Take care.
Aww thank you so much, it means a lot!
I feel you 🥹🥹
Was diagnosed with fibromyalgia after years of illness and trying to find answers. No luck. That was all 10 years ago and many of my symptoms did and do align with AS. I do not remember them doing an MRI of my back or anything. I’ve had back and plantar fasciitis pain my entire life. But at this point, I’m certain it would just end to as another thing crossed off the list. I am so disappointed every time I try to find a diagnosis that actually means something. Even if I got a “worse” diagnosis I’d prefer to know why I am living like this, and actually get medical care. The way fibro and CFS patients are treated is abhorrent. It’s easier to get medical care by shooting your self in the foot than to show up with a “mysterious” invisible illness. I doubt it’s all that mysterious though, I think AS and other diseases have just as many if not more women affected, but that women and also men in some cases get dismissed and kicked out of the doctors office asap. Our medical system is useless. When you said you had to demand care, I felt that. I had nurses notice a cut scar on my arm once and get all friendly, but I’ve never once had anyone take my fibromyalgia diagnosis or invisible pain so seriously. Well, I used to self harm because it helped with the fibro pain if that tells you how bad it is. I really can’t take doctors seriously anymore. I’m not going back. I just can’t.
Thank you for sharing! I am HLA B27 positive and my Dr.’s were surprised since I’m black and you see it mostly with someone who is white…who knew. I’ve seen mult Dr’s and am waiting on another to squeeze me in. Hoping for answers!
Good luck to you and getting answers!! Very interesting because it’s also uncommon in woman! Wishing you the best!
@@dance.jillian963 Thank you! I was diagnosed with AS today and am now waiting on additional tests to ensure I can take Cosentyx.
This sounds like my exact story! Because I had an old fracture I went almost 10 years of doctors blaming it on that and not looking for any further autoimmune causes. Right now they are still debating between AS and Lyme.. waiting on more tests as I guess Lyme and AS can look almost identical on MRIs...
That’s very interesting! I hope you get answers and treatment soon! Best of luck on your journey!
When you pass out is called Vasavagal Syncope so you have to be laying down when you get your blood drawn
I’m a 38 yo female. I have significant damage to my SI joints, sacroilitis and spondyloarthritis. I’m not real sure how it’s different from AS but I think it’s that I don’t have spine fusion as of yet. My pain is out of this world sometimes. I take enbrel, methotrexate, sulfasalazine, hydroxychloroquine, I take an opioid for pain as well as napraxon, and I’ve had so many steroid injections, in my shoulders, feet, spine, sacroiliac joints, hips… it’s overwhelming just to say all that. I have uveitis. Chronic yeast infections. Mouth ulcers, nasal ulcers, hair loss, sinus tachycardia, ALL OF THE TIME, rectal bleeding, reflux and idk what else. I lost my job and I can’t find another. Yet. I haven’t given up.
❤❤❤
YOU ARE NOT ALONE❤
Keep pushing we will make it through🤍
I finally got diagnosed with non-radiographic axial spondyloarthritis, fibromyalgia and Sjogrens - mine isn't showing up on xrays but the back pain was bad and has been bad since 2014 when I got Rocky Mountain spotted fever. It's taking me this long to finally get the Axial spondyloarthritis diagnosis last week. I was professionally dancing since 2003, middle eastern dance then since 2014 dancing with fire and I had to stop that. I dance now but barely and rarely perform maybe twice a year if that. It's alot of pain in the am waking up and at night when I goto bed and also after dancing or walking for more than 15min... at first the rhuematologist tried to blame it on dancing saying I injured my hips or back. I told them no, I've always been very careful and I know what an injury feels like. I kept on going to different docs, trying different treatments, they said it was toxic mold exposure, Lyme disease etc and my pain just kept getting worse. I finally said I don't think this pain is from the fibro and it's really bad, I had gotten better from 2 herniated discs in 2021 and had 5 steroid shots but since last summer the pain has been getting worse and worse to wear I can't do house chores and I barely sleep and have excruciating pain in the am. I just got put on meloxicam this week and it seems to be helping but my hand pain has flared up today. Good luck, thanks for telling your story and I'm glad you are feeling better.
I’m sorry to hear that, I hope they get that under control for you!
@@dance.jillian963 thank you. Thanks for sharing your experiences. This disease is so painful and its sad that it takes so long to get a proper diagnosis.
I went dancing around Christmas… woke up in sooo much SI pain that lasted a week. Went dancing again New Years and I was fine. Go figure … with my AS I never know what to do or avoid because it changes so I think enjoying life and not limiting myself is what I do now.
I agree with you! I just do everything and anything unless my body tells me otherwise!
I’ve had a very up and down journey with AS myself , working out and stretching were the only things that really completely helped keep my body well but eventually a bad flare would stop that routine, every time … something that has helped me out SOOO MUCH was taking a Chromium Picante supplement. I took Chromium initially to help this Ulcerative Colitis that seemed impossible to control no mattter what I did, I was on Keto , working out , eating perfectly in every way but I couldn’t shake UC and I couldn’t figure out how to lose and weight, I kept gaining weight each week, my posture was worsening my RA spread and got worse, everything seemed to be kill any confidence and hope. The first time taking chromium picolinate I started nodding off at work all day even while standing , I went home and just fell asleep trying to make dinner. The next day I had to pee ALOT pretty much every half hour which lasted for about 36 hours, and everything came out of with a bowel movement at almost midnight (I’ll just leave it at that). But yea idk what to say except it’s helped me in every single way imaginable, my feet’s arches were strong and back , my left him popped and was even finally and eventually my middle back released , it was absolutely a miracle for me. At that time I didn’t even know all this was because of the chromium I had been taken for about a week straight , and I only was taking 1 - 200 mcg pill each day and probably missed a couple of the days. Anyways after that week i was feeling so well , hell even my sense of taste and smell came back a 1000 percent which is crazy. After feeling so well I wasn’t taking any supplements anymore , any chromium supplement to be more specific and slowly things went back to the way it was. A few months later I remembered the chromium I had taken and tried just 1 again in the evening , immediately I had to pee a ton , my mind and body were working again and all my joints loosened again. Almost a year later I’ve been taking one of those pills every other day I’ve not had any flare up since , my weight went from 245 to 210 which is my usual weight (I’m a pretty big guy so this is a pretty good weight for me) and my life is back in every way :). No acid reflux , no dry mouth and eyes , my skins cleared up I’m not puffy and bloated , I wasn’t even dieting during any of this either I actually ate a lot more as I had very little appetite before this. So this is where I’m at now as I am typing this comment. I started taking chromium in first place because I read it was good for auto immune issues and I was trying everything to heal myself. I never comment on you tube or anything for that matter but I feel as if I this could really help a lot of people and I wanted to share. I found it at the Vitamin Shoppe store and it’s just a $15 bottle of chromium…. All of my lab work is improved , enzymes are back normal , breathing is better , waking up is better ect. I doubt There’s anything online to back up what I’m saying here but there’s gotta be some connection to the gene mutation. I hope my experience helps someone and please tell me how it worked for you :). The first few days you’ll be tired and maybe cranky but you’ll feel your body being able to relax mentally and physically, i believe the fatigue i experienced on first few days was inflammation being filtered out , but it’s a good thing, then hopefully you’ll be like me and see everything’s back to how I used to feel, maybe better even. I’m 36 years old …. I hope this helps :)
I suspect I have it too. I just had x rays yesterday & a bone density test is next week. My doc thinks I have stenosis or a hip fracture but I'm having so much groin pain & difficulty walking. I forgot to tell him of some other apparently important determining factors such as a re-occuring very red eye , a swollen finger knuckle & ongoing plantar fasciitis. I'm thinking that all points to A.S.
Hopefully you will get answers soon!
Did your bloodwork and/or imaging show anything?
I feel like AS would be the right diagnosis for me, but so far, no bloodwork shows it. As of now, I’m being treated for spinal stenosis.
Keep moving and stay as flexible as possible. I have lost rounghly 89% of the lordotic curve of my lumbar spine from this.
That’s definitely the goal!! Wishing you the best on your journey!
@@dance.jillian963 Thank you Ma'am. The same to you there!
looking at how you dance, I think that you feel great))) I'm happy for you. Do you inject humira all the time or was it a short time?
Thanks so much! I do feel about better, some days are better than others! I inject humira every other week!
Mine started by feeling like i was kick in the crack of my butt (literally, im not being cute) then i couldnt do stuff like clean the tub from a standing position. Sleeping on a palet made ribs feel crushed and it all happened very fast.....fast forward 20+ yrs later I am just now getting a doc to listen. Even after an mri the ortho told me it made no sense that i have as much pain as i do nor the additional symptom of "cauda equina" like saddle display. Even seeing the L4 and L5 having displaced pressing on the "cords" . He only told me "there is a little bit of compression but it shouldnt be causing this" he said nothing about the L1-3 nor my facets. He also never mentioned the loss of lordosis and scoliosis in my lumbar. Nor did he even look at my neck which has had no curvature since i was a kid......his coworker who sent me to him....also couldnt see the displacement in my hips while sitting next to the computer.....but i could from across the room w/o my glasses.
Im so happy they diagnosed you young. Ill be 42 in 2 wks and my ribs already hurt w every flare up there are nights i wake up crying from knee and/or hip pain....they literally just tell well we dont give paun meds for back pain. They give me a muscle relaxer....i also need to be tested for EDS (a common comorbity of A.S.) muscle relaxers are good for already stretchy stuff. I personally dont believe we should have to pay doctors unless they give a CORRECT diagnoses and ethical treatment. I have so many stories of really bad medical experiences, like a nurse jamming a catherter in me and then ripping it out because she got mad that i was scared, she said to me well you werent scared when he (my boyfriend) was down here. I had to wear a pad for 2 months or literally pee in my pants. But they dismiss ppl too often because they jusf want the easy stuff
I hope they give the dignity and respect you deserve
Sorry to hear about all that you’ve gone through! It’s tough to find a good doctor, but when you do find one it’s so relieving! I’m very happy that I got diagnosed when I did!
I was just diagnosed with late stage AS at 28 I’m a male but I’m disabled as of now. My lower spine and pelvis area are fused unfortunately so that’ll never change. But thankfully I don’t have bamboo spine but if left untreated I will. I start on humira soon every 14 days. Hoping it helps with pain and mobility cause I can’t walk without a major limp and I need a hip replacement as well so I’m all jacked up but if I can prevent it from getting worse then that’s what I want cause I don’t want bamboo spine. Unfortunately it’s genetic so my kids will have the condition. I was always active when I was younger skateboarding, swimming I was outside everyday with friends. My signs started at 15 with arthritis in both of my eyes. Thought I’d go blind but steroids cured it, then one day when I got older I just couldn’t walk or barely move couldn’t bend over and couldn’t lift my head up straight. It’s been a long painful Journey but thank god I’m being put on medication and starting physical therapy.
I’m glad you finally got answers! Humira has really helped me in my level of pain, I hope it works for you as well! I got diagnosed pretty early, so I have high hopes that the medication will slow its progress!
I found Humira elleviatiated 90% of my stiffness. My brother has returned too Humira after a couple of years off it. He is over 60, very frozen neck and all the rest of the stiffness. It is genetic but not all children will have the gene and even if they do, it takes a trigger to set the gene into action on the immune system.
I’m in the same situation as you but a bit older. Let me know how u are doing.
Wishing you blessings for medication relief. Humira helps very much, I also take pain meds for the chronic pain from AS. In my 20's/30's/40's I had flare ups that would just appear then disappear, some times I couldn't stand up or get up the stairs for days. My brothers have more severe AS associated pain and spine stiffness/fusions.
I found that when my pain comes I can get it to go away faster if I fast for a day and then just eat plain meat with only salt for a week. I have noticed that I get the pain when I eat too many things full of chemicals such as candy at Halloween. So I try to eat a very clean diet of plain meat, veggies, fruit
It's HLA B27 Gene either positive or seronegative.
Humira was a miracle for me...I went 15 years until biologics came out... It was unbelievable pain..
100% amazing!
How long you took humira
@@tiktubez about 7 or 8 years.. it's awesome
Humira didn’t help me. Enbrel is helping more, but I’m waiting to be approved for an infusion.
@@HeraclitusThoughtBubbles I did take enbrel for a short time, my Dr wanted me to go on to a different type of biologic called Cosentyx... I took it for a little more than a year but it was giving me psoriasis so he suggested Cimzia in 2 months I had something like eczema and psoriasis but worse ..my skin was falling off my hands I ost big chunks of hair.... So it turns out that 1bin 1000 people will have it...I was the lucky one. I went back to Humira and went to USF college for treatment... It's supposed to get better after 3 years ... My hair grew back mostly. Once you get one that works stay on it...the grass is not always greener on the other side..
I am also a AS warrior among other things. Just came across your video and wondering if you have made anymore about AS?
im sorry. im 59. im a textbook case. syntoms started around 15 yrs old. people noticed i was walking different when i was 26. noticed my vertabraes were fused together by 32. finally diagnosed at 39. not a good story. hope your early diagnose helps you stay better than i ever did. my case my doctor says is weird because i never have had any pain
I am always interested in hearing about others AS journey! I am glad to hear this didn’t cause you pain!
@@dance.jillian963 unfortunately since is a congenital disease, 2 of my sisters one 47 the other 43 suffers the disease as well, however, they get pain flares. also we inherited the disease from my dad, the male is the carrier of the gene, so i decided not to have children
I am suffering from AS past 5 years. First few years it was not diagnosed. Pain was on off.. Last 1 year I am suffering execessive pain in my lower back and now spread out to upper spine.Taking medicines and do some exercise following doctor's prescription. I am 38 now. Is curable?
Just Humira. Lucky you! I had Hulio, Enbrel, Infliximab+Nordimet (MXT), Cosentyx, Rinvoq and today I had my 2 first shots of Taltz. Nothing worked so fare... 🥴😤 Let's hope this one works out for me - Doctors don't know what to try next..
Dang! That suck to hear, I’m so sorry. I hope they figure out a solution that works for you! Please keep us posted.
Hi @stevemillim ! So sorry to hear you e been resistant to those medications:( just curious where your pain first originated? I’ve heard that people that started having symptoms in their shoulders originally found it hard to find treatment that helps.
Hi. I'm still on Taltz.. Light pain started in lower back. The real pain came +-6 months later in my right fingers. Couldn't move them in the morning... But with Taltz I'm almost pain-free for 2-3 weeks. The last week is OK but not fine... (have to take it every 4 weeks)
@@stevemillim I just started TALTZ. When did you start to feel the medicine work? I am about six days in after my first dose.
@@jacklynnroskey1981 after 3 Days. But only lasts for 3 Weeks now.... So the last week pain is coming back. Fingers stiff again in the morning for a few minutes
I also have AS and it took forever to get a diagnosis
I am glad you not have a diagnosis!
For the past several years I’ve been getting mild iritis in my left eye 6 months ago it was so bad I went blind for 2 months finally got blood work done and was diagnosed with hla b 27. It’s weird I have no joint issues no muscle issues inflammation nothing it just goes after my eye and I don’t even get much back pain and I train a lot. I’m so new to this and have a lot to learn I guess I’m lucky without ever any pain. I’m going to go back to my primary and figure out treatment so I don’t get this crazy iritis in my eye GL
That is so interesting…I have not had any eye issues related to my AS (and am very thankful). It’s crazy to see how it affects everyone so differently. Wishing you the best!
not being diagnose it's hard to link things but i've been having my right eye all red, itchy, teary and hurting everyday but mostly at night! Sometimes it's hard to keep it open x.x but again, i don't know if its related yet :/ hope you get better with time!
@@lilianacadete3921 thnx that’s usually how iritis starts minus the itchy just keep an eye on it. If the vision starts to get foggy then see the eye doctor
My partner has the iritis and it is scary he was told it is AS and told to take steroid drops. How is your eye these days.
@@samantha9313 since that real bad episode months ago where I lost my Vision im good. I’m pretty sure I get it when I have any type of actual milk not milk products. I haven’t had milk or cereal in several years but before the episode I had 3 protein shakes from a juice place and they had a little bit of almond milk in them a few weeks later iritis took my vision and the usual months of pred so as long as I stay away from milk I think I’m ok
Im 70 years old. I was diagnosed with AS at age 40 after my brothers were diagnosed. AS effects everyone differently. I'm in a flare up at the moment. In my last UA-cam podcast I talked about Anklyosing Spondylitis and how flare ups effects me. My podcast is Barbara Radzevicius Bondi Crafter
ua-cam.com/video/xhxJJL5sO1Y/v-deo.html here is the UA-cam link to my podcast on AS
Wow! I will take a listen, thanks for sharing!
Hi Barbara - Do you take medications?
I have psoriasis and I am positive for the HLA B27 gene. My symptoms are getting worse from being on Otezla for my psoriasis. I feel like I am getting more AS symptoms the longer I am on this medication. My rheumatologist is ignoring that fact and is telling me that I don't have AS or PsA. I am going to go see another rheumatologist in June and I hope she will be more kind. I wish I could do Humira, but I am allergic to latex. I hope all is well with you. 🙂
Sorry to hear that! I hope you get more answers when you see your new rheumatologist in June! I did not know Humira had a warning for allergies to latex… That’s super interesting to me. That’s also very unfortunate :(
@dance.jillian ❤️ thank you! I hope you are doing okay, because I know that AS is not fun. You are such a nice woman.😊 God bless you!✝️💜
There is a regular Humira injection now for those allergic to latex (non-pen). See your primary or rheumatologist and ask.
40 years of Ankylosing spondylitis, and trust me, I've tried everything, but the Carnivore diet is the only thing that works. Good luck.
Wishing you all the best!
Can you post an updated testimony on your AS?!
Yes! I can try and film an update shortly!
Any updates on AS please
Its really good and indeed im suffering from AS but i couldn't cure it if u can plz explain which injection u used. Plz don't ignore. Thanks for ur cooperation
Humira!
@Emily Luna were to find doctor obela if u can plz guide
that was a great video but I wanna ask u what is the treatment that u taking to be better bc I have the same disease but i'm taking very expensive treatment and it's progress is so bad and slow
Hi! I’m taking humira and it is working wonders for me! It is a very expensive drug but there is a medical plan that brings patients costs way down! I definitely recommend taking to your doctors or health care providers about affordable options because there are definitely some out there.
@@dance.jillian963 I was taking humira before and anibril and cosentyx and I'm taking cimzia now but all these drugs r expensive and my dad afford them so I'm sad for this only and I was asking If there is health insurance for foreigners like me and I'm student in faculty of medicine in my country (EG) there is any opportunity to come ur country and get health care !!?
@@mostafaelshahat1525 unfortunately I am unsure of that. I’m sure answers could be found by calling the individual drug companies for payment options. Best of luck to you!
Thanks too much 💖
❤️❤️
❤️
Plz tell how u get cure with AS plz tell
I feel like most doctors are dismissive of women’s pain :)
Same, 10 years and I got stuck with “fibromyalgia” and they don’t do anything for it or you. But I have had every symptom mentioned in this video and others not mentioned. I don’t know if I have it. But I do think that it’s not a “mens disease” from what I’ve seen the woman with AS are dismissed, ignored, and treated like garbage. For years if not a decade like me. I assume women with AS don’t get diagnosed most of the time unless it gets really bad, and even then maybe not because so many women with CFS and fibro become so sick they can’t walk anymore. That’s American medical care for you. And misogyny.
Hi it's too good to hear all your AS story can you name your injection again?
I am a As effecte too it's very hard to justify such a chronic disease at such a young age .
I had spine pain leg pain thn it went to my knee and neck too couldn't walk couldn't go to bathroom too.
after 9 to 10 doc I finally got my AS diagnosis and I am got (SECUKINUMAB) shots i am feeling much much better so AS ppl do discuss this shot with your doc
and I suggest to do swimming it will help you alot
may Allah bless you all.
Glad to hear you are feeling better! I’m on humira!
@@dance.jillian963 was watching your dancing vidoes you're way more fitter than healthy ppl more power to you
do you take shots regularly? after how much period?
@@ahmedshahid5530 thank you! Yes I am very active. I do injections every other week!
@@dance.jillian963 how long you have to take humira i mean the full course of this medicine?
@@amritkhehra2705 hi! I’m still on it, I’ve been taking out for the past year and a half.
How have the reactions been lately? I am starting humira soon.
Hi! Yes, my skin around the injection site still gets red, itchy, and swollen. It usually covers about a third of my stomach for 2-3 days after. I have realized that if I do it in the upper stomach the reactions isn’t as bad as if I do the injection in my lower stomach?? I don’t know why this is the case…also icing the area right after seems to help! My doctor said that the reaction is okay as long as I can handle it, and in my opinion I would take this anyday over the pain when I’m not on humera! Hope this helps, good luck!!!
How long did it take from your first appointment until diagnosis. My parents have been telling my doctors about my pain since I was 5 years old, until I could advocate for myself. But I was always told "she will grow out of it" " its growing pains" " she's too young" "but she's a girl... she won't have it" and I feel like I'm losing my mine. My dad has AS and I've had symptoms for 14 years, I'm in physio, the doctors are taking it somewhat seriously, I have MRIs every 6 months and I'm on medication which doesn't work. I just want it to end at this point
I had pain starting in high school but I was just told it was SI joint sprains. It wasn’t until college that I knew that the pain was too bad to just be a muscle/ligament issue. I when to doctors for 1-2 years with no diagnosis and just prescription for pain medications and PT. It wasn’t until I said I wasn’t leaving until I got a referral that I truly got answers. I was referred to an orthopedic surgeon who told my my symptoms seemed rheumatological and then he referred me to a rheumatologist. The rheumatologist was pretty certain I had AS based upon my symptoms, I had blood tests the same day and an MRI with contrast later that week. I got a call the morning after my MRI confirming the diagnosis and when it for an appointment and first humira injection that same day. It’s was soooo hard to find a doctor that listened but things went very quickly once I found one that did! Best of luck to you, I understand your pain💕
I get relief of my pain when I fast for a day and then just eat plain meat with only salt for a week. I think AS is caused by the many chemicals in our food now. The way I figured out the connection between chemicals like aspartame and my pain was from eating a bunch of candy at Halloween
I've got this. just about to start TNF TREATMENT. I'll let you know if it helps
Good luck!!! Keep us updated!
@@dance.jillian963 Thank you 😊
I have also anklosing sypondities
Sorry to hear that!
Non-radiographic A.S.: females are misdiagnosed most of the time. They do not know the true number of women who have this because we usually dont show on imaging, like men do, until later stages of the disease. Also if you already have an autoimmune disease you are more likely to develop AS
It is super said how women are dismissed....for years as being dramatic or hypochondriacs
I totally agree! Looking at the statistics is kind of crazy!
Totally agreed. I was recently diagnosed in another country. I saw 3 rheumatologists in Canada where I live. They couldn’t diagnose me. My blood tests are normal and that’s probably why but in women the tests can be normal, you can be seronegative with normal CRP. I am now trying to see other rheumatologists to get treatment here where I have insurance because it’s ridiculously expensive out of pocket.
I e had it, undiagnosed, since I was 15, I'm 52 now. When I was 27 I got diagnosed with fibromyalgia but 2 months ago my rhuematologist and orthopedic diagnosed me with A.S. and said fibromyalgia was a misdiagnosis
Yes it sounds like misdiagnosis is best common with this! Definitely heard some misdiagnosis of my own, glad it’s figured out now
anyone on xeljanz for it instead of humira?
But what showed on your MRI's? And did you get a full spine MRI?
Yes I did. I got an MRI of my spine and pelvis. It showed development of bone spurs on my spine, as well as edema and swelling in my bone marrow
I'm waiting for my blood test results... I'll either get them today or tomorrow.. I'm 40.. been having back trouble for years.. but I have a inflammation marker of 53.3 when it's meant to be 8... so in worried.. I've been in pain for 4 months every day... i don't know how to stop it or help. nothing helps. ugh.. I'm scared and have no idea what to expect. does Medication help with pain??
Yes!! The humira has worked miracles for me! My pain is 95% better! Hope your appointment went well!
@@dance.jillian963 I have great news. I don't have the HLA-B27 gene. Thank you God! But I have x-rays today to figure out if it's AS without the gene. I'm hoping not. I'll keep you in the loop. Hugs.
Yay! Fingers crossed for you!
Hellow sister! have you noticed height loss for this disease?
HUMIRA scared me because side effects could be MS as well a cancer which is much worse then AS so I never took it who wants to go from one bad condition to a worse condition
Honestly I was and still am willing to risk side affects from the medication because the pain from AS reduced my quality of living. Why fear the future when you can’t live in the present?
@@dance.jillian963 my doctor switched me to consentyx much safer and risk of cancer is rare you should look into it. You don't want to go from AS to something worse but I have bad anxiety I just started taking it so far only side effect was loose stool for a day.
Hello, do you ever get heaviness are weakness in the limbs
I wouldn’t say heaviness, sometimes aching and numbness
Hey. I'm a student of final year . I've been misdiagnosed since 4 months. I made a diagnosis myself. Then I told rheumatologist that I think I've AS. He made diagnosis of AS but still I'm on NSaids. NSaids have worsened my Gastritis. Dr didn't prescribe me biologicals I don't know why. Now I feel severe pain my neck and shoulders that I can't sit. My Blood tests and MRI is normal but Dr said we can still have AS. I don't know what to do next 🥺. Does it affects fertility and menstrual cycle
so make the analysis "Molecular and genetic research of HLA-B27". If the result is positive (like mine), then it is most likely AS
This is my story and I'm still going through it 😢 My self worth is rock bottom and they keep prescribing me antidepressants.
Try to find a ketamine clinic it has helped my mental health dramatically.
which type of mri did you have that gave you your diagnosis?
I had an MRI with injected contrast
@@dance.jillian963 and it was of your spine? I was just recently diagnosed with lupus but I feel like there's more going on... the area where u said you were getting alot of pain thats my worse pain area its so bad I can't walk for to long and when im laying down and move or go to get up it makes a loud cracking noise
Very interesting! Yes it was of my spine and pelvis! Currently on humira and I feel much better!
@@crystalr9633 my sympathies. It's unfortunately very common to have overlapping inflammatory conditions/diseases. I was diagnosed with fibromyalgia, definitely not AS per the Rheumatologist, then enthesitis about the same time by another doctor. A year or so later the NP at the Rheumatologist office asked if anyone had done an MRI of my SI joints. They hadn't, she did and bingo, AS. On days I hurt, ache or just feel exhausted it can be "fun" trying to decide what the cause is and adjusting as needed to minimize symptoms. Best of luck.
U r super beautiful jillian i have a neck pain for almost 1 year i have taken ax ray ang the dr tell me that my neck is normal but i have experiencing a neck i use hor n cold compress but still the pain afterwards after using that in the hour im using sometimes pain reliver like celecoxib 200mgs due to the doctor suggested to me.hope u answer this.tnx.
Still the same even im using hot n cold compress the pain still there after an hour.8m letlet del rosario my thru name is renato im from philippines.mabuhay.hello jillian.
Hi,what med before the injection was you put on
I don’t put anything on beforehand! I just wiped with rubbing alcohol to clean the skin before injection
@@dance.jillian963 Hi sorry I ment was you on any other medication before the injection tablet form
@@bazslade6456 meloxicam !
How long do you take biologics?
I’ve been taking them for a year and a half now!
Yeah. I’m 34 and lost a lot bc of this sh*t. 🙄
Was your diagnosed after the covid pandemic started?
Did you happen to get the covid vaccine?
I heard than alot of people who got the vaccine are getting autoimmune disease
Currently in the process of being diagnosed
Never had problems all my life
But ever since i was forced to take the covid vaccine
Back in February 2023
I suffer from so many different symptoms
do anyone get muscle weakness Like legs arms fingers?
Buna ,da eu am slăbiciuni musculare an mâini furnicare și picioare mai mult an spatele genunchilor și oboseala mare am hla b27 pozitiv la mine este grav cu respirație restricționată fibroza an plămâni și coaste lipite din Romania
@@dc.pentrumesteri4893 can you please translate. Thanks
I have to do tests for this also Hlab27
Good luck!
Hello sweetie... What kind of injections are you on now? Cosyntex or something else?
Hi! I still take humira on a biweekly basis!
Can we be friends.??
At the 9 minute mark you were gonna describe your symptoms and I feel like you were so vague.. :(
You doing lots of harm to people who are suffering of AS. Instead of sitting and yucking, demonstrate how are you WALKING.
I can walk normal, I can do every day activities normal, I don’t understand how this video is doing harm but to each their own 🤷♀️
@@dance.jillian963 With all respect, if you can walk normal, if you can do everyday activities normal, that indicates you do not have AS. People with AS are in excruciating pain, disabling them from walking and prohibiting doing everyday activities. That's why they must take drastic and harming other vital organs (kidneys, liver) medications, just to get by. In your video you appear to be a young beautiful lady, talking for 20 minutes about morbidity you have no clue of. That's why your video is doing disservice to real sufferers of AS. Are you by any chance collecting AS disability benefits? That would be a motivation for claiming AS. Get up in your video and show me how you WALK. Then we TALK.
Thank you for sharing lovely! 🤍
This gives me hope. I’m trying to stay patient and remember God will let me get diagnosed when he’s ready! I had a positive ANA test 1:640. Negative for AS, RA, MS, Diabetes, Thyroid issues, etc etc. I started having pain at 8 years old, in my knees I would wake up in pain and couldn’t straighten my legs, my parents thought it was growing pain. Younger then the age of 8, I got chest pains and had trouble breathing. My parents sat me on the counter and noticed this pointy bone sticking out in my chest. They took me to the doctor and all they established was the bone in my chest is longer then most people. Nothing else came about the visit. This pain still continues today and I’m 25. In elementary school I would come home and sleep for hours after because the day was so exhausting. Getting up in the mornings is so exhausting to this day far worse then my childhood and when I do things around the house bending over etc, my shoulder blades and back are so inflamed and hot and it’s throbbing pain that feels unbearable! My legs are now far weaker then they were before and I have muscle convulsions when I straighten my knees. It’s also very swollen and tender behind my knees! I’m scared! Doctors don’t have answers since I started looking 6 months ago. Trying to stay strong! Everyday is SO hard.
I am so sorry to hear! Getting answers definitely changes a lot! I hope you get some soon!❤️❤️