Hello everyone, I have been having excruciating back pain every night for about a year now. The back pain felt like my back was breaking in the middle of my lower back and I would feel incredibly stiff. This pain has awakened me in the middle of the night and I toss and turn to try to get comfortable. Lately, the pain has moved up my spine to right between where my ribs start, and the ribs hurt a bit as well. I am in such pain when trying to get out of bed, but once I get moving or take a hot shower the pain goes away completely. I recently got diagnosed with Lichen Sclerosus via biopsy (a chronic inflammatory skin condition that is thought to be autoimmune, and linked with many other autoimmune conditions). I have also been having strange systemic things happen since about August- one of my eyes twitching for four months, extreme fatigue, hair loss, iron deficient anemia, blood/mucus in my stool with abdominal pain, and most recently a very resistant UTI in which I saw blood in my urine frequently. All this has happened back to back. I am also starting to notice that some of the other joints in my body are getting stiffer/more painful (i.e. my knuckles are really stiff, and my knees are starting to hurt a lot). I should also mention that I am 30 years old and almost 14 months postpartum. Does any of this sound like it could possibly be AS or something else? I am hoping to get in with a Rheumatologist soon so I can finally get answers. I have been having so many appointments lately and just want to get to the bottom of things so I can feel like myself again and get some energy back. Sorry for this extremely long post! Any insight or advice is greatly appreciated!

My juvenile rheumatologist (who is awesome) once told me that my chronic sinus infections (that made me want to kms) were unrelated to biologics/A.S. This group made me realize it is common among A.S patients. I feel like the information we share with each other is more valuable sometimes! you are all savages. fuck this beautiful life.

I know only a doctor can diagnose me but reading thru this sub and i feel like I have AS? I see a rheumatologist who prescribes me humira for my UC and sacroiliitis which she just has called arthritis. I am HLAB27 positive. Hip pain is pretty well controlled with my humira but I’m starting to have some new lower back pain which brought me to this sub. Do I meet criteria for AS? And if so can someone give me positive stories I’ve had a really hard few years medically and I feel so sad thinking about living the rest of my life with these issues 😢

Hi, when im having a painful flare up and am overwhelmed, I tend to turn to food like ice cream and chips and other "bad" treats to feel better and distract my mind. It doesn't help my joints obviously and I am trying to get out of the overweight bmi.

Has anyone else struggled with this and do you have some advice?

I was diagnosed earlier this year and I’m trying to get pregnant. We’ve been trying since late summer and nothing so far. My CRP level is still elevated. Could this be the reason or am I just overthinking this?

I’m currently on the diagnosis struggle bus (NHS waiting times 🤷‍♀️).

Amongst my heap of symptoms and ‘normal’ bloods I seem to have a walking limit. That limit changes based on the weather, if it’s warm I can walk longer than if it’s cold.

My si/hips/upper thighs get tired, achey and tight the more I walk which then slows me down.

If I push through it I end up in a ‘flair’ for a few days.

Is this a symptom anyone here recognises?

Rheumy was trying to fob me off with a fibro diagnosis almost as soon as I walked through the door - menopausal white woman of a certain age = fibro in their eyes. I want to make sure I know enough to be able to push for an accurate diagnosis.

NB- fibro is real, I just don’t think it fits my symptoms well and it’s an easy ‘win’ for a doc under pressure.

Basically the title. Just wondering if Biologics would work or decrease pain if I don't actually have AS or another autoimmune disorder?

The diagnosis was kind of “it might be AS so lets try biologics and see what happens.”

Humira decreased my pain significantly. I've had an issue with Insurance and haven't had it for over a month now and feel like absolute shit. Just wondering if that leans it more toward probably being AS?

I’ve had Ankylosing for 25 years…. I am currently dealing with a HORRIBLE respiratory infection, cough, sore throat, constant phlegm and fevers that have now lasted 4 days…question is…. My Neck and Low Back are REALLY hurting!! I assume from lack of movement, exercise and the fever and cough… Anyone else deal with this??

I got diagnosed with AS back in 2021 ish. I identified with it and researched it a bunch for about a year or so.

I was experiencing HORRIFIC mid back spinal pain on the right side. It was just so hard to get through the day. I couldn't assist with load ins for theatre, and I just felt useless. PT didn't help either.

After some time, the pain became much more manageable. The type of pain I was experiencing went away, so I wondered if it was the right diagnosis. Recently, though, it has become less so. I've done some things to try to help and it's only made it worse. I finally decided to schedule a follow up appointment after these 3 ish years (which I bit the bullet on because I was deferred from donating plasma if my diagnosis still stands, go figure.) EDIT: I now mostly experience low back/hip pain (usually exacerbated by marching band) as well as leg pain when I lie down

I am just... Scared. I guess. It's like all that fear from before the diagnosis is coming back. I thought I had shingles or something akin to that and it was just so scary for a while. Recently I've just realized that I have been diagnosed with a life changing disease and have just ignored it for several years.

I'm also on medication that has been linked to osteoporosis and bone density issues (though it's usually after 2 ish years, which I'm coming up on or recently surpassed) and I'm afraid I've screwed myself over. (I know there's a rule about discussing this, but if anyone is wondering, I fully intend on switching to a different form of medication soon.)

Anyway... If anyone has a small tidbit of advice, my appointment is in 2 days and I could use it.

Would anyone be able to recommend a rollater walker, with a seat, that is sturdy but a good price. I'm sick of not being able to walk around a store. I don't always want to have to use a scooter because i can't stand long enough.

Lately I am having more trouble with hip and knee pain. It is difficult to get up out of a chair if I sit for an established amount of time, for example. I have been dealing with AS for 38 years, and this level of pain is new. I see my rheumatologist at the end of December and will ask her about this. I am kind of worried about my mobility. This type of development makes me wonder if I need more aggressive therapy like Humira or something like that. I am only on Meloxicam. A PA told me I need to be on a biologic, but I haven't been offered that by any arthritis doctor. I am going overseas in February and although I am determined to go, I know I will have to be attentive to my movements. Anybody have anything to contribute? I would be grateful for any ideas or experiences. Thanks.

Hi everyone!

I (26F) was diagnosed with nr-axSpA at the end of October after having symptoms for years. . . It’s been a long journey to get here, and now that I have a diagnosis, it feels like I’m starting all over as I learn about it. I also have hidradenitis suppurativa and PCOS, too, in the larger disease cluster.

My derm/rheum are working to get me started on Cosentyx or Humira soon, but in the meantime, I’m trying to learn more about how to support myself during symptoms, flare-ups, etc. (Especially now that I actually know they’re flare-ups.) I’m also soon to start some PT on problem areas.

One thing I’m struggling with most is hand soreness. I use my hands a lot—I work in a job where I constantly type, write, etc., but I also do a lot of hand sewing on the side. You’d think that those activities are what make it worse, but the most problematic pain occurs after waking up in the mornings. Still, I’ve also realized that I tend to curl my hands up really tightly against myself while I sleep. I think the combination of tightly curling up my hands, my hands getting cold, and the decreased mobility during sleep make it a whole conundrum.

Do any of y’all have the same issue? And if so, have you found any solutions? I’ve been looking at compression gloves but I’m not sure if those would be any real help. I’ve even considered buying hand braces so that I can’t bend my wrists so tightly during the night, but I just don’t know if that will be a good idea in the long run.

Any pointers or suggestions would be greatly appreciated. Thank you!

I want to do them as much as possible to keep them mobile and from fusing or loosing ROM.

recently I have starting getting a pain in the middle of my heel when I stand or walk on it. It’s not too bad if I rest it but after working all day it will be worse. Maybe two weeks ago it went away but today I’m starting to feel it again. Has anyone else experienced this?

Hello,

I am curious to see, if you are willing, if any of you have the same co-occurring conditions as me. I suspect my neurodivergence is a big reason I wasn’t accurately diagnosed until this week at age 43, as it creates major differences in how I communicate. Trying to make sure I’m heard by medical professionals is incredibly challenging.

I have ADHD and AS, with autism and Ehlers-Danlos highly suspected by me and my practitioners.

There’s some evidence that there’s a link between neurodivergence and autoimmune. I’m just curious to hear your thoughts.

I’m just curious to know what y’all do for fun (physical activities like go carts, wall climbing, archery etc? I’m curious because I don’t know what I can do that won’t cause a flare up or an issue. I’m more worried if my lower half of the body then my upper half. I suggested skating and my PT thought it was a good idea but named a few cons like falling or twisting my ankle that could cause problems. So what do y’all do for fun?

Hello.

I’m curious about what heart related issues you may have or what heart related symptoms you have.

Me, I’ve been treated for high blood pressure since I was about 20 (2002ish) My back started around then too. I’ve had tachycardia for a long time, but it really wasn’t treated until about 10 years ago when I also began having heart palpitations. I was prescribed a beta blocker to help control all 3 issues. I’ve had multiple EKGs over the past ten years, and they also show normal results. I frequently get a pain in my chest and a heavy feeling too. Lately I’ve been getting very dizzy and almost black out when I stand up from a seated position.

Currently, I have a Zio Patch taped to my chest to determine if my heart has any issues undiagnosed. Even with my beta blockers, I still get high heart rate and occasional palpitations. When showering, my heart rate can go up to 130-140!

Could be history of heart issues be attributed to AS? Would a biologic help with heart problems?

Over the past ten years, and especially the last 2 I feel like my body is just falling apart. I hurt all the time, I’m tired all the time too. I’d love to be able to make sense of it all.

Am I responsible for keeping meds in fridge or will they have them sited at hospital? Do you just sit in a recliner while it’s done? Also why does it take so long?

Diagnosed with AS two years ago. Concerned I have something else too?

I also go through times where other parts of my body hurt. Sharp, shard like pains that are consistent over a few days (often in my feet, or hands). Or raw, roaring aches that almost hum (in my shoulders).

Is this what enthesis is? In your experience is this something else? My rheumatologist isn’t concerned, but I think this is starting to be more of an issue than the SI pain for me. I just don’t understand!

Yes, I’m definitely in a flare if that helps! Does anyone have any idea? Or are you diagnosed with AS and something else?

Thanks in advance.

Hi AS, SPA and PSA family. I thought I would share this and ask a question. It turns out I may have been taking my prednisone and nsaid at the wrong times around my shots. After my Cosyntex shot Tuesday morning I felt very tired as usual after a few hours and my Enthisitis in my sacrum, Achilles, knees and plantar flared that night requiring icing. The next morning an hour after i gingerly got up my sacrum inflammation went into over drive basically crushing my nerves (we all know that feeling) and after 4 hours of ice still bad enough to need IV. So painful trip to A&E where my pain was so bad they wanted to xray me. So background… In order to give my liver a break I normally reduce my daily 5mg prednisone and diclofenac NSAID a day or two before my Cosyntex and take no meds on the day but apparently that’s not a good idea. I’ve learned in hospital and in forum that flare after taking injections can happen so taking prednisone and nsaid before and after shot can help. I’ve failed TNFI and wonder if that’s why? No rheumatologist ever told me this. If I’m wrong I’ll obviously remove this post but wondering if this happens with others?

39M looking for shoe recommendations. The fam and I are headed to Disney for a week in late January and I expect I will be on my feet for hours at a time. Looking for recommendations to help me survive - specifically if there are any men’s footwear recommendations. I want something with lots of support. Am planning a visit to the podiatrist for a new pair of insoles while I’m at it.

Thanks in advance!

I've suspected AS fr a while now, but my rheumatologist doesn't think so. Most symptoms match but the bloodwork and MRI are negative.

I've struggled with back pain for years but nothing like this. My back has been extremely painful for about a year and except nsaids (ketoprufen) nothing helps. I suspected a disc hernia at least but did a bunch of scans and there is disc protrusion but not a hernia, so it shouldn't be the source of this pain.

Can people please share more specifically what the back pain in AS feels like? It hurts most when I bend or try to get up from bed. Sometimes I feel like the pain itself will make me puke.

Hello everybody, completely new here. I have had chronic pain from sitting down for around 7 years now. It can also hurt if I lie down for too long. I think the pain stems from coccyx and/or SI joint. Did an MRI 2 years ago, no degeneration could be seen in the SI however, suprisingly both my hip sockets showed inflammation. In general, if I am active and do my exercises without being forced to sit (desk jobs are basically out of the picture), then my day to day is fine. But life is busy and I find it difficult to find time to get to the gym regularly. I have always been scared that it may be AS or developing psoriatic arthritis (sister has psoriatic skin issues and uncle suffers greatly from psoriatic arthritis).

I have been thinking about seeing a specialist although unsure who to see. What were your first signs or clues and who did you approach for answers?

I don't feel as though my fatigue is from pain or lack of sleep, I've felt that before prior to being on biologics and this is different.

However, I still have a real lack of energy, a sense of lethargy or malaise, nausea, throbbing head, just a real yuck feeling of flatnes that can strike at any time during the day.

My most recent blood test showed low levels of Vitamin B12. (Doc has asked that I eat more red meat and take B12 supplements and have a follow up blood test in 6 months to rule out absorption issues) What other things have you tested for to understand your low energy levels. Are there any unusual factors you have found contribute to your energy levels? Anything that you've discovered that correlates to your mood and energy?

I’m 32 and getting weaker everyday, I’m a stay at home mom but love cleaning and organizing, recently I can only clean while sitting in a swivel chair I can’t stand for very long periods, so I applied for disability as much as I didn’t want to because I’ve always been a worker bee until I met my husband he’s taken care of me ever since. And does being on disability affect anyone’s self esteem?

Who has taken methotrexate for AS? Pro/Negative? My doctor wants me to start it and it scares the heck out of me. I've already failed 2 biological and several other meds.

When I got diagnosed at the beginning of the month, finding this reddit thread was like coming up for air. I can’t even begin to describe how much it meant to read through and see so many people articulating things I was keeping to myself or felt friends and family just couldn’t understand.

Since then though, I’ve been trying to find more resources and groups online. Reddit is wonderful but my family doesn’t really use it and I wanted to find pages or people they could follow going through AS. I haven’t found anything though and it has me wondering, are there any instagram accounts or ppl you follow that are public with their AS symptoms, what living with this diagnosis means and just generally put stuff out there in the name of visibility?

A friend of mine was diagnosed with diabetes and the support she found online from other advocates on instagram was incredible, but I can’t seem to find anyone with AS. Would love to know ♥️

Hey everyone! I'm new here, but wanted to ask if anyone else is struggling with restless leg syndrome. I think mine is related to my AS. I have RL symptoms every night and it takes hours of tossing and turning before I finally sleep. A lot of the time I have to stand up and stretch for an extended period of time or engage in some kind of movement. I have the restless feeling most of the day too. I've reached the point of despair and exhaustion. Any tips on how to reduce/handle that feeling would be appreciated-- or just anyone who can relate!