r/ankylosingspondylitis

Recently started working full time (I had been a stay at home mom, and was honestly struggling with fatigue daily then) and I am really having a hard time with exhaustion. How do you guys function with AS and work??

Initially, I thought the structure and fast paced environment was beneficial - that the fatigue was because I had too much free time. However, about 3 months in with the job and weekends are for sleep. I can hardly keep up with house work, laundry, kids sports, family…and work. My boss is aware of my condition. I usually get through the day ok, it’s when I get home that I’m having such a tough time. My entire body is exhausted.

My AS is mostly controlled, minus some episodic flares with random joints that typically only last a few days and subside. The stress of the job is mentally so taxing. I feel like I’m failing everywhere at the moment.

I've been suffering severe back stiffness for 10 months which worsened 6 weeks ago and suddenly became accompanied by very deep aches in my hips, glutes and thighs, as well as shooting sciatica pains. Also includes foot on one side, which I think actually began months ago but I assumed I had plantar fascitis. Begun physio which has given some temporary relief but nothing seems to be helping fully. Sciatica usually affects one leg, so my case is already a bit unusual for expected sciatica. I then began having severe rib/chest/shoulder blade/arm pain, so my GP has referred me to a rheumatologist instead of a back specialist. I'm concerned it could be ankylosing spondylitis, my GP mentioned fibromyalgia.

So my question for you: what does ankylosing spondylitis feel like for you? How would you describe the pain? What helps or hurts? Trying to understand if my lower body pain is expected sciatica and the upper body pain is separate, or if one of those conditions I mentioned is likely.

Pain is waking me up during the night and stiffness and hip pain is severe in the morning. I can't drive or attend my office, so working from home. I find that sitting propped up on a bed with pillows behind me and pillows under my thighs, with a heat pad is my main way of being comfortable. And while walking is occasionally difficult and sometimes I'm limping, walking for longer periods does not seem to worsen the pain and seems to loosen me up. But it's hard to begin walking while in pain.

(Disc bulge identified at L4-5 in early December MRI, but at the time was abutting but not compressing the nerve. Physio has said disc bulges are common and not always the cause of sciatica. Blood panels taken in March showed inflammation, and were taken again in mid April and inflammation had risen. Inflammation markers here being CRP and Ferritin. I don't know how long these would stay inflamed following a chest infection though, I had had chest colds from start of Feb to end of March. Original back stiffness came on during the gym, so I chalked it up to a gym injury, but it never went away, obviously. )

I'm trying to get an appointment with a rheumatologist but it will be the June at the earliest, more likely August. I don't know how I can cope with this pain until then.

Hi everyone,

I was recently diagnosed with axSpa and I’m really struggling right now. I’m in pain, exhausted, and grieving the picture I had of my future pretty hard.

I just started Cimzia (day 4), so I know it’s early - and my symptoms are still very up and down and it’s messing with my head.

I’m not looking for false reassurance, but I really need to hear from people who are doing okay.
Are there people here who are living a good life with AS?
Who aren’t constantly in pain and exhausted?
Who found something that worked and got their life back?

Please, if you’re in a good place, I would really appreciate hearing from you.
I don’t think I can handle negative stories right now.

Thank you 🤍

Just curious.

I've been offered an urgent MRI "when I get into a bad flare" but I'm not sure if it works like that.

Hey guys! Its spring where I live now and things are going crazy outside! Everyone is looking so good and im super interested in this girl. We have only met a couple of times and shes a co-worker. However I cant stop thinking about her. She asked me if I wanted to go on this running event next Saturday. I haven't replied yet.

The problem is that im getting worse and worse (currently on no meds). I am feeling bad almost all the time lately, and she knows nothing about that. I haven't told any one at work about my health situation.

I just wish things were easier. I want to participate on events, and be strong, but I cant anymore. I used to be able to lift weights and do physical straining things. Now I need to priortize resting, and im also scared of meeting someone and showing my weakness. Its really hard to open up.

I also have celiac disease and a quite severe IBS as baggage aswell. I feel kind of lost. Im trying to tell myself to not care so much, but its hard in these times. I really like this girl!

Hello fellow warriors, 27 female, living with AS since I was 7-8 years
I am about to get married in an arrange marriage setup, I’ve told the guy about my diagnosis but sinfe he works in a different field he doesn’t seem to care much about it. Maybe because he hasn’t lived with me yet so he cannot tell the severity
He talks about having babies at some point
5 months left for my wedding
Im concerned im ruining his life
I will turn into a burden on him
I am currently taking tofacinib BD, I dont know if its pregnancy safe or not, what if I have an unplanned pregnancy, will I able to keep it because I was taking tofacinib before pregnancy
Should I tell him that there is a risk of me passing this on to my kids genetically
He is supportive so far, he says he will take care of me but what if it all changes once we get married and sees the health issue head on
Ive never tried biologics because tofacinib works well for me
Moreover the pain is localised to one of my knee and one hand, back doesnt seem to bother me much so far

Does anyone here have both? I’m trying to figure out how to sleep propped up to reduce stomach acid but nothing is working because it puts my spine at an awkward angle and I’m in so much pain! Has anyone else dealt with this and found a solution that worked for them?

Edit to add: yes, I am on omeprazole already. I have Barrett’s esophagus and EoE. I’m asking for those with ankylosing spondylitis if they’ve been able to find a way to prop themselves up for sleep without causing pain.

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I was up at 3 am unable to sleep and scrolling Instagram. I came upon a post from axstv about Motley Crue guitarist Mick Mars and his battle with AS. He started having issues as a teenager and was finally diagnosed at 27, right as the band hit it big. One thing he said that really resonates with me was holding on to a door frame and just stretching back trying to get something to pop to feel some relief. He's now 74 and pretty much retired and fused. Now I saw Motley Crue many times through the years and never would have thought anything was wrong with his back.

I also read about the lead singer of Imagine Dragons having AS. Never saw them so I can't say anything about that.

Meanwhile I'm at a concert struggling to stand and these guys are jumping around on stage for hours

For me… Ankylosing Spondylitis took away a part of my childhood.

I was diagnosed around the age of 8.

School life… somehow I managed. I smiled, adjusted, and tried to live normally like everyone else. But deep inside, things were already changing.

The biggest thing AS took from me was probably my college life.

I never really got to experience it.

By that time, life had become completely different for me. My hips were severely damaged, I was in constant pain, and eventually I ended up on a wheelchair for a period of time.

Going to college like a normal student wasn’t even possible anymore.

While people around my age were building memories, friendships, enjoying campus life, and exploring their future…

I was trying to figure out how to live with pain inside my own body.

But at the same time, AS gave me some things too.

It made me mature much earlier than my age.

It taught me patience.

It taught me how to stay calm even when life feels unfair.

It taught me how to keep moving forward even when things are falling apart internally.

Most importantly, it taught me to always look for the positive side even in difficult situations.

I won’t lie and say this journey is easy.

It changes you.

But maybe that’s the strange thing about struggles like this…

They take away one version of you, but slowly build another.

Today, even after surgeries, pain, limitations, and everything this disease has taken from me…

I’m still here. Still trying. Still rebuilding myself step by step.

Still learning.

Still fighting.

Still moving forward one step at a time.

Hey everyone,

I’ve been diagnosed with Ankylosing Spondylitis and I’m HLA-B27 positive, but lately my rheumatologist thinks I may actually have psoriatic spondyloarthritis / axial PsA because I seem to have overlapping symptoms from both conditions.

I have bilateral sacroiliitis with chronic inflammatory lower back pain, and during bad flares the pain and stiffness spread into my upper back and neck as well. I also deal with severe morning stiffness, fatigue, shoulder joint pain, finger joint pain, mild heel pain while walking, and psoriasis mainly on my feet.

I started treatment with Remicade (Infliximab), then switched to Simponi, and later went back to Remicade because the response wasn’t as effective as it should’ve been. Unfortunately I’m still struggling a lot and right now the pain and stiffness are pretty severe. Because of the psoriasis along with the axial symptoms and peripheral joint involvement, my rheumatologist now wants to switch me to Tremfya.

I’m honestly confused because my spine and SI joint symptoms feel very AS-like, but the psoriasis and other symptoms point more toward PsA. Has anyone else here had a similar overlap situation or been diagnosed with axial psoriatic arthritis / psoriatic spondyloarthritis?

I’d really appreciate hearing from people with similar experiences, especially if you’ve used Tremfya. Did it help your SI joint pain, neck stiffness, fatigue, or overall inflammation? Did TNF inhibitors stop working well for you too?

This condition has become very painful physically and mentally, so I’m just trying to understand where I fit and what treatments helped others in similar situations. Basically what's wrong with me?!!!

Thanks in advance.

Pain when working

Hi so I started a new job about a month ago so I'm constantly on my feet three days a week 8 hours each shift. I'm in so much pain after every shift it's worse when I work more than one day in a row. My Dr said my simlandi is working for my joints but I just don't know if it's even worth having a job if all I'm in is pain. My last job I was in pain too but not this much but the pain just doesn't get better with my jobs and stuff and I just don't know what to do.

Finally getting my biologics next week!

Long time lurker/ occasional commenter!

I'm starting biologics after a very long and arduous 10 year health journey. I'm in the UK and whole the NHS is a blessing, but its been very difficult and It's taken me so long to get to this point and I'm so relieved!

The stress continues though for now! I'm worried about doing the injection (more doing it wrong etc) and also having side effects as right now I'm on no meds so I'm abit worried. I've always been abit of a hypochondriac though. One of my worries is I'm allergic to it lol.

I know that some people experience benefits in 3 days, some 3 months and some no benefits at all! It's all a mystery for me and I have ibd too so I'm hoping the meds help both!

Any tips anyone would like to share would be greatly appreciated!

I cannot put into words how hard it has been to get to this point. This sub has been so overwhelmingly helpful. For the longest time I felt alone, it's impossible for someone who's not experiencing what we deal with to understand. The events we have to miss, the walks we get anxious about, the fatigue and pain and lack of sleep. It's so nice to have this sub and to see I'm not the only one! So thanks guys!

I was diagnosed with axial SPA a couple months ago, but I've been dealing with symptoms for two years now. It's been extremely debilitating, and last year was the worst before I was diagnosed with it. I was on ibuprofen every single day, multiple times a day. Since my diagnosis, I was put on naproxen and omeprazole and i take it evey day twice a day. If I even miss a dose and take it once a day, I’m in a lot of pain.

Following my follow up appointment, I've been recommended to take adalimumab. I'm just really concerned. I've also started to get more symptoms. I believe I had costochonditis and I'm really hesitant to go on biologics. I've seen so many great experiences whilst taking biologics and how it put people almost in remission and how they can go back to their daily lives again. But what really bothers me are the side effects. I don't want to lose hair. I don't want to develop any other diseases or any other conditions, and I don't like the increased cancer risk. I want to know if I have any other options? Has anyone been on naproxen long term, and what are their experiences with that? And is there any other medicine that I can use because I don't know what to do now.

During the consultation, within the first 3 minutes, he says he thinks I have Ankylosing Spondylitis. When he examined my shoulder, he was actually appalled by the state it was in and said it was a “bad shoulder” & mentioned the swelling. I am currently tapering off 20mg Prednisone on and 15mg Meloxicam.
Here are my labs:
CRP: 1.0 mg/dL (Lab range is 0.05 - 0.5). It is flagged with an "H" for High, Anti-CCP, RF, and ESR were normal. He was going to start Methotrexate but took it back because I haven't had an ANA test yet. I showed him my Ana was elevated in 2019 but he forgot when prescribing it & thought it was a recent test. He told me I have "no signs of inflammation." That was his reason for taking the prescription back. And he said he doesn’t know what’s going on with me when he’s getting me tested for AS. When I asked me not being inflamed is possible since 1.0 is double the limit while I'm on steroids, he got extremely rude and basically saying he’s going by science."
I wasn't even arguing for those particular meds, I was asking for a clear understanding of his reasoning and how he would treat me if all my test negative seeing how that’s very possible. I was concerned because he kept acting like I dont have inflammation and pains which I clearly do. He treated me like a pill-popper just for wanting to understand my own results. He even told me I should find another doctor because I was asking follow-up questions. He ordered me to get a hla-b27 test, sacarum/coccyx mri & the Ana test done. The problem is where I’m from it takes 2 weeks to get the bloodwork results back.

Is this normal, to not give me anything in the meantime when I’m in a lot pain until the ana comes back? He told me to go to the er to get medication then they’ll send the results back to him.. like what?

Ps. He’s almost 80 if not 80 already

Hi everyone!

I have been diagnosed with these illnesses for a while now. I take duloxetine and sulfasalazine, occasional tramadol when flares get bad. I cannot work because of the bad pain, brain fogs and debilitating fatigue. I try to balance my life by pacing, rest and movement. That is usually enough, but the flares are getting worse again. Last bad flare lasted the whole summer, had to use a cane just for walking around the house. It looks like I am getting close to that point again.

I am desperate for any advice that helps you stop the flares, debilitating pain and exhaustion.

My rheumatologist when I asked for full spine imaging " anklosing spondylitis doesn't affect the spine, only the sacroilliac joints."

That doesn't sound right to me...

I have an appointment with a different rheumatologist coming up. But I have been having horrible pain in my upper spine/neck. This is obviously related to anklosing, right? What is your experience with spine or neck pain/problems? Did imaging show anything? Was it related to anklosing spondylitis? Was it something else?

Tagging this as a win. I know life won't get better overnight. But the relief of knowing that feeling like a 96yo instead of s 36yo every morning is not in my head, is... immense.

The bottom of my rib cage in the front is always on fire. Kinda feels like I've done 500 crunches but it's definitely rib pain, not muscular. My whole rib cage often hurts but not like this. Does anyone else get pain here?

Hello community, I got yesterday first shot of Adalimubab (Yuflyma). I didn't expect any immediate impact (or rather expected to be possibly tired afterwards)...

In the night, I woke up around 1 am as usual and went to the toilet. Normally, in that time I have quite heavy brain fog and feel terribly tired. What shocked me was the feeling tonight, where my mind was completely clear and I felt great mentally (physically still had my usual pain). I was so excited that I couldn't fall asleep anymore, thinking about being it a coincidence or real effect of Adalimumab.

What is your experience with the first shot? Is it possible to feel positive impact already during the first night or am I making this up in my head?