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So what's your pain REALLY like

Hi. I'm new here. Don't have a diagnosis, but I'm on the route to one, if AS is what my symptoms are. I'll briefly tell my tell history....
So at 19 I was laying flat and I got a pain in my right sacroiliac joint, like it was just about to pop out of place, but didn't. I've continued with this pain since getting progressively worse over the years, im 36 now. At first as it was bareable I just ignored it as mechanical back pain. I then within a few years started to get what I can only describe as flare ups of joint pain all over my body. Just in the joints so like knees, ankles, shoulders, wrists. I can only describe it as a deep bone ache. I actually used to wake up through the night as a child with the same pains mostly in my legs. I got told they were 'growing pains' so I found it odd I was getting growing pains in flares as an adult. The pain was very specific as it would almost always come on at night and be especially worse in the early hours, I'd just want to move and pace about. My sacroiliac joint was always extra painful too but that was more a mechanical pain as in I could move positions to cause the pain if that makes sense. My joint pain wasn't mechanical I could move the joint and it wouldn't make it worse. It was like a deep toothache type pain (I'm trying my best to describe it exactly). I went to the Dr's bloods etc revealed nothing, I'd get painkillers, plod on, feel depressed and alone and consumed with health anxiety then the flare up would go and I'd get back to a relative normal life apart from constant mechanical sacroiliac joint pain. At the same time I had a swollen and painful big toe. Again no real explanation, that progressed and I've since been diagnosed with sesamoiditis which then also added plantar fasciitis on the same foot and achilles tendonitis on the other. I've also always had digestive issues like ibs type. My mam has an autoimmune ulcerative colitis.
I currently feel like whatever I have is progressing up my back, and also into my other sacroiliac joint. I'm losing mobility. I can't carry anything without lower back spasms and it's burns (duno if that explains it exactly) my lower back seizes when I bend, or walk too far or sit too long or lay in a position too long. For the past 6 months I wake up most mornings with the worst stiffness like in my ribs on either side of my spine. It takes ages to wear off but mostly when I get going I'm sooooo much better than being in bed. It's taken me a while to link things and get in tune with my body but after lots of research I'm thinking AS. I've had to push this with Dr's. I'm female and keep getting told it's a male thing. I've pushed for an xray and the genetic test. I'm waiting for xray and had blood test for hla-b27. My inflammatory levels have been taken again but have never been high inflammatory previously, but then I never feel in a flare by the time I've been and had them took. I've got a rheumatology app in May after pushing a referral. I went to Dr's yesterday begging for pain meds after a particularly awful night of that 'toothache' type joint pain in sacroiliac joints, knees and ankles. It also seems to flare bad sometimes when I'm having my period, but not always.

Does this sound like AS to anyone?
Can anyone confirmed with AS tell me exactly what their joint pain feels like? I never have any swelling. Its so odd, hard to explain. It feels like it can move around the joints like in my knee then suddenly my ankle for 10 mins then back in my knee, when I try telling the Dr they look at me like I've got 2 heads. I'm just fed up and want answers. It's getting so much worse lately where its constant. I work full time with 2 kids so it's hard living in constant pain but trying to just plod on as I look fine.

If you made it this far thanks for reading!!! Xx

  1. ,
    We are so glad you found this community and appreciate you sharing your challenging journey. As you are probably aware, testing for and receiving a diagnosis of ankylosing spondylitis (AS) is unfortunately not a simple or straightforward process. Many people go through multiple doctor visits and tests over several years before receiving an accurate diagnosis. It certainly can be a frustrating process (as you've experienced). We're glad you have an upcoming rheumatologist appointment. So many in this community have found a rheumatologist helpful in diagnosing and treating their AS. I thought I'd share these two articles that may help you prepare for your upcoming visit. https://ankylosingspondylitis.net/living/rheumatologist-preparation and https://ankylosingspondylitis.net/living/appointment-tips
    Sending our best in hopes that you will find some answers and relief soon.
    ~Doreen (Team Member)

    1. I think you’re in the right place! So sorry you’re going through this kind of pain with no answers and people giving you the “crazy” stare 🥹. Sounds like you will test positive for the gene from my view point and experience with this disease. I’m female and have everything that you’re describing and enduring. Keep pushing for answers. You have to be your own advocate and do your own research on reputable websites.


      It took 13 yrs for a solid diagnosis that made complete sense and I could finally relate to a list of symptoms. It was affirming and frustrating at the same time. 🙃


      I was diagnosed with Fibromyalgia and general Spondylitis in the beginning. Fast forward 13 yrs later, new pain and swelling in my shoulders, elbows, wrists, fingers, hips, knees and big toes. Also started to see deformities in my fingers and big toes. So I started the specialist visits again - Rheumatology and added a Dermatologist (various skin rashes) & Uveitis Eye Specialist (potential eye issues) to the list. Plus it’s good to establish the patient/doctor relationship if anything crazy happens. So I was diagnosed with PsA in February this year then they added AS to the diagnosis list when the HLA-B27 gene came back positive. Now I’m starting to put the pieces of this puzzle together to figure out the best treatment options for me.


      It’s so hard to navigate your illness with kiddos at home 😅. I’ve been there. I made it and you will too. I tried to see the blessing of my kids piling in my bed with their homework after school and being able to spend quality time without me running around crazy trying to get the never ending list done. I still have the never ending list to do but my kids are all grown up and have their lives. They turned out pretty good considering the circumstances. We are blessed with 3 grandchildren too.


      You will make it and through the love you show your children, they will make it through this very difficult season too. I hope you have a support system (here is a great start) that can help you on those real tough days.


      Thank God for those good days 🙏🏾

      1. thank you so much for taking the time to reply and sharing too. Means a lot xx

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