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new to all of this , and kind of lost

Posted , 5 users are following.

taliptg
taliptg

Your knowledge and experience will be much appreciated.

Like I said, I’m new to AS. Still going through the process of being diagnosed. and I have a ton of questions and not much access to my doctor since I live in France this days for work and I don’t speak the language just enough to get him .

I’ve had pain for a few years now , and it was mistakenly diagnosed as Fibromyalgia , having had an idiot for a doctor who refused to give me any test aside from a physical (no X-ray or MRI ) so I suffered quietly , thinking I have FMS and thinking it has no actual treatment . the past year the pain got a lot worst , and I decided to try my luck with some medication for FMS ( to this point I tried mostly alternative medicine), so I went to see a new Rheumatologist here in France , and he said it isn’t FMS , and probably never was , he said it’s probably Spondylitis , and he sent me to get some X-rays of the sacroiliac (I guess you are all familiar with the procedure ) and they came back positive for spondyloarthritis , and now I need to get an MRi to complete the picture ,

I wonder what kind of information the MRI will give him? since I was told that the having had a positive XRAY means the arthritis is a more advanced and that an MRI is good for when the XRAY is negative .

Also wonder if the fact that there is signs of inflammation in the sacroiliac means it’s going to develop into complete AS.

At the moment I’m taking Naproxen , which helps , I’ve been able to sleep for the first time in years , and the pain has reduced very much , but not completely , I’m not able to do any kind of physical activity , and the doctor has said that physical therapy is no good for spondy , so he said I should just go swimming …. Nothing else .

I’m 29 and I’m tired of incompetent doctors who gamble with my life, I don’t want to end up in a wheelchair because of them … any thoughts in the matter? 

1 like, 13 replies

13 Replies

  • Harleymac
    Harleymac taliptg

    Posted

    Hi there, I am pretty much in the same position as you but I have no sign of radiological sacroiliac damage as yet. As far as I understand the difference between X-Ray and MRI is that the MRI shows inflammation as well as damage to the joints although I can't be sure. I'm glad to hear naproxen has helped, have you been advised about SI joint/facet injections? It comprises cortisone being injected directly into the joint under ultrasound imaging and is supposedly pretty effective. I'm currently awaiting this treatment. It is said to be effective from a few weeks up to a year, dependent upon the patient. Maybe worth a shot? Sorry I can't help any further. Best wishes, Jade 😊
    • taliptg
      taliptg Harleymac

      Posted

      Hi jade .

      Thanks for your response .

      I'm still in the process of getting diagnosed . I still need to get an MRI . Like I said . My expirience with Naphroxen has been short . And I think it hit me like right on the spot because the results were very fast . Like a week later I felt a lot less pain and gradually I can honestly say I'm sleeping better . And it's been a long time since I got this relief. But it's not completely perfect (I don't know if there is such thing ) and at the moment I'm still very limited .still very tired . In terms of pain I have good days and less good . And my back and neck have a reduced range of motion . So safe to say the Naphroxen isn't completely doing the work . Just the surface. Maybe in time but my doctor doesn't want to consider new mess before the MRI . I did hear a lot about enebrel Injections . A lit of people with AS talk about them helping them . Also I'm trying hard for the diet thing . And swimming . Even though that one is hard because at this point I get pain half way through the first pool. Lol . It's funny to feel 80 yo at 29 ...

  • serena87418
    serena87418 taliptg

    Posted

    Have you been tested for the HLA-B27 antigen? That was the deciding factor of my AS vs Lupus/RA.
    • taliptg
      taliptg serena87418

      Posted

      Hi .

      Haven't been tested yet for the antigen . I don't think they do that for everyone . Besides I'm already showing damage to the sacroiliac . And I understand not all patients are positive for hla-b27 . And all test regarding lupus have been negative like pcr .

    • serena87418
      serena87418 taliptg

      Posted

      I have requested xrays and MRI and I have been ignored and told I dont need them. So confused. I am from Ohio in the US
    • taliptg
      taliptg serena87418

      Posted

      But eventually you had the xray done . Right ?

      I live in France .

    • serena87418
      serena87418 taliptg

      Posted

      They were going off a CT scan that was done back in 2011. No xrays or MRI since. Diagnosed based solely on symptoms and positive HLA-B27
    • taliptg
      taliptg serena87418

      Posted

      But you mentioned having lupus . Right ? Not AS ... AS far as I understand AS needs to be dignosed with an xray and MRI .
    • taliptg
      taliptg serena87418

      Posted

      Sorry . Now I understand what you said about having AS in oppose to lupus .

      Anyway . It's all ready AS . Naming it spondylitis.is kind of a temporary thong from what I understand . Since most doctors I talked to don't recognise spondylitis as something other then AS . So AS it is ... great fun !

      Really though I feel better with medication which also points to AS . And I've started elctrotherapy which helps too .mostly with the peripheral arthritis and enthesis. . Recommended.

    • serena87418
      serena87418 taliptg

      Posted

      Have never heard of the electrotherapy here and what is the enthesis in regards to the AS? Never mentioned to me. US is so behind you guys.
    • taliptg
      taliptg serena87418

      Posted

      Entehesis. Hopefully I'm spelling it right .

      It's an inflammation of the entry points for the tendons in to the bones . It's one of those things that happen with AS .

      Electrotherapy I've heard is very helpfully for pain management and care of inflammation. I've been treated with elctrotherapy in the past for music knees (arthritis from AS . At the time I didn't know it wasounds that )

      It was very good . Today I do it every day . A d it's good .

      There are home appliances which you can buy . Not expensive . But try and get some guidance from a physical therapist

  • yogesh15505
    yogesh15505 taliptg

    Posted

    Start doing basic neck exercises. Avoid lifting heavy stuff, running, jumping and gym. The better way at this point is to start with yoga or better still swimming. Swimming along with medicines will give you much relief and this is from someone who has a fused spine and started suffering from age 13. Bear the pain as much as you can and use the painkillers for SoS as long term usage will damage the kidneys and also your reproduction capabilities.

    Best of luck.

  • yogesh15505
    yogesh15505 taliptg

    Posted

    I heard from my doc that the SI joint/ Facet injections need to be taken about 3 times a year and in India it work out to something like 30K per injection. Anyways this might help ease things for you as you are in the initial stages. Try to get in proper exercise daily, control your diet and ensure that the waist size does not grow. Also remember that any fever or other illness will give a prior intimation in the form of increased back pain. Life will be much easier if you work around the limitations and try to overcome them in the meanwhile. Best wishes to you..
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