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OI/Pots pain and Ankylosing Spondylitis?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by kerrilyn, Mar 24, 2011.

  1. kerrilyn

    kerrilyn Senior Member

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    I started to have serious low back problems in my mid-late 20's (now I'm in my early 40's) and thinking back I also developed OI/POTS symptoms around the same time, I just didn't know what OI/POTS then. Even as a teenager I had back pain. I was dx'd with DDD/mechanical low back problems before I was 30 and after requesting a TTT was dx'd with dysautonomia last year.

    Low back pain, especially the SI joint and hip pain were the first things to develop. The several vertebrae in my lumber region do not move properly. Now I have pain all along my spine up to my neck, which burns at times. I was dx'd with fibro following whiplash but for the past year the pain has been more localized than the overall widespread pain.

    I've also been experiencing more pelvic pain immediately following menses, and altho I have endometriosis and a fibroid, the pain starts when (or at least accompanies) the back pain flare up. Now I think the pelvic pain is originating from my back too, possibly a pinched nerve. The latest joint to give my problems is my elbow, which also feels like a pinched nerve (around the funny bone), the pain and sometimes numbness radiates into my hand and collarbone. I've been reading about Ankylosing Spondylitis and starting to wonder if that is a possibility.

    Anyway, the other thing I've noticed is that when these painful areas really flare up, I feel sicker overall, and my POTS is worse. I've suspected the POTS has a hormonal link for me because it is worse at certain times of the month, but just now have I realized it may be more tied into when I have increased pain. I'm wondering if it's happening because the pain is wearing me down or is it a reaction to inflammation, with or without AS?
  2. toddm1960

    toddm1960 Senior Member

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    Rochester, New York
    You can check for the genetic marker (HLAB27) but it's not a diagnostic test, just because you're positive doesn't mean you have AS. I have alot of the same pain you talked about and I am positive for the marker and still they're not sure if I have it. How have NSAID's worked for you?
  3. Gamboa

    Gamboa Senior Member

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    My husband has recently been diagnosed with undifferentiated spondyloarthropathy, which is in the same group of arthritis as Ankylosing Spondylitis (AS). He tested positive for the HLA-27 gene, had a high sed. rate and and low hemoglobin but to have the AS diagnosis you have to have an MRI (or maybe just CAT scan) and show signs of ankylosing in the spine. Despite years of chronic lower back pain his MRI didn't show the ankylosing. They then call it "undifferentiated".

    It was a rheumatologist who diagnosed him and he is now on some medication to help control the disease.

    In case you are wondering, I have ME/CFS (Canadian Consensus Criteria). I am a little concerned that I gave my husband something , such as XMRV,(if it turns out to be a valid retrovirus) that caused him to develop his inflammatory arthritis since it is an autoimmune type of arthritis that is triggered by currently unknown events in genetically susceptible people.

    Have you seen a rheumatologist?
  4. Graeme

    Graeme almost there...

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    I've AS or something akin to it, despite being HLA B27 negative -apparently 15% of AS sufferers are negative. The most popular theory of the illness is a sensitization to certain gut flora and molecular mimicry. This probably being the result of an increase of translocation of LPS from the GI tract, which is virtually universal in CFS. I've found an extremely low carb diet to be the most effective treatment. If I eat carbs or supplement with MSM the pain and stiffness grows exponentially worse in short order. True, the only way to diagnose the condition is with a scan. Unfortunately it's only likely to show up after several years of untreated disease. My advice is scratch the diagnosis and try the low carb diet.
  5. kerrilyn

    kerrilyn Senior Member

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    Thanks for the info. I had a CT of my lumber spine 15 yrs ago, have never had an MRI. Only cervical xrays were taking following whiplash and at that time several Rheumy's dx'd me with Fibro. I had a normal sed rate.

    My back/pelvic and hip pain in particular seems to increase when estrogen is at it's highest level in the cycle. I've assumed there is some sort of swelling occurring. That's why I thought it was originating in the pelvic area, but I think it's actually coming from the back and radiating into the pelvis. In the mornings the whole low back is stiff. The whole area just feels like it's glued together. If I try to round my back the lumber area doesn't budge.

    I've never really thought about it in relationship to diet, but I'll have to start. I read on another forum that some POTS patients do notice an increase in symptoms when they are experiencing pain.
  6. Gamboa

    Gamboa Senior Member

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    Canada
    Hi Kerrilyn,

    My husband was given the diagnosis of fibromyalgia at first by his GP. This changed once he saw a rheumatologist and got back all the abnormal results and genetic analysis.

    If the last scan of your back was 15 years ago, you might want to get a new one done. Things could have progressed since then.

    To Graeme: what is LPS?

    I've been reading about all these forms of arthritis and how allergies and gluten sensitivities might be making them worse. I've just found out I have lots of food allergies (by skin testing, IgE) and a gluten sensitivity so since I'm now going on a gluten-free diet my husband will try it also. Hopefully it will help him feel better.
  7. toddm1960

    toddm1960 Senior Member

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    Rochester, New York

    Complexe as well as simple carbs?
  8. ramakentesh

    ramakentesh Senior Member

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    Hi I developed Ankylosing Spondylitis (confirmed via HLA-B27 positivity and radiological changes to my sacroiliac joints) and POTS just after my 26th birthday prettymuch out of the blue.
    My symptom presentation was mild to now classic ankylosing spondylitis, periods of vitreous floaters and waxing and waning POTS symptoms from mild to pretty bad.
    POTS is probably my worst problem, although my AS has kicked up a gear in the last few years.
    I tend to find that the inflammation causes a POTS relapse in general, whereas when i first got ill Id get one or the other, never both.
    My type of POTS is a hyper presentation with postural hypertension.
    I have spoken to about nine AS patients who also have POTS. How or why I can only speculate.
    There are a small group of AS patients that also experience m.gravis where autoantibodies attack acetylcholine receptors - in some forms of POTS there are autoantibodies to a3 muscatonic acetylcholine receptors.
    Secondary POTS in Lupus, Rheumatoid arthritis and Sjorgens Syndrome responds well to mestonin (apparently better than other forms of POTS). Whether this is the case in AS is yet to be seen.
  9. Graeme

    Graeme almost there...

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    Montreal
    LPS (Lipopolysaccharide): fragments from the outer membrane of gram negative bacteria. You'll find inconclusive evidence about the cause of A.S. All I know is that it's night and day with and without carbs. And that's simple sugars too, though I think they're not as bad.

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