Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Diagnosed with Ankylosing Spondylitis!

Discussion in 'General ME/CFS Discussion' started by Meruem, Nov 9, 2017.

  1. Meruem

    Meruem

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    So I just got diagnosed with Axial Spondyloarthritis shown in MRI and X-ray.Ankylosing spondylitis can cause fatigue and pain and mostly back pain.The thing is,I'm not sure that that's what's causing all my symptoms.It's a serious chronic disease and it sucks that I have it and not only that,I'm now afraid I have CFS too or some other disease similar to that.I now went from being scared I'll live my whole life with a chronic debilitating disease to being scared I'll live with 2 of those.Doctors say it's what's causing everything,but I've lost my trust in them after hearing so much bullshit the past 6 months.

    Here are all the symptoms I've experienced(In order I started having them):
    -Swollen lymph nodes-Diarrhea-Upset Stomach-Fatigue-Joint Pain-Headaches-Ringing in ears-Muscle twitching-Muscle pain-Back pain
    ----------------------------------------------------------------------------------------------------------------------------
    Some have disappeared,now I'm left with these(In order of severity):
    -Fatigue -- Muscle pain -- Ringing in ears -- Back pain -- Headaches -- Swollen Lymph nodes
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    These are the reasons I'm afraid that I also have something else:
    -Back pain is usually one of the first symptoms of AS,but I started having it after 4 months of being sick.
    -AS usually develops gradually over weeks or months,I got sick in a day..I remember the exact time
    -Doesn't explain some of my early symptoms like lymph nodes,diarrhea or some symptoms I still have like Ringing in ears

    What do you think?Should I keep searching for an answer or have I already found one?Anyone else having the same diagnosis? The good thing is as AS is concerned I was very lucky I caught it early and my prognosis is quite good,but I have to quit smoking asap!
     
    pattismith likes this.
  2. pattismith

    pattismith Senior Member

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    Hi @Meruem ,

    being ill for 35 years, I was convinced most of my life that I was ill from AS, because most of my symptoms were matching from the begining....

    The fact that very often negative HLAB27 women with AS are waiting very long time before they get diagnosed was reinforcing my self convinction.

    But after 15 years of being ill, Rheumatologists still couldn't find any evidence of SA, so I gave up with this hypothesis.

    Are you HLAB27 ?

    What you need to know is that

    -CFS/ME/fibro can co-exist with rheumatic disease (so you can have both AS and ME)
    -it's great that you got this diagnosis because you will receive adapted treatment :)
    -treatment against AS may be usefull for your symptoms of ME/CFS if you actually have it
     
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    My Mum suffered a severe spine injury, back in the 1960s, she was a nurse, an amputation patient fell out of the nurses grasp when transferring the poor soul to a bed
    nurses are supposed to let folk fall in such cases rather than risk breaking their own backs, but Mum couldn't and wouldn't let the man fall on the stump (amputation above knee)
    so Mum's spine was damaged
    then she had spinal surgery and idiots caused her to fall from Xray table onto her back on the rails (old fashioned big xray machine that moved on rails like a railway...and denied she'd fallen to avoid blame)

    the docs, after years of saying she had "Neurasthenia" according to a psychiatrist...ah huh....eventually said they said she had ankylosing spondylitis
    years later turns out it was arachnoiditis (advantages of having MRI scanners)

    she never suffered severe fatigue like M.E. causes though it was otherwise a nightmare for her (partial paralysis of legs, especially right leg, severe pain etc)
    eventually she was horrified to realize that I became even more ill than she was.

    So question is: how severe is the fatigue you have?
    if it hits you like a tidal wave at times especially after any form of stress/exercise and leaves you barely able to move, that's likely to be M.E.
     
  4. Meruem

    Meruem

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    I haven't been tested for HLAB27 yet but radiographic feature like sacroilitis are much more reliable in diagnosing this disease so I think there's no need to.
    I hope I don't have both..I feel like many CFS/ME cases are actually misdiagnoses of a condition or multiple ones..Maybe this one is my case..I'm already on Cymbalta and Lyrica and I'm starting TNF soon..
     
    pattismith likes this.
  5. Meruem

    Meruem

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    I'm never bedridden but I spend most of the time the past 6 months at home..I only leave to see doctors and maybe go see a friend once in a while for a bit.
    I feel like no matter what I do(pacing or be active) the fatigue is the same,it's just so much for me to do things.I wanna do the things I used to do like a normal person or at least close to that,so I've chosen to stay home and be patient..
    I have a theory that this maybe started as a reactive arthritis and then turned into AS,my Rheumatologist agreed with me..who know's..I just hope it's not both..maybe at least some mild fibromyalgia and AS..
    AS has much more effective and standard treatment than CFS/ME so I guess if I'll get better with treatment then it was AS indeed that caused everything.
     
    pattismith and SilverbladeTE like this.
  6. aquariusgirl

    aquariusgirl Senior Member

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    A friend of mine developed AS....and he has the FUT2 genes & IBS....

    I did some research for him & the SPondylitis Assctn of America says 60 genes are involved & "one classic hypothesis has been that AS may start when the defenses of the intestines break down & certain bacteria pass into the bloodstream , triggering changes in the immune system."

    If it turns out you have the nasty FUT2 snps ...it could explain gut problems... H antigen non secretor etc.. It has been linked to UC and Crohns.

    Also, there is lots of literature on FUT2 and e B12 deficiency.. & B12 deficiency is linked to fatigue.

    I don't have any more for you..google for more info.
     
    pattismith likes this.
  7. Rlman

    Rlman Senior Member

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    Toronto, Canada
    a low startch diet has been helpful for some AS patients apparently
     

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