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I think I may have AS

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tdbates
tdbates

Hey everyone! I'm new here and in all sorts of pain. I am a 39 year old female, homeschooling mother of twin girls. I was diagnosed with sciatica about 5 years ago and then fibro 2 years ago but I don't believe I have either of those. I also tested positive for SIBO two years ago and I've been living with IBS since I was a child.  I went to a rheumatologist about a year and a half ago and he suspected AS but I tested negative for HLA-B27 and my ex-rays at the time were non conclusive. 

My symptoms are dull, aching pain in my lower back, hips, buttocks and legs. Sometimes it's just my thighs, other times it radiates down my calf and into the tops of my feet. I get a really bad pain just below my knees, where the chin bone meets the knee. I have always been active but the past few years have lost a lot of flexibility due to my hips; everything just feels stiff. Sitting is the worst. Laying down is uncomfortable without my heating pad and the pain will wake me up many nights. It's worst in the mornings and a few hours after a workout but not during the workout itself. I go through periods without much pain, but then they flare up and I hobble around. 

I've been dealing with this pain for awhile, but in the last month my achilles tendon on my right foot has been very painful. This kind of came on out of nowhere and doesn't seem to want to go away. And now the bottoms of both of my feet ache almost like they are bruised. I had let the AS theory go but in my research about my achilles it came up again. 

I guess I'm just seeking opinions. I'm not sure if I should try an orthopedic doctor or go to another rheumatologist. It seems like many of my symptoms line up with AS but of course they line up with a few other things as well and I'm making myself crazy with the internet researching. 

Thanks for reading!

Tracy

0 likes, 2 replies

2 Replies

  • lisalisatheone
    lisalisatheone tdbates

    Posted

    This sounds like me but I did have the sclerosis of the sacroiliac joints which was conclusive and I had psoriasis so they labeled it psoriatic spondylitis.  I had all of your pains but then some.  The fatigue would hit me like a ton of bricks and I also developed pain all up and down my spine including my neck and into my shoulders.  I developed some eye issues and tinnitus too.  I noticed myself saying “excuse me could you repeat that” a lot.  I became depressed because of this disease.  And I noticed that it got worse after they yanked my appendix.  Have you sought a second opinion?
  • lisalisatheone
    lisalisatheone tdbates

    Posted

    Also, try a rheumatologist and an orthopedic surgeon at a teaching university if you can do so.  I had to go to 5 rheumatologists and one orthopedic surgeon BEFORE I even believed I had it.  It’s one of those illnesses/diseases that can appear like so many others and without some extreme evidence (high seed rate, sacroiliac changes, hla positivity) so many doctors don’t want to call it what it appears to be.  I don’t blame them because the drugs that they give us to treat the disease are incredibly harsh on our bodies and can cause cancer/serious infections and doctors want proof, but proof without knowing what causes these autoimmune nightmares which are often just symptomatic at first but quite debilitating if you’re the one experiencing them is so difficult to determine.  Maybe ask for a short course of prednisone and see if you feel better.  If you do, then it can be fairly assumed that you have some kind of inflammatory issue going on.
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