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Opinion about symptoms(HLA B27neg)

Posted , 5 users are following.

sebastian38246
sebastian38246

Hi all

After taking antibiotics for 2 straight years for a tooth infection I developed a bloody diarrhea that lasted 4 days. 10 days after the diarrhea my pinky finger become swollen for an hour. The weeks after I had random dizzy pains but some 6 months after the diarrhea I started having pain in my sacroiliac joint. Then, the pain spread to my coccyx and sides of the pelvis¿bursitis? 

-The pain improves with exercise but also when lying down.

-The pain worsens when sitting.

-The pain dissapears AT NIGHT,I wake up without pain and it starts again 30 minutes after waking up.

-I don´t have stiffness at all, best moment of the day:when I wake up.

-HLA B27 negative, tested 2 times.

-Inflammatory markers (ESR,PCR) in normal ranges.

-MRI and XRays of the sacroiliac joint came normal.

Doctors told me that it was reactive arthritis and that it would go away(It was a year ago and it definetely didn´t go away)

So I´m asking opinions of people who had ReA. Did you have pain at night, or stiffness? Tell me your stories please.

Thanks

1 like, 15 replies

15 Replies

  • susan84637
    susan84637 sebastian38246

    Posted

    Hi my story is last October I had bad flu for 3 days 2 days later my right hand swoll up bad was very painful I went to doctors who thought it was gout had blood tests was given painkillers .the nx week I was worse couldn't sleep as my chest was awful I couldn't breathe went back to doctors gave me different tablets which made me vomit bad enough my neighbour had to carry me to car to see another doctor told me it was sickness bug go home nd rest by this time I was in agony between everything going on I was too weak to work nd look after my daughter. After still being ill overnight I went back to doctor who rushed me into hospital I had loads of tests nd they gave me a hand splint to rest my hand nd inflammation tablets to reduce the swelling after seeing fracture specialist they then told me I needed to see a rheumatologist so after 4 weeks after I had flu they told me I had rheumatoid arthritis at first then in January this yr specialist diagnosed me with reactive arthritis I was so glad I actually had a name to wots wrong with me after all this time .I've been left with a right wrist that won't bend at all I have awful kidney infections nd muscle pain continuously I get tired easy but I get good days to I've learnt to live with it now they don't think my wrist will ever bend again it's just stuck like it through the inflammation. I work though I'm a hairdresser nd I manage but it definitely changed my life

  • jack_92367
    jack_92367 sebastian38246

    Posted

    For most of the people rea gone completely in 12 months time. Others might have flares with no reason or any other infection in different time intervals. A few become chronic and a few have it severe form rea that might turns into AS. These conditions come from the same family.

    Hla positivity might indicate the chronic version but not in all the cases.

    You could have rea without any abnormal inflammatory markers.

    Mine started with a uti after am intercourse and no bacteria could found. I had had 6 months in remission but now I am in a flare. It has been almost 18 months since the first onset

    I have got still uti symptoms and a mild pain in SI joint.

    Do you use any medicine for pain?

    I would suggest you to see a good rheumatologist.

    • samjo111
      samjo111 jack_92367

      Posted

      Hi jack...u story sounds quite like mine...

      Why made it to return...I mean how did it come back after being in remission...

      How r u doing now?

      Do u experience pain or inflammation in so joint?

    • jack_92367
      jack_92367 samjo111

      Posted

      Hi samjoo.

      I do not know why it came back . May be I am hlab27 positive that would cause for a flame. I am sure I did not caught a new infection.

      I am not doing very well. I have got still uti symptoms like frequency and burning .also a migrating pain in my body .

      Hardly working now.

      Now I have pain in knees and toes

      Strange thing is that I have no signs of inflammation in bones and joints . Whole Body bone Scintigraphy and mri of SI came back normal. I only use lyrica and pain killers.

      What bout you? How youfeel?

    • samjo111
      samjo111 jack_92367

      Posted

      Hi jack...I feel no t well too...I have this constanant inflammation kind of feeling in my knee , hip, and si joint.....not really experience much pain but inflammation...

      Docs don't think that I have rea because normal blood work and no swelling in joints

      But the inflammation and urine issues I am going through are killing me...I cant take it ..

      How are your problems ? Do u experience pain or inflammation or both?

      I m also using pregablin and vitamins tabs

      God bless u

    • samjo111
      samjo111

      Posted

      And I am negative to hlab27 gene also...but still I am having issues...
    • jack_92367
      jack_92367 samjo111

      Posted

      What do you mean by inflammation ? Redness and swelling in joints or?

      The same thing here. Docs do not think that I have rea . They diagnosed me with fibromyalgia.

      I have only pain. And the same too urine problems are killing me. Especially frequent urination.

      I use 150 mg lyrica however am not happy with the side effects.

    • jack_92367
      jack_92367 samjo111

      Posted

      Stiffness and pain all I have.

      Do you have elevated sed and crp levels?

    • samjo111
      samjo111 jack_92367

      Posted

      My inflammatory markers are normal this time...

      They were elevated only when i had initial flare .post physical relationship..

      That time after 1.5 month my crp was 7 (normal range 0-5) ESR was 18 (normal range 0-10 )

      I am negative for most of the blood tests...

      I am in a huge trouble ..no doc seems to help..

    • jack_92367
      jack_92367 samjo111

      Posted

      The very same. Only once or twice I had an elevated crp. Docs even themselves do not understand the disease.

      Yes I am barely working too. My life is ruined.

    • samjo111
      samjo111 jack_92367

      Posted

      How old are you?

      Do you have any issues in ur spine and upper body parts as well?.

      Who had that physical relationship with whom...if u can tell me...don't mind the question

    • jack_92367
      jack_92367 samjo111

      Posted

      30. I do not have any spine pain. I have only pain in lower part of my body , knees and toes.
    • samjo111
      samjo111 jack_92367

      Posted

      Did u had weight loss also?

      Muscle atrophy.?..

      I had muscle wasting in my thigh and arms...I feel week ...plus this burning sensation continuously in my groin joint, knee and urine...don't know what should I do...totally helpless..

      Did u give a thought of trying long term antibiotic course?

    • Vincentworld
      Vincentworld samjo111

      Posted

      Samjo, how u feeling? I have same thing as you. Can you tell me about your spine pain?
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