ankylosing spondylitis, lupus, bursitis Info please

L1985
L1985 Member Posts: 120
edited 11. Jan 2012, 14:51 in Living with Arthritis archive
Hi everyone

Just looking for some help/advice. When I first saw the rhuematologist 7 months ago they thought I had the start of RA. Then they thought my joint pain was due to me having an overactive thyroid (graves disease) I had a total thyroidectomy in October and since then I have been taken more seriously at the rhuematology department as they are now saying its defiantly not thyroid related joint pain.

They have said its not progressing like RA would and nothing showing in my bloods. I started with joint pain in my hands and knees and then recently started with pain in my hips. I was told the hip pain could be Bursitis due to walking funny with my knees. They have agreed some sort of auto immune thing is causing the joint pain but as yet they dont know what.

Last time they mentioned ankylosing spondylitis due to my hips and knees but on researching ankylosing spondylitis it says that sufferers get back pain. I get an ache in my back but put it down to lifting two small children. my back doesnt hurts me the most which I thought it would if I had ankylosing spondylitis. I just wondered what other peoples symptoms of ankylosing spondylitis were.

I cant lay on my hips at night they hurt so much. I had a steroid jab 6 weeks ago which worked a treat but now im back in pain. Sorry in advance for too much info but my partner and I are wanting to try for another baby in the next 12-18 months but at the moment it hurts my hips so much to open my legs :oops: that I dont know how we are going to be able to.

Does the hip pain im describing sound like Bursitis? My hips ache and feel like hot pokers are sticking in them.

Also my thyroid doctor said its common to have graves and lupus when I researched lupus I read the 2 main symptoms are joint pains and fatigue which is defiantly what i suffer with. Does something always show up in your blood or lupus or can you be sero negative?

I just wish I had a name for the joint pain. The hospital are wanting to start me on sulfasalazine but I dont really want to take them when I dont know what I have if that makes sense?

Thanks in advance

Lulu xxx

Comments

  • frogmorton
    frogmorton Member Posts: 29,848
    edited 30. Nov -1, 00:00
    Hi Lulu

    Poor you!! In limbo like this. Mind you l am a bit too...l have had some sort of inflammatory arthritis for a good while and as yet no real diagnosis. It is called by teh rheumy either RA or sero-neg and at the GPs they have in the past called it palindromic. I have been taking hydroxychloroquine for many years and been fine on it and things are much better.

    a DMARD like sulfa is a good start and a good medication for all of the possible diagnoses. The only thing worth checking is if it is ok to take when you are pregnant :???: Some are you see and if your inflammation settle you stand a far better chance of being able to try for a baby.

    There are folks on here who have ank. spond, but they obviously haven't been in today to give their input so l wanted to help even if only a little.

    Love

    Toni xx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    No info or advice but I just thought I'd bump it up in the hope someone might see it who could help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,848
    edited 30. Nov -1, 00:00
    Good idea Sticky

    another thought - you mention bursitis as one possibility...sometimse 'they' will give you a steroid jab into it - partly diagnostic :???: worth a try maybe??

    Bursitis is agony :sad:

    Love

    Toni xx
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hi, Good luck in your diagnosis, just mention tp rheummy u want to try for another baby and discuss meds and hips with them.

    All the best
    Clare xxeyeore-1.jpg
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Hi,
    Can't help with the rest but might be able to re the bursitis issue as I've got bursitis in my right hip at the moment and it bl**dy hurts. (You'll know that already I suspect). Sometimes I can't sleep on that side. I've got physio exercises to do but they make it worse.
    Yes the poker feeling and heat are familiar to me. Have you thought about asking for an MRI on the hip - that "sees" further through the joint than an ordinary x-ray will.
    Keep pushing for answers.
    I hope you feel better soon. Take care,
    Grace
    Turn a negative into a positive!
  • L1985
    L1985 Member Posts: 120
    edited 30. Nov -1, 00:00
    Hi everyone

    Thanks for the replies. I find it so frustrating when you havent got a name for whats wrong. Saw my thyroid doctor today and he said the last blood test showed no inflamation which i dont understand as still have joint pain. He also said i have positive antibodies for lupus but the rhuematology team havent diagnoised me with that so dont really understand what all that means? Do i have lupus?

    Thanks for listening

    Lulu x x x

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