Falling apart!

Lisa2018
Lisa2018 Member Posts: 6
edited 3. May 2018, 18:53 in Living with Arthritis archive
Evening,

I have recently been diagnosed with axial spondyloarthrosis with evidence of acute and chronic sacroiliitis. I have joint hyper mobility,reynauds phenomenon, positiv Ana titre 1:160. I am on Celebrex. Recently I have started getting a lot of muscle spasms, mainly in my left foot, left side of chest and on the right of my body above hip area at the front. The pain is intense and especially the one above my hip makes me feel like I have been stabbed. The pain is so intense. I have had joint pain since the age of 8 and intermittently have these spasm type pains. Does anyone know if these spasms are linked to my conditions? I am also suffering from a tight feeling around my lungs if I walk up a flight of stairs and feel like my lungs are smaller and can’t fill up as much. Any ideas what’s causing this-is it again muscle spasm?

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Lisa2018
    Welcome to the forum, sorry you are in so much pain. Everyone on the forum can empathize with you as some have similar stories. We also have a telephone number if you wish to talk to someone 08088004050.or you can use the forums to chat to others who are encouraging and friendly.
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 26,244
    edited 30. Nov -1, 00:00
    Hello and welcome :) I wish I could help but none of this lies within my experience. I have RA and OA but my back is relatively OK. I have learnt, from being on here, that back pain can cause nerve problems which could account for some of your problems but really you need to see a doc. What does your GP say?

    In any case, I think you should see your GP about the lung problem. I can get out of breath if I do too much and I do have mild asthma but this sounds different.

    Have you ever seen a rheumatologist just to rule out an autoimmune form of arthritis?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Lisa2018
    Lisa2018 Member Posts: 6
    edited 30. Nov -1, 00:00
    hi

    I saw my dr today who changed cocodamol to tramadol and I am going for some blood tests to see if my inflammatory markers have changed. They are also bringing forward my consultant date as it was another 5 months away.

    It’s very hard getting my head round all this. I can’t believe I am 35 and in so much pain. The dr talked about morphine as well but I feel if I start on drugs like that now I have got no options left when I am older and get worse.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I have PsA (psoriatic arthritis), OA and fibro: I was born with eczema, developed asthma aged seven, both of which are auto-immune conditions. The arrival of the PsA when I was thirty seven was not a surprise.

    We are not docs and cannot diagnose what may be causing your symptoms, but I do know that axial spondy is an auto-immune inflammatory disease that affect the spine so I trust you were diagnosed by a rheumatologist. Celebrex will reduce inflammation but will not control your over-active immune system with the aim of reducing disease activity. When and with whom is your next appointment? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    My apologies :oops: I confused my axials :oops: - it sounds as though you have the OA version so the meds are limited to anti-inflammatories and pain relief. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Lisa2018
    Lisa2018 Member Posts: 6
    edited 30. Nov -1, 00:00
    They say I have oa in my hands but the bit in my sacroiliac joint they think is autoimmune. I also get rashes but they do not believe they are psoriatic in nature. I get blisters on hands and feet which take upto 12weeks to heal.
  • stickywicket
    stickywicket Member Posts: 26,244
    edited 30. Nov -1, 00:00
    Others may disagree but I think it's a wise move not to head straight for the morphine for exactly the reason you give.

    It's hard, though, being in such pain at a younger age because all one's contemporaries are busy doing things that seem way off the horizon. I was diagnosed at 15 and my thirties were probably the hardest times. Two young sons and no new joints at that point.

    Which sort of consultant are you seeing - rheumatologist or orthopaedic?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • barbara12
    barbara12 Member Posts: 21,093
    edited 30. Nov -1, 00:00
    Hi Lisa and welcome to the forum
    Gosh you do have a lot going on, I have sacroiliitis..in fact most of my pain is from there, and take pregablin for it ...sorry I cant help on the spasms..but I am glad to hear that you have an earlier appointment and more bloods to be done..I am with you and SW on the morphine..its always wise to have something in reserve...please let us know how you get on..
    Love
    Barbara
  • Lisa2018
    Lisa2018 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi

    I tried the tramadol that the dr prescribed for the first time today. I had it a while ago for a broken rib and I am sure it didn’t agree with me then. It has made me feel sick. My legs are itchy and earlier I had a funny turn and went all shaky. I will try it again tomorrow just incase it was something else. I suppose I could take antisockess tablets but I am upto 24 tablets a day already with these tramadol it’s getting ridiculous! Does anyone know much about whether they would give me a steroid injection in the sacroiliac joint to help ?
  • stickywicket
    stickywicket Member Posts: 26,244
    edited 30. Nov -1, 00:00
    I hate trammies. They make me feel sick despite anti-sickness meds. I only tried them once when discharged from hospital with them. I soon went back to low-strength cocodamol.

    Twenty four pills is an awful lot for óne day though. Maybe they are interacting. They can't all be for arthritis. Why not ask your GP or pharmacist if it's OK to take them all?

    I think sacroiliacs can be injected but the doc would be the one to ask. Steroid jabs don't work for everyone, though.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Lisa2018
    Lisa2018 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi. I had a telephone consultation with Dr to discuss side effects of tramadol and he has chAnged me to sublingual Buprenorphine.Does anyone have any experience of using this medication? It seems like an unusual choice of medication to me!