Why don't I have a clear diagnosis?

JohnLSA
JohnLSA Member Posts: 2
edited 28. Nov 2023, 14:10 in Living with arthritis

Hi all. I’ve suffered for 2 ½ years now and after seeing my GP and 2 rheumatologists, I still haven’t got a diagnosis and I wondered if anyone else has had a similar experience. They are monitoring my progress, to see if there are any significant changes to help identify the mystery. I will be 71 in a few weeks and I’m physically fit apart from this issue that’s ruining my life. I take 1800mg of gabapentin each day, but it doesn’t stop the stiffness and aches, so I top up with ibuprofen (which the doctors won’t prescribe). I also walk every day and do some yoga and stretching exercises. I tried swimming, which was OK while in the water, but made me feel really ill and extremely fatigued, stiff and achy straight afterwards, to the extent that I really don’t want to try it again.

The problem started off with me feeling light headed and unwell on walks with my wife, which progressed to needing to sit down for a few minutes due to lower back ache. Next I got severe head, neck and shoulder aches, extreme fatigue, nausea and various strange symptoms. Following that I found that every time I slept I seized up and was stiff and achy from my feet to my fingers in the early part of the day, but always fine in the evening. I still get that, but the symptoms can also come and go throughout the day, for various lengths of time, although some days I get virtually nothing and start to think it’s left me. I’ve had blood tests, X-Rays, an MRI scan, a Dexa scan and a bone scan and despite the symptoms being close to polymyalgia, this has been discounted as steroids had no effect. The tests have found however, that I have general osteoporosis, degenerative spondylosis and osteoarthritis in my neck (which impinges slightly on the nerves), wrist, hips and SI joints. I realise that my bones are deteriorating and the hip issue is probably causing the pains in my lower back and groin area, but I don’t understand why it is the muscles all over my body that are seizing up as well. Sorry for the very long post, but any observations would be gratefully received.

Comments

  • stickywicket
    stickywicket Member Posts: 27,697

    Your docs are clearly doing all they can to get a clear picture. I have RA and OA but some of your symptoms are outside my experience. One thing - the reason why your GP won't prescribe ibuprofen is because it, and other NSAIDS, can be dangerous in those of us over 60. Actually, they damaged my stomach when I was in my 20s. If you're taking it you should àlso have a afomach protecting med. Maybe it's what's causing your nausea?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JohnLSA
    JohnLSA Member Posts: 2

    Thanks for the response stickywicket. I'm taking omeprazole each day for issues after my gallbladder removal, so hopefully that also gives my stomach some protection against the ibuprofen.