Saying hello again!

katybarstool Member Posts: 22
edited 13. Sep 2017, 02:36 in Say Hello Archive

I'm Kathy and have been here on and off for around 10 years, I think. I've not been around during the recent 3 or 4 years, for a variety of reasons, but now need to come back, get some support, and meet new and old friends.

My main condition is Sjogren's Syndrome, but I also have Raynaud's, OA in various body parts and lung problems, which I'm happy to say are stable at the moment.

Over to my most recent problems: I've had a lot of pain in my left shoulder, on and off for 3 years. I've also had 'sciatica' for the last year, again waxing and waning. However, the last bout of sciatica is the worst so far, and after an MRI a few weeks ago, I've been told I have multi-level degenerative changes in my lumbar and sacral spine without any 'significant compression to the nerves'.

That's causing me a lot of confusion as the pain in the back of my hip, needles and pins from knee down to toes, and thigh and calf pain is driving me nuts. If I've been sitting down for even a short time, I'm in agony when I stand from the burning pain, and after a few yards the needles and pins start. The report came from my rheumatologist in a clinic letter. I'm not due to see him ,til mid-October. However, I'm seeing my GP on Tuesday, and want to have a sensible conversation about dealing with my symptoms and what 'significant nerve compression is'.

By the way, I'm waiting for a steroid injection in my shoulder, and carpal tunnel surgery in both wrists.

Any words of wisdom please?



  • stickywicket
    stickywicket Member Posts: 26,173
    edited 30. Nov -1, 00:00
    Welcome back :D but I'm afraid I have no words of wisdom other than, as this is so important, I'd suggest you take someone with you to your appointment. People are often anxious to ask the 'right' questions but remembering the answers is equally important :wink: Please let us know how you get on.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • katybarstool
    katybarstool Member Posts: 22
    edited 30. Nov -1, 00:00
    Hi Sticky, thank you for getting back to me. I replied a few days ago, but it must have disappeared into the ether.

    My GP was very understanding. She has changed my gabapentin to Pregabalin, to see if that helps. She's also referred me for some sort of epidural injection. That's done by an anaesthetist, rather the the rheumie who has normally done my steroid injections. I'm crossing my fingers that it won't take too long.

  • Poppy354
    Poppy354 Member Posts: 7
    edited 30. Nov -1, 00:00
    Hi Kathy
    You may have already checked this out and it may be a bit simplistic, however have you asked your medics to check for a bursitis? I have scoliosis and suffered pain much like you described. It was just by chance one of my GP's thought to feel around the area I felt was most painful and it was a very large bursitis, one injection later and huge relief. I get bilateral sciatica often but now know to check if there is a bursitis, it's easily missed especially if you have more than one area of pain or are trying not to put weight on sore bits like me. I have had more than one in each hip...that's what I've found anyway might be wort a try.
  • frogmorton
    frogmorton Member Posts: 26,574
    edited 30. Nov -1, 00:00
    Welcome back Kathy!!

    Sorry you are back again :( although it's always nice to see you of course. :wink:

    Fingers crossed the GP's med tweak and the epidural will help you :)


    Toni xx

    Toni xxx
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