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Desperately seeking nerve pain & periformis syndrome sufferers

Posted , 3 users are following.

joanna27473
joanna27473

Hi folks 

?I'm desperate to hear from anyone that is experiencing nerve pain , but not from diabetes . 

?The situation is that I have experienced a range of symptoms over the last 3 months. These have ranged from inflammation across the sacral area to then (2 weeks later) what I call 'normal' sciatic symptoms , then (1 month later)  shooting sciatic pain from sitting to standing, which progressed to not being able to sit down due to excruciating sciatic pain. This is when I had to stop driving and come out of work. I am a 48 year old student nurse in her final 3 moths of training so this has been disrupted and put on hold.   The last 4 weeks it has worsened again, with the development of severe and intense pins and needles which are not painful, just very distracting. Plus horrific neuropathic pain all over my leg, present about 60- 70% of the time. This is so bad at times that I cannot put my foot to the floor or touch my skin/ have fabric against, mainly during the night .  This is constant thing at night for the last 3-4 weeks , were I am having to get up 3-4 times during the night and try to walk about until if lessens a bit . I then take more medication, (which I hate doing) this makes ne drowsy enough to go to sleep again. However I have only been able to lay in certain positions in bed and not been able to move over due tot eh intense muscle pain..  During all this time I have been to my GP numerous time , who referred me to a physio , which I had to wait 9 weeks for!!   SO needing to seek relief sooner, I was under the care of a Chiropractic college, who mentioned something about sacroiliac joint , so for weeks I was certain that I had something wrong with this.  My GP did a test for sacro-illiitis and this came back negative. The chiros were not helping and it was during the few weeks there that the condition worsened. So.. I sought out a private physio who was recommended to me and he thought is was a re-occurrence of my L4, L5 S1 discs that were herniated prior to having my hips replaced 3 & 4 years ago. SO treated that area an there was minor improvements for a day or two.  In the mean time my NHS physio appointment came round and after assessment he thought I had piriformis syndrome, which again all my symptoms fit. He sent me off with sheet of exercises of which prior to this I would have been able to do as I have done a lot of Pilates and yoga in my time. However at first all the exercises were excruciating at first but a few have got easier as the weeks have gone on , but this is over the period when this awful neuropathic pain has developed and I am at my wits end with it. I'm taking 50-60mg Amitriptyline , 1200mg Gabapentin all at night, as well as Naproxen and Co-dydramol . The awful thing is you cannot relax, as you cant sit down for long periods so as well a sleep disruption , general relaxation is totally disrupted. 

'm sorry this has been a long rambling mail, but has anyone had anything similar. I am pretty knowledgeable and have down a lot of research about Piriformis syndrome , but nothing talks about any neuropathic pain , and most explain it just as a muscle spasm and advise the stretches for that particular muscle which I have been doing.  I had sciatica for many years on and off prior to hip replacements , but absolutely nothing like this.. it would be good to hear from anyone that has experienced similar and what the prognosis is

Yours 

Joanna 

1 like, 3 replies

3 Replies

  • hope4cure
    hope4cure joanna27473

    Posted

    Hi Joanna,

    have you seen a surgeon who specializes in micro surgery to repair herniated disk. Most of the nerve pain is from the sciatic nerve. I had this done and immediately after surgery could tie my shoes walkmbend it was a freeing experience.

    periformis syndrome if PT  is not making a difference then the surgeon has to release the pressure in the area pressing on the sciatic nerve. 

  • amkoffee
    amkoffee joanna27473

    Posted

    It really sounds like you've been through the ringer. When my lower back pain started it was in my piriformis muscle which is deep in the butt cheek. they gave me a trigger point injection in that area and oddly enough the pain in my piriformis muscle stopped and my lower back started hurting. So everyone assumes it was radiating pain and not actually originating in my piriformis muscle. All that happened about 13 years ago and I do have several bulging discs and a little bit of impingement but I've had all kinds of injections and I have not got any relief from them recently (I used to) I would suggest that you might seek out of pain management doctor who could do some epidural injections that might help with your pain.

  • joanna27473
    joanna27473

    Posted

    Thanks both, yes I've just had an MRI and awaiting the results from my GP who will do an urgent referral to Rheumatology where I hope I can get correct treatment . I've had an epidural in the past (4 years ago) that was successful, but I never had the nerve damage pain like this before. Just hoping that will go when I get treatment. It really is the most challenging pain.  Fingers crossed!

    ?Yours Joanna 

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