Treatment ideas for chronic nerve pain........ tried loads!!

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Ok so long story short.....2 and a half years ago a physio trapped a nerve in the right sight of my neck during mechanical neck traction! The trapped nerve sorted itself over a few weeks nut left me with excruciating constant burning in right hand/fingers/forearm. This also began in my left arm and is now as bad in my left. Then after a few months the same pain started in my feet but was sporadic - this is now permament but in varying intensities over the day.

So my symptoms are:

Burning, throbbing, shooting pains in hands and feet - varying intensities over the day but always there.

Allodynia and hyperalergisa - a breeze on my arm, or dogs tail touching it can send me through the roof - this isn't constant tho.

Burning etc is in both the palm and dorsal of hands (used to only be palm) and the same with feet so when really bad I am unable to rest hands so hold them out so as to not touch anything. Unable to have blankets rest on feet or feet rest of sofa etc when really bad.

At night I often sleep with arms hanging off the side of the bed and feet hanging off of the bottom of bed!

Things I have tried......

Currently on 600mg of carbamazepine a day with only a little improvement in hands but feet have worsened while on it

Lyrica

Gabapentin

Duloxetine

Amytriptaline

Lidocaine patches

Tramadol

Epidural injection thingy in neck

Tens

De-sensitization

Pacing - I have adapted everything so that I am able to do some things even tho this still causes pain

Probably more but I can't remember right now haha

I am at my wits end, I have lost my job due to not being able to fulfil the role suitably (HLTA in a primary school so lots of teaching 5/6/7 year olds) due to the constant pain, lack of concentration, side effects of meds. I feel my world is shrinking, everything I do causes the pain to get worse do I sleep my days away - when I finally get to sleep. My kids do more house work than I do so suffer with severe guilt!

At My latest hand physio appointment she sat there and said"oh your complex, let me get my colleague!" The colleague said exactly the same and that she has no idea what to suggest! Thanks 😂

Specialist pain nurse has said that we have more or less exhausted medication ideas apart from morphine etc but as I'm only 34 and have 2 children we both agree that morphine isn't really the way forward, especially when I get drowsy with many medications.

The rheumatologist has said there is no more that he can do but has sent a letter with a couple of recommendations (denervation and spinal cord stimulator) to one of the local pain consultants........ that's great! Thank you! But said pain consultant is currently only working privately at the moment due to a conflict in views with the new pain service in the area!! Sho i have made a private appointment to see him £200!! To get his opinion as the rheumatologist said that he is the best one (which he is). After moaning to ACE (our pain management system) i have also just been given an appointment with their pain consultant..........

But what else can they offer? What else can I ask them to consider?

Sorry for the long post - I have probably forgotten lots too!!

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6 Replies

  • Posted

    Noo need to apologize, I would get off the Lyrica and Duloxetine as they can tend to make the pain worse, at least they did for me.. The Gabapentin has not done much either. The doctors give out anti depressants because they say the pain will not be as bad and it may go away but the real truth is that they get kick backs from those drug companies. I am taking Baclofen and i am taking nortriptylyne at bed and that seems to help me sleep. The doctors have not put me on any other drugs yet and I refuse to take any other crappy anti depressants that they want to give me. I also have my medical marijuana card just in case i decide to use that.

    I haven't gigen you much help but i hope you work things out.

    Ken

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  • Posted

    I got relief from gabapentine 

    Had to keep upping the dose until I got relief

    Started at 300mg a day 

    Now up to 1000 mg a day spread throughout the day

    That has helped pins and needles and numbness in both feet.

    Also I take 3 Celebrex a day spread thru out the day for pain

    I hope this helps 

    I hope you get your life back soon!!

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  • Posted

    After a nerve conduction test I was told I have Small Fibre Neuropathy and the sensations I have are much as you describe. I have 200mg of Tramulief which is a long lasting Tramadol plus 2700mg of Gabapentin. These help but I remain in pain some days more than others. I am 69 so coping during the day is easier for me. I see a good Neurologist but I suspect there is little more to offer. Sorry I can’t be more helpful
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  • Posted

    I'm in the same shape as you are !I've taken every kind of medicines, tried everything !!

    I ran across an article named " needling " !

    It's a form of acupuncture but the needles go deeper into your affected muscles so your body will take over

    I haven't tried it yet, but I'm going to soon !

    Most insurances pay for it including Medicare !

    Good luck !

     

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  • Posted

    I have tried Lyrica

    Gabapentin

    Duloxetine

    Amytriptaline

    these drugs also but they didn't help or made the pain worse. Don't fall for the doctors saying anti depressants will make the pain go away because they don't. As a matter of fact they made things worse for me. They pass those anti depressants out like candy, I am not sure why but i was told by one doctor that they are given bonuses for doing that. I got a medical marijuana card myself and am waiting to use it rather than be all drugged up on pills, I can thank GILEAD, the company that makes Harvoni for  the side affect that gave me this incurable disease.

    Good luck with the battle!

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  • Posted

    Well, for some reason my last two posts are being moderated because they obviously don't like what i have to say about doctors and the drug companies.. 

    Get well soon!

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