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Twitching spasms all over neuropathy/meds

Posted by janek1273 @janek1273, Jun 5, 2023

Hello all. I'm 49 and have Failed Back Surgery in 2012, so I'm still in pain and neuropathic pain in my feet. I've been on pregabalin, oxycontin, nortriptiline for over 10 years now, and slowly trying to reduce any of them. I suspect that's what causing the twitching of various limbs all over - small ones every hour at least, bigger ones each day or so - these bigger ones in my leg, make it feel like one of my legs (usually the right one) has vanished and I'm about to fall over. All these are very brief, and if they move a limb it's only by a few centimetres, sometimes it's just the muscle that moves and can't be seen. I also have a very cold painful back of my right hand a few days a week. I seem to drop a lot of things recently, and all these are NEW symptoms on top of the boring, usual back and buttock ache, hideous neuropathy on my foot sole. My voice seems to be progressively more gravelly each month, and sometimes my speech kind slurs or goes offline a second or so. I thought my GP had referred me before Christmas,but just found out today she's forgotton to do that. I'm in the UK, the NHS is dying on its feet. Any ideas esp if these new symptoms are maybe linked to the old back surgery?? Thanks in advance, I know this place has all the brains.

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tonyde | @tonyde | Jun 5, 2023

Talk to you doctor about trying vitamin B12 injections, not B12 vitamin pills. Vitamin B12 helps heal muscles and nerves, it's not a cure but one injection every week or two has given me enough relief to reduce my gabapentin to almost zero. An excess of vitamin B12 has no negative effects on your body, it can only help. I read an article that the Mayo Clinic is currently doing research on the impact B12 has on neuropathy, don't know if that article is correct, you could contact the Mayo Clinic to learn more. Please let me know if it helps, if it does we can pass it along to help other people.

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John, Volunteer Mentor | @johnbishop | Jun 5, 2023

Hello @janek1273, So sorry to hear of your failed back surgery and continuation of growing pain and neuropathy symptoms. I know it must be terribly difficult dealing with this since 2012 and still being young at 49. I'm guessing that the new symptoms could be related to the old back surgery but I don't have a medical background or training. I did find some information that seems to describe what's happening.

--- Failed Back Surgery Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK539777/

@jenniferhunter started a discussion which might be helpful if you can find a therapist in the UK.
--- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You mentioned your GP forgot to give you a referral, did they setup a referral since you asked again?

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1 reply
janek1273 | @janek1273 | Jun 5, 2023
In reply to @tonyde "Talk to you doctor about trying vitamin B12 injections, not B12 vitamin pills. Vitamin B12 helps..." + (show)
@tonyde

Talk to you doctor about trying vitamin B12 injections, not B12 vitamin pills. Vitamin B12 helps heal muscles and nerves, it's not a cure but one injection every week or two has given me enough relief to reduce my gabapentin to almost zero. An excess of vitamin B12 has no negative effects on your body, it can only help. I read an article that the Mayo Clinic is currently doing research on the impact B12 has on neuropathy, don't know if that article is correct, you could contact the Mayo Clinic to learn more. Please let me know if it helps, if it does we can pass it along to help other people.

Jump to this post

Thanks for the pointer - I did have a expensive but helpful vitamin cocktail of B vitamins, ALA, Magnesium which I felt was helpful, as things have been ultra bad with the foot neuropathy before now. I still take quite a high dose of the bioavailable version of B12, magnesium, Vit D & B9, I'm not sure if that's the same as the injected b12 version? I also aware I overdid the Vitamin B6 and now cannot take B6 AT ALL - as the excess toxicity symptoms are..... neuropathy , would you believe it. That took some time of learning before I stopped and pulled back from taking so many. Plus, costs. BUT I do believe a cocktail exists of supplement that DO help neuropathy, though clearly I don't have it - lol 😂.

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janek1273 | @janek1273 | Jun 5, 2023
In reply to @johnbishop "Hello @janek1273, So sorry to hear of your failed back surgery and continuation of growing pain..." + (show)
@johnbishop

Hello @janek1273, So sorry to hear of your failed back surgery and continuation of growing pain and neuropathy symptoms. I know it must be terribly difficult dealing with this since 2012 and still being young at 49. I'm guessing that the new symptoms could be related to the old back surgery but I don't have a medical background or training. I did find some information that seems to describe what's happening.

--- Failed Back Surgery Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK539777/

@jenniferhunter started a discussion which might be helpful if you can find a therapist in the UK.
--- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You mentioned your GP forgot to give you a referral, did they setup a referral since you asked again?

Jump to this post

Thanks @johnbishop and @jenniferhunter for your input - I've been seeing more and more of myofascial release technique for a variety of issues, makes a lot of sense. I'll maybe see if there's an affordable type of therapist who does that work. Yes, my GP was very apologetic and has referred me today - so I'll sit tight for another 6 months or possibly longer, and hope something comes through. I'm attempting to drop some meds as I'm sure that will be the first thing they talk about should I finally get to a neurologist. Who knows? I guess if I can still get my butt out the door and drive , and shuffle about doing bits and bobs then I'm winning. Thanks for your help, I know neuropathy comes free with many random conditions, and is hellish to treat.

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