Neuropathic pain in the form of a burning or cold feeling on the skin surface

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I have an MND illness called Spino Cerebellar Ataxia and one of the side effects is an acute neuropathic pain/cold feeling on the skin surface that is driving me mad! I presently use Lyrica and cilift but it is does not relieve any  discomfort any more!
The only real relief is getting into a cold bath and that is only temporarily .
Is there anyone with any suggestions that might help?

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  • Posted

    Sorry it seems that part of the message was deleted!

    I have a neuropathic pain /cold sensation on the skin surface that causes huge discomfort! I have been using Lyrica and Cilift but it does not help any more!@

    Does any one have suggestions?

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    • Posted

      Dear andre51, I've had neuropathic pain in my feet and toes for over 7 years now ! I've tried everything and I mean everything , even surgery !!

      I went thru a trial period for a nerve stimulator and it helped lessen my pain 50% !!

      So this week, I'm going to have the nerve stimulator implanted permanently in me !

      I've consider this last resort for getting any pain relief !

      Good luck to you !

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  • Posted

    Hey Andre and gm too, Dont think I can help much, but can let you know what i have tried, and maybe one may help you, and am still looking for some relief for me. The docs here think I have some type of neuro pathic pain associated with hernia mesh repair back in 2015, a year after my cystectomy. The pain is burning, stinging, like a hot poker branding me, sitting, driving and laying on my back makes it worse. The pain is right next to my stoma , and about 2-3 inches from it too. I think it may be the stoma rather then the mesh, but nobody knows for sure whats causing it. I had taken most of the various anti depressants used for nerve pain and some did help very short term though. My oncologist suggested cbd oil , but no help either. Have had cortisone injections, radio frequency ablation, spinal cord stimulation, sacral plexus lidocaine/ steroid procedure all to no avail. Topically, tried lidocaine cream, lido patch, cortisone cream, ice packs, pentrex cream , dmso liquid. Only thing that helps sometimes is migraine extra strength aspirin tabs, crushed up to form a paste and spread over the area and just let it stay there as long as i can, and it helps for short time, and was my wifes idea. And speaking of cold baths, in the summer, going in the cold ocean helps too. F or me the temp has to be between 68-74. Hope one of my things may give you some relief and good luck, howard

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  • Posted

    Maybe try a TENS Machine which may give you temporary relief. Other than that there is little else because the is no cure for neuropathy. My neuropathic pain flares up with cold, damp weather, but completely clears up when it is hot. I refused low dose anti depressants because they are too toxic and take too long to work.

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  • Posted

    Have tried tens unit too, and now looking into needling procedure, and here in NJ , only accupunturists can do it, physical therapists trying to the law changed again so they can, so then most insurances would cover it.

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  • Posted

    Hi Andre 51.

    I have suffered neuropathic pain for years. went through all the pain medication and the anti depressants. All to no avail. I was given gabapentin 600mg. 2 x 3 a day. they did actually help but i couldn't cope with horrific side effects. They made me sleep for hours day and night. I walked round like a zombie losing my balance and bumping into things. I weaned myself off them eventually. the side effects still continued for a while.

    A few days ago I read an article about a school teacher who had similar problems.

    Leg pain really sharp burning or icy cold pins and needles and numbness. She also weaned herself off gabapentin. She said she had started taking

    ALPHA LINOIC ACID and found almost instant relief. I looked it up and found them on Amazon. I sent for them straight away and they arrived on Friday. this is only my third day of taking them but they've given me so much relief already. I take 1 3 times a day. they are 600mg per capsule. I know they are not a cure but the relief for now suits me fine. I wonder why G.Ps never prescribe anything as helpful. It's as though they don't really want to ease your pain.

    Hope this helps.

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    • Posted

      MY neuropathy has weakened the strength in both my arms and physical exertion sets it off. I have read that alpha lipoic acid can be found in various foods such as Brussels Sprouts, tomatoes and spinach, all of which I eat. I have also read that some people get heartburn from taking it in the tablet form and can get rashes. I get a lot of heartburn already, so I am not sure about the oral version of this supplement.. There is also a cream to put directly onto the affected area; how strong these creams are I don't know. Over the counter remedies are often weaker.

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    • Posted

      Hi Pippa.

      I also eat the foods said to contain. ALA but i think maybe I don't eat enough. the capsules I take are 600mg and I take 3 per day.

      I certainly agree with you about the heartburn. I also take medication for it, and yesterday it was really bad after taking a capsule. Now I make sure I have a large glass of water afterwards and have been fine. I haven't had a rash as yet. There are also lidoderm patches you can buy which you apply directly to the affected area. I haven't heard much about these . Actually I'm not sure if you can buy them or if they're only on prescription.

      I know that taking ALA Isn't a miracle cure. I wish it was. I know there isn't a cure for it sadly. The last few weeks and especially over the festive season my pain has been unbearable. I didn't even have a glass of sherry on xmas day as i was taking painkillers. 😥

      wishing you all the best. )]

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    • Posted

      So many of these things are hit and miss. Drugs give me side effects and supplements do nothing for me. There is an ALA cream but how strong it is remains to be seen. I have tried a few creams and painkiller patches with no success. Nothing cures the pain even slightly so I just have to accept it.

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