Peripheral Neuropathy: Hi, I am new to this... - Action on Pain

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Peripheral Neuropathy


Hi, I am new to this forum, and am a young elderly lady!! Over the last 5 years have been under 3 Neurologists and the last year or so under my local pain clinic. Finally had the more or less diagnosis of Perioheral Neuropathy ( non diabetic- no obvious cause). In January had a Bilateral spinal nerve block, which did absolutely NOTHING to reduce the pain in lower legs and feet. Now waiting for trial for Spinal Cord Stimulation, which is a bit like having a pacemaker implanted in top of buttock, with leads placed along the top of the spinal cord under the vertebrae. Have been down every other avenue of help- acupuncture, tens, physio, numerous medications, some of which I could not tolerate, and I am now fearful that this might be my last option. The pain is getting worse . It would be nice to hear of other people's experience with this dreadful condition

10 Replies

I have diabetic neuropathy without diabetes!? I have Raynauds syndrome (cold toes fingers and my nose is now blue-black). I take a ton of pain meds but I'm cut off of my Dr in 3 months due to Medicaid changes. Mine may stem from a califiying pancreas? Cirrhosis due to HepC and the 6 rounds of treatments I had? Idk? Dr's don't know. Neurologists are no help to me. I am 54 and dying and no Dr can tell me why?! Keep me updated how you do. Lyrica worked great but the side effects were awful. Know you're not alone.

Buci in reply to TaraRae

Oh your poor poor thing!! What a dreadful plight you are in. I can't think how you can have been treated so callously. I can only agree on one thing, and that is that Neurologists are absolutely useless, and don't seem to really care about their patients much. Makes me realise my problems are nothing. Am thinking of you and desperately hope you are wrong in your outlook. You are not alone either !!

I have seen a lady get temporary relief eg 3 hours by injecting herself with Nubian an opiate . She was really pleased that at least some of the time she could be pain free. Sorry I don’t know what happened to her in the long term. It was prescribed by an American pain specialist. Good Luck

MrsM7 in reply to MrsM7

Sorry spelling was autocorrected. Nubain

Buci in reply to MrsM7

Thanks, but I don't think I have any chance in UK of getting that !!

MrsM7 in reply to Buci

This was in the UK. Her GP was initially unhappy to prescribe but once he saw how well it worked he was happy to prescribe. Why not it’s a painkiller and you are in pain.

I am 69 and have had Peripheral Neuropathy (idiopathic) at first sensory but now some autonomic problems too. I was diagnosed in 2013 but had it for at least 10 years before that - no one would diagnose me and I was pretty sure what I had. I had to pay for a private diagnostic visit to a neurologist. Once I was diagnosed at least the doctors took me seriously. However all I managed to get treated with was amitriptyline and capsicum cream. they tried codeine, co-codamol, tramadol - could not tolerate any of these. In the end after an a & e admission when they saw the results of codeine and morphine on me the co nsultant prescribed me Butrans patch and so far this seems to be working in that my pain level is considerably more tolerable. I certainly hope I dont have to go down the spinal stimulation route

Buci in reply to Bealings48

Thanks for your input! Very interesting, as I found none of the neurologists etc seen over the last few years would actually diagnose either! The consultant I saw a few weeks ago who was referring me for the SCS, only told me the very basics - in about 5 minutes. Since then I have researched it extensively on the net- mainly on NHS sites and blogs etc, and have found it it much more invasive than I was told, with very very many negative and really worrying outcomes and experiences. This has made me think that I probably will not consider going down this route. Today I am expecting a phone call from the specialist nurse, to answer a lot of my questions regarding this procedure. I am so sorry to hear of the time it took for you to be finally diagnosed, and very glad you get some relief from the patches. I shall go to my GP to ask about him about the patches. My Perioheral neuropathy is in my legs and feet, very much worse at night. Where do you put the patches, and how do they work, and have you experienced any bad side effects? Nice to have a contact with similar experiences. Take care!

Hi I’ve just been given capsicum cream for my neuropathy in my neck and am wondering did it help you at all as I’ve read you have to use it for 4 weeks before it helps with nerve pain

I have neuropathy caused by something wrong in my knee.

It’s been diagnosed as “diabetic neuropathy “, which is impossible since I’ve had it since ‘99, & wasn’t Dx’ed as a diabetic till around 2009.

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