Peripheral neuropathy

Has anybody received treatment for peripheral neuropathy and what were the results. My feet are giving me terrible jip, when I get up in the mornings I feel like I am wearing deep sea diving boots but with less sensitivity :blush: The rest of the time they feel like they are on fire or I am walking on a bed of nails :blush: Any suggestions on how I may retake possession of my feet again would be warmly welcomed.
Best wishes
Alfie

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Alfie, what you describe sounds horrible and debilitating, what do your medical team say?

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Hi Erica, peripheral neuropathy is quite common in people who have had extensive chemo and/or kidney dialysis like me. The medical remedies seem to cause more side effects than they are worth, I was trying to find out if anyone had any non pharmaceutical suggestions. I try to avoid taking medication if I can. You have get the cost benefit analysis right. The symptoms sound dramatic but it’s more annoying than completely debilitating, so don’t be alarmed.
Best wishes Alfie

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Hi Alfie, I have peripheral neuropathy; at its worst I had sharp pains and couldn’t move my toes, but now it’s much milder and just a tingle that I don’t notice too much. That’s over the course of 3 years since first getting it and it’s now about 2 years since I finished intensive chemo, so time does seem to help. I used medication called gabapentin when it was really bad, whilst I tolerated it quite well, like you, I’m not keen on medication for too long.
It might be worth checking with your medical team, but I read somewhere that vitamin B12 can help, so I always look for that in my diet.
I was also told to try movement. There are some exercises I was given and I feel like they did help, although that could just be the time factor! The first was to fill a bowl full of marbles and sitting on a chair with the bowl on the floor in front of you, pick up some marbles using your toes, hold them for a few seconds and then release back into the bowl. Another was to sit on a chair and put a square of kitchen paper on the floor and use your toes to move it towards you and push it away from you, along the floor.
Finally, something that was suggested, but didn’t work for me, was a TENS machine. I think you can borrow them from some hospitals, but I got one from Amazon quite reasonably priced (Not that cost effective in the end because I gave it away!). Could be worth a chat or investigating.
Hope this makes sense and is some help :slight_smile:
Best wishes,
Emma

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Hi Emma, thank you so much for the great advice, i will give it all a go.
I see you have been in remission since 2015 from your leukemia that is absolutely fantastic, I have primary plasma cell leukemia, and no I’d never heard of it either :blush: Finished 6 months of chemo 2 months ago and am in plateau, its marvellous not having to take any pills, hence the desire for alternative solutions. I hope you are enjoying life and I wish you many many years of remission to come .
Best wishes
Alfie

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Thanks Alfie, there are so many names - it’s very confusing! I’m pretty sure it will be nasty though :thinking: Great to hear that you don’t need to take any more pills - I remember that feeling was so good and I didn’t believethe day would ever come - I hope it continues for you too.
Best wishes, Emma

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Dear Alfie
As a fellow sufferer of peripheral neuropathy, you have my heartfelt sympathy. Just over a year ago my “normal” CLL mutated, and in doing so became resistant to the Superdrug that until that point had been 100% effective. Within a couple of weeks I went from tingling, to pain, to disability, with almost no use of hands and feet. A new Superdrug fixed the CLL but by then the damage had been done to my peripheral nervous system, which subject to a further confirmation from my neurologist in a couple of weeks is probably permanent and irreversible. It’s not that bad, I can now do most things that you are supposed to be able to do with hands and feet but the sensations you describe are ever present. I too was told that gabapentin was effective with nerve pain, but when I looked into it it appeared that it was a fairly blunt weapon used to treat epilepsy, and I decided to go drug-free and put up with it.
This is by no means medical advice, but a discovery that I’ve made simply by observation. During the course of my work as an engineering consultant I travel quite a lot, and in the early stages of this neuropathy needed quite a bit of assistance, wheelchairs at airports and so on. Used to wake up in the morning with pain and electric shocks in my feet, which felt as though they had been immersed in an ice bucket for far too long. When I felt able, I got rid of walking frames, sticks and wheelchairs and simply took my time. A lot of this relates to travelling and walking through airports, where the distances can be quite long. I would return from a two-day trip having walked miles – albeit slowly – and, guess what?, My feet felt a whole lot better. I feel the opposite now when I spend an inactive week at home and although the discomfort level is much lower than it was before, it’s still there. The biggest challenge is still walking downstairs, but with a suitable handrail I no longer have to stop and start on every individual step.
So I think the old expression “use it or lose it” is probably valid, it certainly something that I found with my hands, where with the exception of doing up small shirt buttons and playing the piano I can do most things. Using a computer keyboard is possible although slow, which is why the majority of my correspondence (including this message) is achieved using voice recognition software.
I would therefore encourage you to walk as much as you feel able to, I’m sure you’ll see an improvement. A Swiss friend of mine with chemo related neuropathy recommended some very high-tech shoes https://www.kybun.com/ – they certainly look interesting if you have £300 to spend on footwear!

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Dear mike, since I stopped using velcade I have seen a great improvement in the state of my feet. This drug has somewhat of reputation for peripheral neuropathy and I agree that when I walked the pain wasn’t there it would only hit me when I would stop walking and in the morning, but on balance it’s better to persist with light exercise as like you I suspect it would be worse if you didn’t keep going. I know some people who had to change therapy, we are all so unique it’s important not to struggle on without discussing things with your doctors as they may well be an alternative .
Best wishes alfie

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