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Peripheral neuropathy self help discovered.
Got PN about 2 years ago having just completed the Camino Frances all 800K and 32 walking, so I am fit even at 80 when I completed it.,diagnosed by the neuro surgeon after the GP's x2 failed diagnosis. ..I am NOT diabetic (tested and normal cholesterol) I am just approaching 82 and use my gym every day either spin classes(cardio) or the magic cold water plunge pool which since its tap water its about 7 or 8C degrees at the moment. BUT!!! ..first the .sauna then plunge pool daily relieves pain dramatically for most of the day...it doesnt cure as we know but I do not need to take co-codamal except in the night...As the surgeon said I am healthy but decades of copious amounts of wine is the culprit...I am no typist but I also self medicated for over year with a daily 5mg of Tadalafil along with 1 x 60mg duloxitin...here is ther problem, there has defiantly an improvement from the original pain,but do NOT know if the Tadalafil or Duloxetin is helping and too scared to stop in case it comes back...not going tp type anymore but if anyone knows anything to add to my experiment...please let me know .Martin Cripps . Bath . UK
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Hello Martin @scuba1, Welcome to Connect. I'm glad that you found Connect. I also have neuropathy but only numbness and some tingling with no real pain. Just want to congratulate you on being your own advocate and learning what provides relief for some of the nasty symptoms. I'm 82 also but couldn't even imagine trying to do the full Camino Frances Route. That is quite an accomplishment, especially when neuropathy is tagging along with you. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
The Neuropathy Support Group here on Connect has many different discussions that you might find helpful. Here's a complete list - https://connect.mayoclinic.org/group/neuropathy/.
In case you haven't seen these sites, they have a lot of great information for learning more about neuropathy.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/
-- FPN YouTube Channel with helpful videos: https://www.youtube.com/@foundationforperipheralneu4122
--Neuropathy Commons: https://neuropathycommons.org/
Has your neuropathy affected your balance or is it mainly pain symptoms you have?
@johnbishop
Good Morning John..
Thanks for the info and thumbs up..., but like my wine, so have to put up with the twinge...the PN started about 4 months after the Camino. I self diagnosed it and 2 drs failedto...then one of my sons just booked me into the Spire clinic in bath to see a neurosurgeon and sure enough I was right.
I have a daily routine of either spin class or sauna and plunge pool which I have been doing for years., and I have been a gym bunny since god was a boy which in later life has paid dividends and at 81 I am not giving up drinking but have cut back bit.
Why take Tadalafil every day even if you aren't getting layed? ...simple answer is induced diabetes in mice has had remarkable recovery studies using Tadalafil and since erectile dysfunction is all about lack of blood, the ED allows dilation of the arteries especially around the sciatic nerve allowing higher oxygen flow over the damages neurons., at least thats my take on it, its also totaly harmless at this dosage..add to that the cold water plunge pool that numbs the legs ., and right now its bloody freezing I can dangle my legs in for about 15 minutes but cant submerse as its just too cold, and that gives me a good head start for the rest of the day.....I am allowed up to 8 co-codamol tabs a day but rarely take more than 2 and thats at night when the brain deicides to stop producing endorphins then the bad boy try's to kick in.... Conclusion:- Its working but requires dedication to a routine that I have been doing for years even before PN , and not one for taking the medical proffesion at face value...hope this helps . Regards Martin C
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1 Reaction@scuba1 I forgot to add that my monthly subscription to the council sports centre is £27! which includes all classes , pool, sauna gym and the rare remaining cold water plunge pool, which would of been ripped out by the council if there hadnt been such a protest...used by so many folk for different reasons, mental health included...its not a panacea but its drug free and appears to work.
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1 Reaction@johnbishop Hi John, you sound exactly like me, I thought I was reading about my journey with neuropathy. I am also 82, very little pain, just tingling, burning, which I believe Gabapentin helps with along with R Alpha lipoic acid. My chief complaint is BALANCE!! I have been active all of my life, still am gym, swim, water aerobics, which help alot. The balace is bad. Only use a walking stick when I know I will be in crowds, it is amazing how people react to canes, they are thoughtful, helpful and caring. I have heard that Walkasins do work. I know a man ( a Vet) who has him and they have corrected his balance. They are $10,000 sooooo unavailable to me. I am on their list, when and if medicare approves them. What is the answer to your balance problems? Oh shoes do help, Hoka Bondi 8 or the Ahari. Good shoes with arch and wide toe box a must. Oh well that is it for now, best wishes and Merry Christmas to all with this disease..
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2 ReactionsHello from a young 76 year old female. My balance is off some but it’s the CONSTANT movement in my feet and legs that is my main complaint. I have no pain. Tingling only when I think about not allowing my feet/legs to move. Doctors still are treating for RLS. My feet/Legs do not move when my eyes are closed or when I am asleep. Currently building up my dosage on Pregabalin. ANY suggestions or information?
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1 Reaction@allegheny Mainly what's helped with my balance issues are shoes that aren't too cushy. The more cushion, the harder it is for me to walk. I really like a few different barefoot shoes I have if I don't have to walk very far. Then the jarring when walking becomes a problem with my feet. I don't think Walkasins would work for me because I have lymphedema and have to wear knee high compression socks and the sensors probably wouldn't work through the socks.
Hi @claricems, There are quite a few discussions on restless leg syndrome (RLS) if you want to scan through them to learn what other members have shared - https://connect.mayoclinic.org/search/discussions/.
Have you seen the Restless Leg Syndrome Foundation website? - https://www.rls.org/
@johnbishop yes the doctors keep talking to me about RLS but I keep thinking that it’s something else. Neuropathy doesn’t fit either. I never have any pain. AND all symptoms go away when I close my eyes or go to sleep.
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1 Reaction@johnbishop
Sorry forgot to answer...Yes on occasions, but that I think is because the reflex in my right ankle is defunked so trip rather than full especially stairs , but rectified by being more aware of the potential danger....
As to anyone wearing good shoes., I am fortunate that always had good shoes and agree entirely , but you can improve ordinary shoes but getting those cheap couple of dollars raised arch insoles from Ebay , AliExpress , Temu and just about any on-line far eastern site ., a couple of quid each , and chuck in washing machine too... I have them in ALL my shoes way before I had PN , and they transform how you walk
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1 Reaction@claricems, Here is some information on RLS from the NIH if you haven't already seen it. From what I've read you can have RLS symptoms only during the day but not sure how common it is. There are also resources listed at the bottom of the article.
-- Restless Legs Syndrome: https://www.ninds.nih.gov/health-information/disorders/restless-legs-syndrome