Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
My neuropathy was induced by chemo, and I do take a B Complex pill daily which has thiamine in it… but I don't believe it has made any difference with the neuropathy. My oncologist also dissuaded me from using NSAIDs which have dangerous effects from long-term use. I, too, cannot take gabapentin, or lyrica, or venlafaxine, etc., so I went to a doctor of Chinese medicine who gave me a pill made of several herbs (mostly plant roots) called Zhi Bai Di Huang Wan. It has been given to menopausal women for 200 years to quiet hot flashes. In my case, it cools off my burning hands, feet and legs… and it has been a life-saver. Finally, I could sleep at night.
Like most things used for nerve damage, it works well for some time, and then requires using a higher dose, and then after a while becomes less effective. So I switched to an endogenous fatty acid called Palmitoylethanolamide (PEA) which is used by European neurologists for neuropathic pain from all pathologies. It, too, worked wonders for a while, and then not so much, at which point I began adding back some Zhi Bai Di Huang Wan when needed, trying to keep one step ahead of the burning nerve pain. It's a constant juggling act, especially since exercise (or even one glass of wine) seems to exacerbate the burning in my feet/legs/hands, and I exercise 4-5 hours/week trying to regain my lost balance and coordination since the chemo. Neither product has side effects (except for some slight bloating from the PEA which I alleviate by taking a Beano with each dose).
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I take all over the counter supplements I found in a closed Facebook group that is now a 501c3 that also has a website — http://solutions2pnpd.com/. Although I don't have pain with my PN it has helped others taper off of pain drugs and they now only have to take the natural stuff to help with pain. It doesn't cure PN since there is no cure but it does help with the pain and I'm hoping it's slowing down the progression of the numbness for my neuropathy as it seems to have stopped the progress in my case.
Hoping we all find something that helps us in 2019!
Hi what do you take pls?
@portsu – the link in my earlier post shows everything. The Join link on the page is for joining the closed Facebook group where you and learn about the supplements and how it's helped other members. They require a lot of reading on your part but it's to your benefit to understand everything and learn how it will help you. I would recommend joining first and then making a decision. Also, I ran the list of supplement by my Mayo doctor who sent it to the pharmacist to get their feedback. The only comment I got back was that they thought the Omega 3 and 6 amounts were high but my research has shown the high amounts are OK for treating specific conditions. I had found a Mayo page that showed amounts of Omega 3 and 6 for treating different conditions in research but the page has since disappeared..not sure why.
This page shows what I take daily and has information on detoxing if you are on pain medications (which I'm not on).
This page is how I order all of the over the counter supplements. Some have liquid form and have better bio-availability than the pill/tablet forms of the same thing.
Hi John, I do apologize for my lack of experience in joining your closed Facebook. I honestly thought I had already joined. I will now go back to your earlier post, read a lot, learn about the supplements, and make a decision. I will learn about the list of supplements that you sent and the importance of omega 3 and 6 and the Mayo doctor that recommends them. I must have been in too big of a hurry to obtain your help. Thank you for your expertise on this subject. It’s always so nice to learn from someone facing the same problem.
Liked by John, Volunteer Mentor
Thank you for your quick response. Now I will begin my homework. Sounds like it is quite lengthily. It may be awhile before I get back to you. I am very encouraged about what I’m going to be reading. Thank you for taking the time to help those of us that are so needy!
Liked by John, Volunteer Mentor, Lisa Lucier
Glad to help @cordy — we are all in this together learning what works and what doesn't…and what works for one doesn't always work for others. I'm hoping you and others have good results also.
Liked by peggyella
I have had peripheral neuropathy for about 20 years in both feet. I have been having symptoms in both hands for a year. I was misdiagnosed with restless leg syndrome… LOL… I didn’t need to move my legs, my feet burned! It felt like ants biting with intermittent sharp bolts of pain like an electrical shock. I would just curl up on the couch or bed and not want to take a step. I can’t understand why previous doctors did not recognize the symptoms as neuropathy immediately because they are classic.
The first time I saw my neurologist, Dr. Ronald Aung-din, in Sarasota, Florida, he diagnosed it by watching me walk down the hallway. He ordered a sural nerve biopsy which proved him correct. They biopsies a three inch piece of artery from the outside of my ankle and top of my foot. It did leave some residual numbness and oversensitivity but it was worth it to finally have a correct diagnosis. I have been on Lamictal, gabapentin or Neurontin since I saw him the first time. They are generally all the same drug and since gabapentin (generic) is just as effective for me and much, much less expensive, that is what I take.
This class of drug is not a “pain” medicine or narcotic. I had tried them and narcotics do not help nerve pain. Gabapentin is actually an anti-seizure drug but has an off-label use to reduce nerve pain.
I tried a TENS unit years ago with no relief, so I had a spinal cord stimulator implanted, but I had to turn the intensity up so high that it made my legs jerk, After a year or two I quit using it and had it surgically removed.
Then my neurologist and pain management doctors agreed that I had been in pain long enough, so they recommended the intrathecal pain pump be implanted in my abdomen, filled with morphine. At least every three months I had to have the pump checked and refilled by my physician via a syringe of morphine into the port in the pump. It was not a comfortable procedure by any means, but it brought me relief as they gradually increased the dose over a period of years.
After a few years, the morphine did not help anymore and they changed it to snail venom. Scientists discovered the snail off the coast of South America. When it stung it’s victim, it paralyzed it so they realized it could have neurological benefits to humans. FDA approved, it relieved my pain for one year until I started having audio hallucinations (I heard music which increased over time until it was unbearable).
At that point they removed the snail venom and replaced it with dilaudid. This also brought relief for some time, but eventually nothing helped. I was in chronic pain from the other neurological diseases (severe spinal issues… degenerative disc disease and Arachnoiditis) that I decided why should I be on a narcotic drip 24/7 when I’m pain anyway? So three years ago, I told my doctor to wean me off of the medication. It took 11 months until they drained the pump and turned it off. It is still in my abdomen because it would be considered cosmetic surgery to have it removed and I would have to pay for the surgery out of pocket. Since it does not bother me, I ignore it.
I have continued to take gabapentin which brings me a fair amount of relief. At least I can function. In the beginning of the disease, I had to take 800 mg four times a day, the maximum dose. However, it left me lethargic and so gradually we decreased it. I have learned to tolerate a great deal of pain since I have a number of painful neurological diseases that cannot be treated. So today I take 300 mg 2 – 3 times a day.
I hope this information helps you. Do not be discouraged. There are many options available and some things work better for some people than others. I suggest beginning with the least invasive measure and the lowest dose. Most good doctors would recommend this route of treatment. If I did not have so many diseases, some of the early treatments may have been more effective. You are not alone. Talking with other people who have similar experiences can be very helpful and relieve some of the emotional stress that can intensify your symptoms. God bless you and keep the faith.
I started using the electronic nerve stimulator ReBuilder 2407 on November 20, 2018 for PN. An improvement (if you can call it one) is that I can feel the water when I put my feet into the divided tub. Occasionally I even feel a water temperature difference between my right and left foot. I am up to frequency 4.5 out of 8 for 1/2 hour twice a day. My goal is to walk down my front steps to the house unaided. After all you've been through it might be worth looking into. It is also good for Muscle exercise and to use as a Tens unit (3 in 1 capability).
Gabapentin 600 mg, 1 am,
1 noon, 2 bedtime
Duloxetine 60 mg, 1
Baclofen 10 mg, l am, 1
Vit B 12 100 mg, 1 tab
Alpha Lipoic Acid, 1am,
Hydrocodone 7.5-325, 1
every 8 hrs.
These are the meds that I take for my neuropathy. Are you interested in the other drugs I take for blood pressure etc. Also wanted you to know that my diagnosis is for “Severe Peroneal Neuropathy.” I just had a nerve conduction study done and the results came back with the above results. If you need any more info please send me a note. Thanks again for all your help!
Oh my it’s absolutly the worst possible symptoms I have ever experienced in my life! Burning numbness tight severe pulling and pressure on sooo many areas of my body.hands feet are just the beginning. Only treatment so far after 10 months of scans and tests and biopsies and pet,scan is some pain meds but they just help a certain amount. I am starting to go crazy,sorry I rambled….how are you doing? Oh my name is Larry I’m 65 years old.
Hi, Larry. P. Neuropathy 20 yrs here. Personally, I found that narcotics did not help nerve pain. The most beneficial drug I found is gabapentin (start at a low dose and move up). Just my opinion.
Hi Larry @larryl, welcome to Mayo Clinic Connect. I'm glad you found us! There is definitely a lot of different experiences here with different treatments and diagnosis. I have idiopathic small fiber PN but only have numbness and no pain (20+ years). My neuropathy is in my feet, ankles and just above the ankles a little.
Did your doctors or neurologist give you a diagnosis yet?
Hope you find something that works for you.
Hi Peggy, thanks so much for responding and so quickly. I had tried a trial of Neurontin and lyrical but it was not helpful Right now it seems the only med is oxycodone which I know can be a problem down the line,but it seems to help me. It seems I have soo many symptoms of ameloidosis,but all tests have been negative. I plan to listen to all of you and all others responding you all are so very kind!
Liked by John, Volunteer Mentor, peggyella
Hi John thanks for responding, all my symptoms seem to point to amyloidosis,but ALL tests so far are negative.Biopsis,pet scan,mri,s bone scans,genetic testing ,my doc has ran them all. One of my main problems is being afraid of the future and what will happen to me. I try to stay positive but sometimes I feel like giving up. Maybe this Mayo connect can help me,you are so kind to welcome me. I do look forward to sharing with you and from you.
Hi, @larryl – I'd like to add my welcome to Mayo Clinic Connect. Since you mentioned an interest in amyloidosis, as all your symptoms seem to point that way (though all tests so far are negative), you may be interested in checking out this thread https://connect.mayoclinic.org/discussion/al-amyloidosis.
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