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rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Sep 7 1:40pm | Replies (2194)

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@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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Replies to "I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up..."

What I was told was that if it is still an issue two years out, it is probably here to stay. My main issue is the numbness also. My hands – I constantly drop things and cannot use a pen, pencil, paintbrush for very long at all. As an artist, that is the pits. My feet are dumb across the bottom back to my heel and it feels like I have little sand bags under my toes. They tingle all the time. I have to be careful about hot or cold but then if I stub my toe or hit my finger on something, it about puts me on the floor. It is not debilitating but it is aggravating and sometimes depressing.

I hope for you some relief. I would be interested inn what you find out from the neurologist. I will be starting chemo again soon and suspect mine my be getting worse – but then who knows. Good luck on that doctor visit.

@grandma41 yes, the Gabapentin caused dizziness for me. My husband takes it with no issues at all. I almost fell a few times and I decided it was not worth the risk for me. I did take it for a few months; long enough for the mmedication to have worked if it was going to. I may have helped a litte.

I’ll post something after the visit on Thursday. All I’ll get is a baseline on how bad things are from an emg but possibly a treatment plan. I’m finding that rheumatologists don’t like to treat the worst problems caused caused by Sjogren’s due to the poor chances of improvement. I’ve tried two dmards, methotrexate and leflunomide, with little success and am hoping that this doc will give mycophenolate a shot. The worst thing about neuropathy when it passes a certain point is the gait problems, trouble walking. Anyway, thanks. I’ll pass on what I find out.

Hello Johnwburns I have had the neuropathy for about 3 to 4 years. It doesn’t get any better and sad to hear that yours got worse. It is not chemo induced but of unknown origin. And I also have restless legs syndrome which also created pain. The neuropathy is treated with a TENS machine and the rls with requip and tramadol. At night I put heated pad under my legs and prop them up with a pillow. I do have the pins and needles in legs and arms and numbness in my hands. And my walking is ofte unsteady. I agree that their is probably nothing that can be done for either condition just try to cope with it. Good luck. Im interested to hear what your neurologist has to tell you. Please share,.

Good to hear from you @rabbit10. Can you believe that this thread that you started less than 2 months ago has over 100 messages? Wow. You talk about restless leg syndrome. My mom and I both deal with this. I didn’t realize how many suffer with it and how bad it can be for some people. Did you see this discussion on RLS that started last month? https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/ Your input would be most welcome.

If you discover anything that helps with the numbness, I would be very interested in your thoughts. I am diabetic and have just recently started having the numbness in my hands. I was prepared for the prickly type of symptom, but not numbness. It is very annoying and a bit unnerving. Thank you.

After 10 years of very painful neuropathy, I am now trying a somewhat unconventional treatment. Medical Cannabis. it takes away almost all my pain and am left with almost complete numbness in both feet/legs. After being in pain for so many years
I welcome the numbness. Yes, it does make ambulating somewhat interesting, but I’ll take it instead of the pain.

A Mayo neurologist explained my symptoms this way. Pain/numbness, will eventually lead to numbness only once the nerve actually dies. He said there is no treatment for the numbness.

I was given the same speech from my Mayo neurologist. The current drugs being prescribed for pain for PN do nothing to repair the nerves, they only trick the brain into masking the pain but they can’t do anything for the numbness. I’ve been struggling 15+ years and watching the numbness start in my toes and work it’s way up to just below my knees. This past March I saw a Mayo neurologist and was diagnosed with SFPN. He basically said nothing they can really do but it should progress slowly and to let them know if something changes. Stupid on my part waiting so long to see a neurologist. When I first told my doctors about the numb toes and bottoms of my feet he told me that they can run some tests on the nerves. So I asked him what if they find I have damaged nerves, what can you do? Answer was nothing so I decided not to have the tests done.

Since March I have been doing a lot of research on my own starting with reading a book by Dr Terry Wahls – http://terrywahls.com/about/about-terry-wahls/. There are a lot of scams with supplements and treatments for PN that play on the suffering with the folk that have it. So you really have to be careful. I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some. Where it was just below my knees in both legs, it is now a little above my ankles and my feet feel better. Others in the group found that they no longer need to take the gabapentin and other pain relief drugs. It remains to be seen if it will completely get rid of my numbness but any improvement gives me hope. It may not work for everyone but it’s certainly worth a shot if you are in dire pain and the current treatment is not working. I ran the list by my Mayo doctor and she sent it to the pharmacist who gave me some conflicting feedback on dosages of one of one of the supplements omega 3 oils. His assessment conflicted with what I found on Mayo’s website – http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372. You should always run supplements by your doctor and discuss it with them.

There is hope so never give up and keep doing your own research. Good luck!

HOW DO I GET ON THIS Facebook group? I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some.
I GOT MINE FROM CHEMO. DR. DID NOT TELL ME ABOUT SIDE EFFECTS BACK IN ’96 I was supposed to have gotten 6 treatments then he ordered 8 to cover his backside.
Yikes chemo brain etc.
I can give u my email if that helps?

Hello Mari (@mari), if you are not on Facebook you will need to create a login, then the link should work. Once you join the group, please read the new member Welcome message which explains how to get started. It is a lot of reading but it is necessary and it is worth the time. Here is the link to the closed group – https://www.facebook.com/groups/SPNPD/.

Before you start the protocol, please have the discussion with your doctor. I gave the list to my PN who ran them by the Mayo pharmacist and I received sort of a ho-hum response which is what I expected. I only have numbness in my legs and feet and there are no drugs to treat numbness per my PN and my Mayo neurologist. They can only offer drugs to treat the pain which is caused by damaged nerves. The drugs come with a lot of side effects, none good. The protocol supplements work on repairing the damaged nerves which in return eliminates the pain and reduces the numbness. I have been taking the supplements since September. When I started I had numbness (no pain) in both legs from just below the knee to the toes. Now the numbness seems to start just above the ankles. No two people are the same and others that started with PN with pain and numbness were also taking the standard PN pain drugs – gabapentin, lyrica, etc.. Those people have been able to get off of the drugs which are not needed when the pain goes away. IT IS REALLY IMPORTANT that you discuss this with your doctor. If you read through the group you will be able read success stories from group members. I would join the group and read, read, read before you make any decisions. Also, remember that you are your best advocate and the one who makes the final decision.

Most of the research done for peripheral neuropathy addresses the pain and how to block the pain, etc.. I recently read an article on the Foundation for Peripheral Neuropathy’s website but can’t find it again. It referenced the following NCBI link which may provide more hope for those suffering from peripheral neuropathy – https://www.ncbi.nlm.nih.gov/pubmed/22201810.

Hoping for a better 2017 for all of us…

John

I have autonomic neuropathy as well as chemo induced peripheral neuropathy in my toes to my groin and also in the 1st digit of of my fingers. My endocrinologist surspect that I have Sjogren’s syndrome in addition to Hashimotos thyroiditis. My worst problem is also numbness which has gotten much worse in the last couple of years which really affects my ability to anything that involves standing on my feete because of very poor balance. I have gotten some help with Laser IV treatments together with soft tissue massage and regular PT. I’m hoping to purchase a Rollator with a seat so that I can get outside and walk more. .. hoping it will at least strengthen my legs so that I can go further, stand in lines, etc.

Best of luck with your chemo. Hope it doesn’t include taxol or taxotere as there seems to be a strong link between that family of chemo drugs and peripheral neuropathy