# Peripheral Neuropathy



## tragerti (May 8, 2014)

Hello 50 +. Has any one here ever suffered from peripheral neuropathy and resumed riding again. Cause is still unknown. I have been tested for pinched nerves, Lou Gherigs disease, muscular dystrophy, and Type 2 Diabetes. If anyone has suffered from this what was your diagnosis. I'm starting my fifth month of constant pain, I've lost 20 lbs, and muscles are shrinking. I used to have Earl Campbell thighs now there almost all gone. I'm 51. It can't end this way. I've doing this for thirty years.I don't want to stop now. There's so so much more to do and see. can any body give me some hope.


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## telemike (Jun 20, 2011)

tragerti said:


> Hello 50 +. Has any one here ever suffered from peripheral neuropathy and resumed riding again. Cause is still unknown. I have been tested for pinched nerves, Lou Gherigs disease, muscular dystrophy, and Type 2 Diabetes. If anyone has suffered from this what was your diagnosis. I'm starting my fifth month of constant pain, I've lost 20 lbs, and muscles are shrinking. I used to have Earl Campbell thighs now there almost all gone. I'm 51. It can't end this way. I've doing this for thirty years.I don't want to stop now. There's so so much more to do and see. can any body give me some hope.


I went to the doctor in 2000 for a welcome to Kaiser appointment. The doc gave me a load of tests and one revealed a large excess of igm protein (part of an antibody) that indicated a Monoclonal Gammopathy of Undetermined Significance (MGUS). It is recognized as a lymphoma (blood cancer) and is called "Waldenstrom's macroglobulinemia". One of the several obnoxious symptoms is a peripheral neuropathy. Mine is largely confined to my feet and legs to the ankle. Fortunately, my lymphoma is an "indolent" one that I will probably die with rather than from.

I've ridden the entire time and skied, paddled, and hiked. The worse symptoms do not come often for me; I am rarely woken by pain and I don't have the hypersensitivity that some patients have.

I read a summary of a medical paper many years ago that discussed the utility of cannabis to treat these nerve pains. Few drugs can reduce the neuropathic pain much and those that do, like neurontin and norytriptaline, had evil side effects for me. Dope helps some but is no miracle cure. The article I read did not differentiate between CBD and THC for the pain relief.

If your physician did not test for abnormal proteins in your blood, ask him to. A lymphoma is like any other cancer in that early detection means a good prognosis.

Good luck and find a way to keep doing the things you love no matter what curve balls like throws you.


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## tragerti (May 8, 2014)

telemike said:


> I went to the doctor in 2000 for a welcome to Kaiser appointment. The doc gave me a load of tests and one revealed a large excess of igm protein (part of an antibody) that indicated a Monoclonal Gammopathy of Undetermined Significance (MGUS). It is recognized as a lymphoma (blood cancer) and is called "Waldenstrom's macroglobulinemia". One of the several obnoxious symptoms is a peripheral neuropathy. Mine is largely confined to my feet and legs to the ankle. Fortunately, my lymphoma is an "indolent" one that I will probably die with rather than from.
> 
> I've ridden the entire time and skied, paddled, and hiked. The worse symptoms do not come often for me; I am rarely woken by pain and I don't have the hypersensitivity that some patients have.
> 
> ...


 Thank you for the response. I haven't had that blood test yet. I see my doc on tues so ill ask about that. Thighs and feet along with forearms are where my main issues are. In December I started feeling some discomfort in those areas. Aching burning feeling in thighs and feet. Not real bad Just annoying. Funny thing was, I would go for a ride and all the pain would go away. I can't do that now. My bike is still in my car I cant lift it out. I'm on gabapentin right now and the side effects to suck. Loopiness, drowsy, nausea, heart burn, and a weird burning sensation in my nipples sorry if TMI. I do have the hyper sensitivity in my skin. Its my main obstacle to good sleep Clothes and bed sheets feel like sand paper. Do you drink coffee? Mornings are when I get nausea. I did an experiment this morning to see if there was another cause. Instead of coffee first then meds, I did meds first and coffee an hour later. I had light nausea not too bad. Then drank about half my normal amount of coffee. The nausea got worse. But I discovered some thing really interesting. When I get up in the morning is when the pain is the worst, feet especially. Like I wrote i usually drink coffee first then meds and my . feet feel ok after about 15 min. This morning the pain in my feet didn't leave until I had coffee. Very strange. Its funny you bring up cannabis. I used to live in a small town in the Santa Cruz mtns and grew my own for many years. My wife and I left California a year ago February. There is some acceptance for med canabis where we live but very limited. We live out in the boonies so I might be able to get away with growing again. I am eligible for med card. But I really wasn't planing on it. Its alot of work and right now I dont have the strength to do simple gardening along side my wife. Again, thank you for the response and for the kind wishes. I hope everything turns out well for you.


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## mudflap (Feb 23, 2004)

I'm in the same boat as telemike, almost to the date of diagnosis with WM. I've had neuropathy in my feet for ten years now and fortunately it hasn't sidelined me from riding, but skiing and hiking is different story. When it acts up, I use CBD salve or Topricin ointment on it - pain doesn't disappear, but is lessened enough to get relief. Get checked out, find out if your anemic (low hemoglobin count is sign of lymphoma.) 
Good luck.
Telemike, what is your treatment regimen? Are you taking Imbruvica daily? Doing infusion chemo? For your info, I did infusions of Bendamustine with Rituxan chaser for six months in 2014 (6 [email protected] a month.) I got about two years out of that before things started going south again. Since 6016 I've been taking daily oral Imbruvica which is keeping the WM in check. I consider myself to be real lucky that it works so well for me. Hopefully you've found something that is working for you also. Good luck on this journey.


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## TazMini (Jun 21, 2019)

tragerti said:


> Hello 50 +. Has any one here ever suffered from peripheral neuropathy and resumed riding again. Cause is still unknown. I have been tested for pinched nerves, Lou Gherigs disease, muscular dystrophy, and Type 2 Diabetes. If anyone has suffered from this what was your diagnosis. I'm starting my fifth month of constant pain, I've lost 20 lbs, and muscles are shrinking. I used to have Earl Campbell thighs now there almost all gone. I'm 51. It can't end this way. I've doing this for thirty years.I don't want to stop now. There's so so much more to do and see. can any body give me some hope.


I've been struggling with foot pain for last 18 months and trying to determine if peripheral neuropathy or something else. I also have many foot callouses and corns and I wonder if this is the source of my pain.

How does the NP pain differ from more spot pain? My feet don't hurt unless theres pressure applied. Enough socks and padding and pain goes from 8 to a 2, so this makes me think it isn't NP.

Sorry to highjack, but you all are first riders I've found with severe food pain to ask.

Sent from my iPhone using Tapatalk


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## tragerti (May 8, 2014)

TazMini said:


> I've been struggling with foot pain for last 18 months and trying to determine if peripheral neuropathy or something else. I also have many foot callouses and corns and I wonder if this is the source of my pain.
> 
> How does the NP pain differ from more spot pain? My feet don't hurt unless theres pressure applied. Enough socks and padding and pain goes from 8 to a 2, so this makes me think it isn't NP.
> 
> ...


I cant speak for the others only myself. Just concerning my feet there is a burning like sensation on the soles of my feet when sitting and even worse when lying down. The pain fades the more I walk around to almost non existant. Also hyper sensitive skin on the top side of my feet that is sensitive to temperature and touch.​


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## telemike (Jun 20, 2011)

mudflap said:


> I'm in the same boat as telemike, almost to the date of diagnosis with WM. I've had neuropathy in my feet for ten years now and fortunately it hasn't sidelined me from riding, but skiing and hiking is different story. When it acts up, I use CBD salve or Topricin ointment on it - pain doesn't disappear, but is lessened enough to get relief. Get checked out, find out if your anemic (low hemoglobin count is sign of lymphoma.)
> Good luck.
> Telemike, what is your treatment regimen? Are you taking Imbruvica daily? Doing infusion chemo? For your info, I did infusions of Bendamustine with Rituxan chaser for six months in 2014 (6 [email protected] a month.) I got about two years out of that before things started going south again. Since 6016 I've been taking daily oral Imbruvica which is keeping the WM in check. I consider myself to be real lucky that it works so well for me. Hopefully you've found something that is working for you also. Good luck on this journey.


I'm taking nothing specific to the WM - it is indolent and the protein levels are high, but not alarmingly high, and the risks of chemotherapy outweigh the benefits right now. I am in "watchful waiting" for both the lymphoma and my prostate. I hope to wait unitl the day after my funeral. That could change at any time.

I do take brownies with "Girl Scout Cookies" pot in them in the evening. It helps the neuropathy and sleep and, I admit, I like to take a little pot at night when I'm done for the day. I also generally have a bit of brownie before riding to take the edge off the foot pain - many here will not approve of this from a safety standpoint but, whatever. Note that most chemotherapy agents CAUSE peripheral neuropathy and can worsen it when killing the cancerous cells. Age is not for the weak!

I believe myself that most of the lymphomas are caused by gasoline, specifically the benzene, toluene, and xylene constituents. In the descriptions of the myriad non-hogkins lymphomas, the are almost all "associated" with work in chemistry or petroleum industries. The unifying exposure is to benzene et al.

My worst medical issues are self imposed. For instance, my painful skier's thumb, my brand new hip replacement, my lower back, my questionable knee are all skiing related. Worth it? I ski, therefore, I am.


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## Noddinggod (Apr 5, 2021)

My feet are always hurting me. At night it feels like someone is holding live wires to my feet and ankles. I am a guy with piss poor health insurance and never like going to the doctor unless I am deathly ill. I've tried lyrica and gabapentin and nothing helps. The only thing that helps is riding my bike or hiking. I know a few other guys with the problem and they find very little relief as well.


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## Noddinggod (Apr 5, 2021)

tragerti said:


> I cant speak for the others only myself. Just concerning my feet there is a burning like sensation on the soles of my feet when sitting and even worse when lying down. The pain fades the more I walk around to almost non existant. Also hyper sensitive skin on the top side of my feet that is sensitive to temperature and touch.​


Same here brother. I've tried lyrica and gabapentin. No joy. My father has it as well and nothing seems to help other than oxy but that's a whole different set of problems.


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## Bakervic (Apr 28, 2021)

Peripheral neuropathy is a common problem and for example, my mother has been suffering from it for a long time. I am sad to see her with such problems but I understand that everyone has their own destiny. Anyway, I'm very happy that for a year now her condition is much better and the medical tests are improving and everything is due to the supplements that improve blood circulation from Improve Blood Circulation | Rocket Man Naturals. I came across them through some doctors who said that many patients who suffered from this could be treated over time and we are really happy as in my mother's case the results are beautiful.


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## Eno Esool (Mar 30, 2021)

tragerti said:


> I cant speak for the others only myself. Just concerning my feet there is a burning like sensation on the soles of my feet when sitting and even worse when lying down. The pain fades the more I walk around to almost non existant. Also hyper sensitive skin on the top side of my feet that is sensitive to temperature and touch.​


Have you had a Lumbar puncture? Looking for CIDP?


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## D. Inoobinati (Aug 28, 2020)

tragerti said:


> I cant speak for the others only myself. Just concerning my feet there is a burning like sensation on the soles of my feet when sitting and even worse when lying down. The pain fades the more I walk around to almost non existant. Also hyper sensitive skin on the top side of my feet that is sensitive to temperature and touch.​


I'm coming up on 10+ years with PN in my feet and tried nearly everything. The only thing that worked extremely well was accupuncture with electricity, but it only worked for 24 hours. All 10 subsequent efforts to reproduce the effect were unsuccessful.
Chiropractic, CBD salves, dietary modifications like no-meat, no wheat, no alcohol, B complex vitamins, and other supplements were hard to differentiate from mild placebo effects. I tried a nervous system depressant for a few days (like gabapentin) and quickly stopped as it made me feel slow, stupid, and seriously bummed. In-depth forum research indicates that my experience is pretty typical.
My (and other) doctors are largely at a loss for a cure. My surgical neurophysio-tech son tells me that (in brief) nerves constitute 3 separate signal paths that, if cross-communicate, can cause a constant pain signal.

The bad thing is that it's awfully uncomfortable, the good thing is that's it's a "false" signal not indicative of damaged tissues, like diabetes or 3rd degree burns. So far, I've managed to live with it. Some days it's an eye-watering burn, other days it's walking around barefoot feeling like I got small rocks in my shoes. Luckily it's not in my hands. Any activity that distracts from the pain is best; going to sleep, where you can focus on the pain, is the worst.


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## Eno Esool (Mar 30, 2021)

D. Inoobinati said:


> I'm coming up on 10+ years with PN in my feet and tried nearly everything. The only thing that worked extremely well was accupuncture with electricity, but it only worked for 24 hours. All 10 subsequent efforts to reproduce the effect were unsuccessful.
> Chiropractic, CBD salves, dietary modifications like no-meat, no wheat, no alcohol, B complex vitamins, and other supplements were hard to differentiate from mild placebo effects. I tried a nervous system depressant for a few days (like gabapentin) and quickly stopped as it made me feel slow, stupid, and seriously bummed. In-depth forum research indicates that my experience is pretty typical.
> *My (and other) doctors are largely at a loss for a cure.* My surgical neurophysio-tech son tells me that (in brief) nerves constitute 3 separate signal paths that, if cross-communicate, can cause a constant pain signal.
> 
> The bad thing is that it's awfully uncomfortable, the good thing is that's it's a "false" signal not indicative of damaged tissues, like diabetes or 3rd degree burns. So far, I've managed to live with it. Some days it's an eye-watering burn, other days it's walking around barefoot feeling like I got small rocks in my shoes. Luckily it's not in my hands. Any activity that distracts from the pain is best; going to sleep, where you can focus on the pain, is the worst.


Unfortunately there is no cure for polyneuropathy.


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## Tall BMX'r (Jan 11, 2021)

My wife suffers from neuromas in her toes. She had a lot of foot pain from bunion's on her big toes. Just the pressure from blankets on the bed or long bike rides make them hurt. Putting on ski boots was super painful, and she couldn't wear them long. She had bunion surgery on both feet (cut her toes bones and straightened them out with metal screws). Some of the pain went away, but now the neuromas are the main pain. Her surgen recommended a brand of running shoes that are extra extra wide. I found the 'Morten's neuromas ' foot bed pads that are a half dome that pushes up on the ball of the foot and splays the toes and put them in her shoes. This frees up the bound nerves between the toe bones and relieves the pain. She can now work all day on her feet with no pain. She doesn't have pain riding the bike anymore either. 
I found some new rear entry ski boots for her that have a single buckle system that lock the heal area down, but doesn't clamp any pressure around the ball or toe area. I bought them a size bigger, put the Morten's neuromas pads in, and some peal and stick EVA foam padding to get it tight around the rest of her foot. She can now ski again pain free and get her foot in and out of the boot pain free. She does feel a slight lack of control because the toe area is loose, but still had fun and never fell. She's climbing Mt Whitney next month and I've just about got her new hiking boots dialed in for her. 
Sometimes the pain can be treated mechanically


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## Noddinggod (Apr 5, 2021)

Yeah the bed covers really bother me at night. I'm lucky enough that if I'm moving around is bearable. Kratom helps quite a bit but it's not worth getting strung out on


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## H0WL (Jan 17, 2007)

I had progressively worse achy foot pain and ankle stiffness (not neuropathy, I don't think) since Dec. 2019
Finally went to my podiatrist who sent me straight to a rheumatologist. That doc ordered a bazillion blood tests AND an MRI. All blood tests were negative for RA indicators. The rheumatologist diagnosed me with seronegative rheumatoid arthritis based on the MRI. I'm on my 3rd week of methotrexate. Hiking is out, but I can ride my flat pedals OK for now. Hoping the methotrexate helps. It takes awhile to kick in. 

There's all kinds of foot pain, but don't ignore it. Early treatment is better. I'd have had an earlier diagnosis were it not for quarantine, when I put off all doc visits for over a year.


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