Neuropathy in both feet

Posted by eddiestella1 @eddiestella1, Jul 30, 2023

Do any of you have ph. Neuropathy in both feet? I have had every test there is to figure out why. I am in that small percentage where they don’t know what it’s from. I have had nine back & SI joint fusions and they are telling me it’s not from my back because it’s in both feet. After various surgeries I was put on nerve meds because of nerve Dane in one foot. Over time it moved to both feet. I also have circulation issues where my feet are cold one minute and red the next.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Thankfully mine in fee and hands is "mild" compared to many people; was from taking a Quinolone drug (Norflox) in 2016... is there a possibility yours is from a medicatin? I saw a neurologist and had a test done on nerves but as have so many reactions to drugs and have other issues, I told him I can manage. Right foot a bit worse than left... first noticed when woke up and walked across carpet in bedroom and its was as if i could feel every single fibre and hurt and then trying to cook breakfast and hands not the same and tingly etc... typical mild neuropathy but a bit worse over the years and now dropping things a lot, spilling, and a bit wobbly on feet - not so much walking around house but standing for a while/stairs so no quick moves. Thankfully the pain isn't bad except when go to bed and soon as lie down toes cramp up and seem to have a life of their own and that hurst and i put warm pad on feet. Me too re the cold or hot... but now have had boiling face and area over a year with no answers wondering if its something else... tests I had were minimum hopefully you will get some helpful comments from other readers. .. take care, J.

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I would get pain in my feet from a combo of tight socks and cold temps.

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I have small fiber neuropathy, and I was told that it can be around 30% of cases are "idiopathic" aka with no known cause. I'm not sure if it's the same with the more well-known large fiber peripheral neuropathy, but sadly it's common for there to be no known cause =/

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Anyone using CBD products that help their neuropathy? How do I know what products to use?

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I use Fab CBD cream, and it seems to help me feel more comfortable, but it doesn’t completely resolve it. Everyone is different and there are a zillion different ones. It really just depends on what you prefer, as long as you try to get a reputable one that’s been tested so you know what you’re getting.

I chose this specifically because it’s full spectrum, meaning it includes all of the compounds that naturally occur in the plant, including a tiny fraction of THC (not enough to get you high), and it doesn’t include menthol like many other topical CBD creams. I didn’t want one with menthol because I figured then I wouldn’t be able to tell if it was the actual CBD or the menthol affecting me. I also like the smell, which is blood orange.

You can also get broad spectrum CBD, which has no THC but could have trace amounts or CBD isolate, which has no other parts of the plant in it.

But it’s believed the compounds work synergistically, and may not be as effective on their own, which is why I chose a full spectrum cream.

There’s a thread about topicals here, not just CBD: https://connect.mayoclinic.org/discussion/topical-creams-and-lotions-for-small-fiber-neuropathy/

And some info about types of CBD:
https://www.medicalnewstoday.com/articles/full-spectrum-cbd-vs-broad-spectrum-cbd

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Hi @eddiestella1, Sorry to hear you are having neuropathy symptoms in both of your feet along with your back problems. Not sure why your doctors said that it's not from your back because it's both feet. From what I've read, spinal nerve compression can cause neuropathy symptoms in both feet. I have idiopathic small fiber peripheral neuropathy along with degenerative disc disease and lower back issues. I'm not sure my back is causing my neuropathy as I've never had any back surgeries but I do have a family history with neuropathy and other arthritis conditions.

"Can back problems cause neuropathy in both feet?
Yes, as spinal discs degrade they can affect nerves that travel into the feet. In some severe cases, degenerative disc disease (DDD) can cause nerve problems in the feet. Degenerative disc disease, specifically of the lumbar spine, can actually cause nerve pain to radiate into the feet from your spine."
--- Can Degenerative Disc Disease Cause Nerve Problems in the Feet?: https://www.healthcentral.com/condition/degenerative-disc/can-degenerative-disc-disease-cause-nerve-problems-feet.

If you haven't taken a look at the Foundation for Peripheral Neuropathy site, you might want to look through at all of the different complementary and alternative treatments listed for neuropathy - https://www.foundationforpn.org/living-well/.

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I have had neuropathy consistently in my feet for the past 4 years. Started around the toes and soles of my feet. It was attributed to my Rheumatoid Arthritis, so I just lived with it. This year I noticed the tingling making its way up my calves. So off to the neurologist I went . There was no definitive diagnosis. Doctor recommended Cymbalta 🤷‍♀️, which makes no sense.
I am not in any pain, just 24/7 tingling & numbness. It’s worse at rest. My RA meds are minimal. I have been on Plaquinil since 2012.
My RA is well managed, considered mild-moderate. Blood work has always been normal. I am considered zero negative.
I appreciate any recommendations or thoughts on what direction to take here. Something has to be causing this numbness.

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@johnbishop

Hi @eddiestella1, Sorry to hear you are having neuropathy symptoms in both of your feet along with your back problems. Not sure why your doctors said that it's not from your back because it's both feet. From what I've read, spinal nerve compression can cause neuropathy symptoms in both feet. I have idiopathic small fiber peripheral neuropathy along with degenerative disc disease and lower back issues. I'm not sure my back is causing my neuropathy as I've never had any back surgeries but I do have a family history with neuropathy and other arthritis conditions.

"Can back problems cause neuropathy in both feet?
Yes, as spinal discs degrade they can affect nerves that travel into the feet. In some severe cases, degenerative disc disease (DDD) can cause nerve problems in the feet. Degenerative disc disease, specifically of the lumbar spine, can actually cause nerve pain to radiate into the feet from your spine."
--- Can Degenerative Disc Disease Cause Nerve Problems in the Feet?: https://www.healthcentral.com/condition/degenerative-disc/can-degenerative-disc-disease-cause-nerve-problems-feet.

If you haven't taken a look at the Foundation for Peripheral Neuropathy site, you might want to look through at all of the different complementary and alternative treatments listed for neuropathy - https://www.foundationforpn.org/living-well/.

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Thank you! And thank you for the information. I don’t understand why they said that either. Unless they can tell from the MRI’s & CT’s that I had. I do have one compression that they can see but said it was too high up to cause neuropathy in my feet. I definitely have degenerative disc disease all the way up my spine. I had my L5 & L5 disc fused. L4 fused last fall and it’s still fusions. I had six right SI joint fusions and last fall they also removed screws and added new screws to my SI. So supposedly my right SI looks like it’s suppose to buy yet I’m in worst pain of my life in my right SI joint. On my left SI it hurts but not as bad as my right side but yet I have loose screws on my left side. They never did a fusion on my left SI but they added hardware for sone reason. Even though I never had pain in my left side until after they added hardware without my knowledge. Then add the neuropathy issue like I’m not dealing with enough. After a few of my SI fusions I was out on Gabapentin because they knew it was going to cause issues in my foot. At that time it was only neuropathy in my right foot but the. Gradually it went to both feet. Both neurologist and three orthopedic docs say it’s not from my back. But I also had two pain docs that say it could be from all the surgeries. They also said I could have Complex Regional Pain Syndrome resulting from all the surgeries.
Thank you again for all the info. I really appreciate it.

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@kensiejames

I have had neuropathy consistently in my feet for the past 4 years. Started around the toes and soles of my feet. It was attributed to my Rheumatoid Arthritis, so I just lived with it. This year I noticed the tingling making its way up my calves. So off to the neurologist I went . There was no definitive diagnosis. Doctor recommended Cymbalta 🤷‍♀️, which makes no sense.
I am not in any pain, just 24/7 tingling & numbness. It’s worse at rest. My RA meds are minimal. I have been on Plaquinil since 2012.
My RA is well managed, considered mild-moderate. Blood work has always been normal. I am considered zero negative.
I appreciate any recommendations or thoughts on what direction to take here. Something has to be causing this numbness.

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Hi @kensiejames, I think you and I are among the 20% or so of the so called lucky folks with neuropathy to only have the tingling and numbness and no neuropathic pain. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. There is another discussion where members are discussing the numbness only symptoms that you might find helpful:

--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

I think it's great that you are able to manage your RA with the meds minimal. The Cymbalta doesn't make sense to me either, especially if you have no pain associated with the neuropathy in the feet. If you haven't already seen this article, you might find it helpful.
--- Rheumatoid Arthritis Neuropathy: Numbness and Tingling: https://www.healthcentral.com/condition/rheumatoid-arthritis/rheumatoid-arthritis-neuropathy

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@kensiejames

I have had neuropathy consistently in my feet for the past 4 years. Started around the toes and soles of my feet. It was attributed to my Rheumatoid Arthritis, so I just lived with it. This year I noticed the tingling making its way up my calves. So off to the neurologist I went . There was no definitive diagnosis. Doctor recommended Cymbalta 🤷‍♀️, which makes no sense.
I am not in any pain, just 24/7 tingling & numbness. It’s worse at rest. My RA meds are minimal. I have been on Plaquinil since 2012.
My RA is well managed, considered mild-moderate. Blood work has always been normal. I am considered zero negative.
I appreciate any recommendations or thoughts on what direction to take here. Something has to be causing this numbness.

Jump to this post

Was your neurologist able to rule out disc compression, or did you ever get evaluated by a PT or physiatrist?

I have small fiber neuropathy (meaning the sensory nerve fibers are affected, but it generally doesn’t cause weakness and gait instability which is usually caused by the more common large fiber neuropathy). This is the type associated with autoimmune or chronic pain conditions (I also have an inflammatory arthritis), and a large percentage have no known cause.

I still have it, but it’s not as severe as before. But when I saw neurologists, they didn’t catch that I was having referred burning, numbness and tingling from disc compression in my low back. I’d had a spinal fusion when I was age 11, but this can happen as you age.

A PT realized it and prescribed simple stretches to do regularly to help create more space between my vertebrae, which relieved the burning. When we’re leaning forward and sitting so much of the day, the vertebrae smush together with the disc in between, kind of like an ice cream sandwich when you’re pinching it together on one side. That compresses the disc and sends nerve pain to the parts of your body where it’s connected

Or you could try the stretches at home to see if it helps; that’s basically what we did in PT. You can use any variation of sphinx or cobra pose from yoga, if you don’t want to do it on the ground you can look up modifications to do it upright.

I wanted to share it because it’s one thing that didn’t come up in the doctor’s office for me. I’m guessing you’ve already gone through this but other causes are impaired glucose tolerance/prediabetes, celiac disease or gluten sensitivity, etc. A neurologist told me about the connection to gluten intolerance and since I reduced gluten I’ve seen an improvement.

I take low dose naltrexone, which I’ve seen here some people say it helps their neuropathy. Cymbalta gets prescribed for nerve and other chronic pain because it’s supposed to alter the way your brain sends pain signals.

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