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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)
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@catbeth57

Hi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.

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Replies to "Hi all I am an RN and have PN due to DM and Sarcoidosis for 25..."
John, Volunteer Mentor | @johnbishop | May 22 7:26am

Welcome @catbeth57, Thanks for sharing what helps with your neuropathy symptoms. I also have neuropathy but mine is idiopathic small fiber PN. I shared my journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think one of the best things we can do to help is to become a better advocate for our health by learning as much as we can about neuropathy and what treatments are available. Being an RN, it sounds like you are already doing the learning part and figuring out what might provide relief. I'm not sure if you have seen these sites on neuropathy but thought I would share them with you.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

You might also like to scan through a list of the discussions members have created on spinal cord stimulators. Here's a link to the search results - https://connect.mayoclinic.org/search/?search=Spinal%20Cord%20Stimulators

Was it a spinal cord stimulator that your pain doctor recommended?

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harley22 | @harley22 | May 22 10:34am

I’m experiencing same symptoms as you for about 12 yrs now.
Tramadol helps, Gabapentin did not.
Haven’t tried the socks, but one eve I tried putting ice on my foot where it hurt,and it was so painful I had to take it off.
I use a CBD ointment when pain isn’t too bad,then I wear reg socks,and that will help sometimes.
Haven’t tried compression socks you recommended.

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artemis1886 | @artemis1886 | May 27 7:46am

I can’t do a Tens Unit. I have seizures and fall straight backwards. Since mine is severe sensorimotor (something ) polyneuropathy., SFN, and CAN - cardiac autonomic neuropathy. Since mine is motor also I have tremors in my arms/legs it really mess with my balance. I have not been able to endure tens units after I had bacterial spinal meningitis. It sends my nervous system into over load. The antibiotics from the spinal meningitis caused my neuropathy then autoimmune disorder.

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