Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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@julbpat

Read about voltage gated sodium channels (VGSC), if you like doing research.

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See my comment with article reference! Awkward Ipad!

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@julbpat
https://journals.physiology.org/doi/full/10.1152/physrev.00052.2017#:~:text=Targeting%20Nav1.7%20Therapeutically%20to,and%20small%20molecules.

Sorry, I’m working on my IPad, so copy and paste is awkward. This is an example of a research article mentioning Tegretol (carbamapezine). I’m sure there are many more articles. I had genetic testing, and it did not find one of these known variants, but since my sister has the same symptoms, I’m sure one will be found eventually. Happy to serve as a test subject for Tegretol in the meantime! It’s really a fascinating case study.

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Hi @julbpat, I used to struggle with copying URLs on my iPad to send them to friends until I found an easier way to copy/paste the page addresses.

To copy the URL at the top of the window, don't try to highlight the text. Instead click the small square with an up arrow to the right of the page address. This will open a menu and then you just have to select Copy URL and go to the post where you want to paste it.

Hope this helps!

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Hi, I don’t know where you are located but there is a treatment for neuropathy called Sanexas and if is amazing . I went for 24 trements and my neuropathy was reduced from the whole foot to only the toes . Instead of waking up 3-5 times a night to get ice ( which works great ) I only get up once , use ice for about 20 mins then back to bed . Pled look into this treatment . Also yih can get ice socks on Amazon . Good luck

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II have had non-diabetic neuropathy for around 15 years it started slow and now has become quite painful mostly I get the pain in my toes my feet are numb and tingly I take 2700 mg of gabapentin each day I take a B12 shot. I have tried CBD oil all other kinds of topic cole lotions the lotions didn’t help at all by accident I had to walk on a rough surface around my car to keep from getting my feet wet I took off my shoes it was painful walking on the rough surface but I noticed that night my feet weren’t hurting like always a few days later I repeated the same thing and my pain in my feet lesson I started doing exercises to improve my balance standing on 1 foot getting up on the balls of my feet I do this two or three times a day for about a minute and my pain level is dropping I have even started lowering my dose of gabapentin oh I didn’t make an appointment to go to the mayo clinic and I have one in 2025 yes that’s right my appointment is in June or July 2025

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@cbait

II have had non-diabetic neuropathy for around 15 years it started slow and now has become quite painful mostly I get the pain in my toes my feet are numb and tingly I take 2700 mg of gabapentin each day I take a B12 shot. I have tried CBD oil all other kinds of topic cole lotions the lotions didn’t help at all by accident I had to walk on a rough surface around my car to keep from getting my feet wet I took off my shoes it was painful walking on the rough surface but I noticed that night my feet weren’t hurting like always a few days later I repeated the same thing and my pain in my feet lesson I started doing exercises to improve my balance standing on 1 foot getting up on the balls of my feet I do this two or three times a day for about a minute and my pain level is dropping I have even started lowering my dose of gabapentin oh I didn’t make an appointment to go to the mayo clinic and I have one in 2025 yes that’s right my appointment is in June or July 2025

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My husband has neuropathy and has tried numerous treatments. What helps best is walking steps and riding
on a stationary bike.
At times he gets upset that he can’t walk better. It is very tough. His attitude is mostly upbeat, but I wish there was a treatment for the numbness in his feet and weakness in his legs.

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@roslyn

My husband has neuropathy and has tried numerous treatments. What helps best is walking steps and riding
on a stationary bike.
At times he gets upset that he can’t walk better. It is very tough. His attitude is mostly upbeat, but I wish there was a treatment for the numbness in his feet and weakness in his legs.

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It is difficult and I share his symptoms. Wanted to mention that when I last saw my neuro doc in mid Sept I was asked my largest issue/problem with my sensory motor PN, I said balance. I am now in PT and they are working on improving my balance. I am in for balance therapy. Fingers crossed - I was evaluated by physical therapist to be in the medium range of falling. For me, orthotics does help a lot.

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@julbpat

Read about voltage gated sodium channels (VGSC), if you like doing research.

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My neuropathy is so bad my legs and feet burn all day. Gabapentin has started giving me tremors and didn’t help. Cymbalta is not helping and neither did Lyrica. It is painful to even live a normal life. Anyone else with this problem?

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@njed

It is difficult and I share his symptoms. Wanted to mention that when I last saw my neuro doc in mid Sept I was asked my largest issue/problem with my sensory motor PN, I said balance. I am now in PT and they are working on improving my balance. I am in for balance therapy. Fingers crossed - I was evaluated by physical therapist to be in the medium range of falling. For me, orthotics does help a lot.

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Physical Therapy is very good. My husband has orthotics too. He says they don’t do much for him.

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@pamelaz

My neuropathy is so bad my legs and feet burn all day. Gabapentin has started giving me tremors and didn’t help. Cymbalta is not helping and neither did Lyrica. It is painful to even live a normal life. Anyone else with this problem?

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Perhaps this suggestion may help take the edge off. I discovered quite by accident that if I settle into a very comfy chair, elevate my feet, lay my hands at my side, then remain absolutely still, the discomfort ceases and I get a break from it. Eventually I built it into a mindfulness sort of thing in a room with a fine view and lots of sunshine, pausing several times a day for a self-care treat that can (and does) turn into a very nice nap.

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@pamelaz

My neuropathy is so bad my legs and feet burn all day. Gabapentin has started giving me tremors and didn’t help. Cymbalta is not helping and neither did Lyrica. It is painful to even live a normal life. Anyone else with this problem?

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Yes. I have the exact same problem.

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