Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@fala

I have had PN for years and years. It went full blown crazy in August 2018. I tried Gabapentin for my pain and it seemed ok at first. After taking it for several days, I realized I had a severe allergic reaction with swelling. I could only eat liquids, no solids for about a week. The PN pain was severe, so I was prescribed Cannabis. This has made a huge difference in my pain relief. I forgot to take it one day and wow, I can't function without it. It is expensive, but I would give up most anything before I would stop this med… it works!

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I'm glad to hear you got some relief. Can you share with us what type of cannabis you used? i.e, did you smoke it, use oils to put under your tongue? Also, what brand, ;i;e, Grape ape etc. Thanks

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@anya40

Hello, I'm new to this website and am in hopes that someone will respond to my post. I was recently diagnosed with polyneuropathy. Three weeks ago, I had an appointment with my PC doctor and told her that at night I'd been having burning in my lower legs and a crawly feeling in the soles of my feet. She diagnosed polyneuropathy and prescribed gabapentin. I have a lot of allergies to drugs and the gabapentin burned my stomach and causes itching all over my body, I stopped taking it. I haven't told my doctor that I stopped and been dealing with the discomfort by using topical gel and ice pad socks to enable me to sleep at night (I have no pain during the day.) I know nothing about this disease and don't know what to expect. I've also read that people who have this disease can suffer with terrible pain and crippling effects, so, treatment should be started as soon as possible. I have polymyalgia, giant cell arteritis, and rheumatoid arthritis as well as severe varicose veins. All that combined causes a lot of different symptoms so I'm wondering if I've been misdiagnosed since my nighttime symptoms are not all that bad. What are your thoughts? Any insight would be greatly appreciated. Thank you.

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My peripheral neuropathy symptoms initially only occurred at night. Unfortunately, months later they progressed to also occurring during the day. You may wish to ask your primary care doctor now for a referral to a neurologist. There can be a long wait to see one and that way you will receive timely care.

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I'm still trying to figure out what's happening with me. I get numbness in my legs, usually the calf, when i walk it feels stiff along with my knee, for the most part its primarily my right leg, but the sensations have been felt in my left leg also. I also have had nights where the numbness in my arms has kept me up for hours, it felt like it radiated down my arm to fingers. I've also had dull achey l feelings in upper legs and sometimes arms. I also experience muscle spasms from time to time in my arms, legs, sometimes lower back. Fatigue at weird times of the day too, but they may be from the lack of overal sleep I've been getting. Has anyone else had feelings/symptoms like these? My primary has me doing all sorts of tests, blood work which came back relatively normal(lower on the B12 and Phosphate side but not deficient), x-rays of my neck/lower back area(nothing out of place or glaringly wrong), being sent for an Echo and stress test soon because of the arm numbness, mri of the back is next i think, I've gotten a referral to see a neurologist but have to wait till Feb. Sorry for the book

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I had the same/similar issues a few years ago. I went to a certified Canial Sachral physical therapist. Most of the issues were eventually resolved with her help.

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@jfn

I had the same/similar issues a few years ago. I went to a certified Canial Sachral physical therapist. Most of the issues were eventually resolved with her help.

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*cranial

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@jfn

I had the same/similar issues a few years ago. I went to a certified Canial Sachral physical therapist. Most of the issues were eventually resolved with her help.

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Welcome @jfn, I was not familiar with Craniosacral Therapy and when I looked it up and it sounds a lot like Myofascial Release Therapy which some members have found helpful. There's also a discussion on MFR here – https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

What is craniosacral therapy (CST)? – https://my.clevelandclinic.org/health/treatments/17677-craniosacral-therapy

Are you able to share a little more about your diagnosis and symptoms you had which were helped by the Craniosacral Therapy?

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@cstroinski

Thanks Chris I did work with pain management doctor on making the switch. There is literature suggesting no tapering needed if you are using for neuropathy vs. seizures.

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Wow….I have obviously not read that literature. Would it be possible for you to list the source of the tapering information for me? Perhaps you already know the difference between neuropathy and seizures when it comes to medication. I am not sure I do. Thanks so much.

Are you also using medical cannabis?

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@artscaping

Wow….I have obviously not read that literature. Would it be possible for you to list the source of the tapering information for me? Perhaps you already know the difference between neuropathy and seizures when it comes to medication. I am not sure I do. Thanks so much.

Are you also using medical cannabis?

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Here is where I found it. I asked my doctor about weaning and was told there was no need as I was using Gabapentin for peripheral neuropathy not for control of seizures.
I have tried cannabis and it seems to help me sleep, but no real difference in PN symptoms.
https://ahpnetwork.com/wp-content/uploads/2018/05/Admelog-May-2018.pdf

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I follow connect daily and I’m not sure where to put this question so I’ll leave it to the monitors. I have had Neuropathy for about a year and I’m on gabapentin. My symptom is not pain or burning but instead ice cold feet. I just read about a patch called Capsaicin and wonder if anyone has used it with any relief? Appreciate any feedback, Bcool in Colorado

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@bcool123

I follow connect daily and I’m not sure where to put this question so I’ll leave it to the monitors. I have had Neuropathy for about a year and I’m on gabapentin. My symptom is not pain or burning but instead ice cold feet. I just read about a patch called Capsaicin and wonder if anyone has used it with any relief? Appreciate any feedback, Bcool in Colorado

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@bcool123, I have no medical training or background but from my research and talk with my medical team who originally prescribed gabapentin, I found out the drug is only for pain from neuropathy and does nothing for numbness or cold feet. Maybe others can share their experience that may be different. I did find an interesting article but it's about nerve injury related to non-freezing cold but it's addressing pain caused by the injury and not making your feet warmer.

Capsaicin 8% Patch Treatment in Non-Freezing Cold Injury: Evidence for Pain Relief and Nerve Regeneration:
https://www.frontiersin.org/articles/10.3389/fneur.2021.722875/full

During the winter when my feet feel really cold, I use neoprene toe warmers which are small sleeves that slip over your socks and cover the toe area (https://www.amazon.com/Hot-Sockee-Neoprene-Warmers-Construction/dp/B076B4PDZR). I also use the stick on toe and feet warmers that come in individual packages when I'm out in the snow or cold – https://www.amazon.com/WORLD-BIO-Toe-Warmers-Odorless-Activated/dp/B08PYSMNP9

I think others have also mentioned deep tissue massage for the feet help but I have not tried that yet.

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@bcool123

I follow connect daily and I’m not sure where to put this question so I’ll leave it to the monitors. I have had Neuropathy for about a year and I’m on gabapentin. My symptom is not pain or burning but instead ice cold feet. I just read about a patch called Capsaicin and wonder if anyone has used it with any relief? Appreciate any feedback, Bcool in Colorado

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Hi @bcool123
My feet are also very cold. I discovered if I use a foot warmer at night, it changes how I start and end my day with huge relief that lasts all dasy if I am inside. I wear Merino wool socks as well. There are also foot warmers you can buy to put in your shoes. Best wishes!

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John and Fala. Thank you for your response to my question. I will see my doc in a week or two and ask about the Capsaicin although I doubt he will prescribe it as it sounds as if it is still being investigated. I use the neoprene socks and wool shoe inserts suggested by John earlier. I also use the hot Hand toe warmers. In the evening I use my go to Rockdove slippers and Cozy Winter large foot of the bed heating pad which I absolutely love. Fala, what kind of foot warmer are you talking about? I appreciate your responses really appreciate Connect for all of the suggestions and discussions it provides. Hope you have happy healthy holidays, Bcool

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