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Donald (@donfeld)

Neuropathy Pain at Night: What helps?

Neuropathy | Last Active: Dec 27, 2022 | Replies (135)

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Hi Richard @richardrr, I saw your post about pain in your legs and calves feeling like they are constantly being squeezed and thought I would respond in this discussion – Neuropathy Pain at Night: What helps? so that you could meet @oliviaflickamay @artscaping @donfeld and other members who may be able to share some suggestions or experience with you.

You may also find the following discussions helpful.
— Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

If you haven't looked at alternative or integrative therapies, you might find some help on the Foundation for Peripheral Neuropathy's website here — https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

Do you mind sharing any treatments or therapies that you have tried to find relief?

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Replies to "Hi Richard @richardrr, I saw your post about pain in your legs and calves feeling like..."

Thanks John,
The Foundation link looks very helpful. I currently follow the Mayo neuropathy group.
I have tried lots of treatments and medication but haven't discovered the one that will stop the condition worsening. I have tried heat, cold, acupuncture, massage, meditation, Calmer Scrambler Therapy, high dose steroids for three days in hospital, ketamine therapy for 10 days and multiple medications including immunoglobulin.
I am now trying Serolimus/Rapamune to see if that will halt the progression.
Sleep is an issue as the discomfort is worse at night, the numbness and feeling of constriction and feeling of not being able to move my ankles is more severe.
Best wishes,