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Rachel, Volunteer Mentor (@rwinney)

Aching legs from Small Fiber Neuropathy

Neuropathy | Last Active: Aug 28, 2021 | Replies (134)

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@lorirenee1

@rwinney Hi Dear Rachel, You feel awful. How to live this way? You take many drugs, but all in all, they do not work very well, and you fear getting out of bed. My heart feels broken, reading/feeling your suffering. I have had a horrid week. I wake up hopeful, and before my eyes are barely both open, the pain sets in. Only Kratom really works, and it is addictive. I have to be so careful with it. Bottom line for this neuropathic stuff, is there are no answers, no drugs, that totally take pain away. I wish I could wave a magic wand, and cure both of us. I know I am better when I walk, but who can walk all day? And why am I better walking? You are so smart, and you work so hard at this. That in itself is exhausting. I have been reading about brain/central pain. Our pain mechanism works too loudly. It is over amplified, and will not stop. I tell myself I am ok, that I do not need pain. That I am safe and well. I "tap," away pain, which sometimes even works. I roll golf balls under my feet. I smoke reifer. I know we are lovely, loving people. Who would ever believe this? I am giving you a hug. I am telling you to cry, and let go. Destress, at least. I am thinking about what to take to get me through the morning. I think, CBD drops. I save Kratom for when I just cannot take it anymore. I hope marijuana works for you. I will get the medical kind when marijuana becomes legal here in Illinois in January. What can I say to you, Rachel? Only that I am here listening and feeling you. Maybe turn on some music, and try to drift to sleep. I wish I had one good answer. Kratom is one good answer, but it scares you. I don't blame you. It scares me. But I take heed, and take it when I must. Your soul is a joy. That I know. Lori Renee

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Replies to "@rwinney Hi Dear Rachel, You feel awful. How to live this way? You take many drugs,..."

I feel your pain way more than I want to! Crawl into bed oh feel the burn and finally go to sleep despite pain,wake up way too many times. Keep moving stretching any trick to help,wish i had treats! When morning comes there it is lurking building momentum to scream all day
but we do keep moving don't we?

Thank Lori Renee. Your words are helpful, as usual, and I appreciate them very much. We will all keep persevering because we're strong.
Thanks again. I wish you well.
Rachel