← Return to Aching legs from Small Fiber Neuropathy

Discussion
Rachel, Volunteer Mentor (@rwinney)

Aching legs from Small Fiber Neuropathy

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

Comment receiving replies
@rwinney

It forever remains a challenge, doesn't It? My aching is part but also severe cramping, burning pain and new sensations appear. I'd like to say the Lyria, Cymbalta and hydro work however, do they really? There are so many shifts in my body with new symptoms and pains that I'm baffled but, afraid to drop any current meds out of fear things will get worse than they already are. Its sad that I dont want to get up today because I fear for my body and what the day brings. Its quite exhausting and drains me most days. Not one part of my body has been left alone for freedom. Quality of life is diminishing more than it already was and I'm patiently waiting for the next attempt at relief through medical cannabis. Im getting referred to a medical marijuana state licensed PCP. Another move, if I drop my lidocaine infusions, is plasmapherisis. I just don't know anymore…no-one speaks of this procedure on the forum so again it remains a mystery and an individual crap shoot. Will it help, won't it help??? All trial and error for each individual. I will continue to trudge on as I preach we must do and those before me remind me we must do. Im at a point now where I'm tired of masking the pain and I want to be a part of healing and forward progress…its just not time yet.

Jump to this post


Replies to "It forever remains a challenge, doesn't It? My aching is part but also severe cramping, burning..."

@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

In light of this post and a few others of mine, heres my update:

Went to my existing Neuro for additional relief options and questioned plasmapherisis and IVIG. He said, auto immune doesn't line up with my case (based on last years spinal tap) however offered to send me to his colleague as I had requested updated EMG/Nerve Conduction study (last done 2 years ago).

After the 2 drs reviewed my case…I was told again that I don't line up for IVIG (immune deficiency) however, they will oblige me by conducting a new study. I asked, how about plasmapherisis then??? The response I received was, let's just do the new study first.

Who knows…the muscle weakness through my whole body has declined and not that I want to go through the miserable test again, I feel it should be ruled out. Maybe it'll be fine and my weakness is simply SFPN.

Questions for anyone out there…

1. Have you had EMG/Nerve Conduction study results change over time and become positive after a re-do?

2. Have you received plasmapherisis and what were your results?

Thank you
Rachel