Hi all- Found this forum yesterday and have been reading almost non stop.. Back in 2004 I suddenly had calf cramping along with muscle twitching in my left calf. I thought it was because I had just gone on a run . The cramping was excruciating and lasted days and the twitching was non stop. Had an EMG which was normal.
Fast forward to 2021 and all these years my calf is still twitching but over time I also developed pain which I describe as shooting-burning- stabbing only in my left calf . It feels as though hot fireworks are going off continuously . It just recently started in my right calf after all these years. My neurologist has been useless and he is also a sleep specialist who had me do a
Sleep study (my third one) because he was convinced I had RLS (nope).
Anyway along with the constant pain my sleep is totally unrefreshing even with medications -Klonopin and Neurontin. I wear a sleep tracker but not sure how accurate it is.
It shows I only get deep sleep in increments of 10-15 minutes 3 or 4 times a night.
Does anyone else have totally unrefreshing sleep? It’s almost as bad as the pain to wake up feeling like this every morning.
I am due for a biopsy in August to figure out of I have SFN . I am not sure what they would do differently if I do.
Sorry so long but my sleep has become worse over the past six months and I am desperate .
I wish I could sleep standing up because I don’t feel pain when I walk or stand…

Welcome naturegirl0812

Hi naturegirl, welcome to the forum.
I'm sorry you're having pain and sleep problem. I have totally unrefreshing sleep but it's caused by other things as well as neuropathy. Just a thought, but considering that you said you don't feel pain when walking or standing, I would wonder if this pain is due to blood pooling in your calves and is vascular in nature. Has your doctor ever mentioned something like that?

I have some magnesium oil spray that I spray on my feet and calves every night and often during the day as well. I swear it helps a little.

Hi Nature girl,

Its interesting that you only get the symptoms in one side. It suggests something local. Have you considered myofascial release? I post a link below. You may find it unbearably painful, try it on your other leg first.
This woman Elisha Celeste, I think her name is, has plenty of interesting things to say about pain, emotions and trauma in a body keeps the score sort of way in other links.

Gastrocnemius fascia release - for outer knee pain, tight calves, Achilles pain & plantar fasciitis - YouTube

Best wishes,

Atty.

The pain and muscle twitching and cramping started after a run. I came in and sat down to cool off and that’s when it happened. The doctor first thought it was from “overuse” but then when I started with the pain is when he did the EMG.
I slowly started getting other weird symptoms and was later diagnosed with Lyme and treated for years. I had complete remission of the pain while on treatment but then had to stop due to low white counts. The pain and twitching slowly returned and continuous to get worse. It’s has progressed to my right calf but not as intense.
Doctors have no idea why I don’t feel it when I walk or stand but the minute I sit or lay down it starts. That’s why at first they thought it was restless leg but because I have such pain and no inclination to move my legs they rules it out.
I get very little deep sleep even though with medication I can fall asleep and usually stay asleep. Apparently the pain is kicking me out of deep sleep or not letting me get into it.
I am exhausted and tired all day every day.
It will be interesting to see if the biopsy shows anything .
The doctors have never mentioned blood pooling because I have the twitching as well.
Thanks for your thoughts. I was just hoping someone would have an idea about why such unrefreshing sleep.