Living with Neuropathy - Welcome to the group

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

Hello @catro, Welcome to Connect. I'm 76 and have had PN for 20+ years. I haven't experienced the burning when sleeping but have been woken up by the sharp pins and needles and tingling in the arms caused by laying on my arm/hand while sleeping on my side which I think pinches a nerve. Mayo Clinic lists some causes for burning feet here: https://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809.

Just curious if you have asked your doctor why you can feel OK during the day but wake up at night with the symptoms you describe?

Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

@constitution thank you for the article identifiers - here is the links you mentioned for @catro.

Psychotherapeutic Approaches in the Treatment of Pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000182/

Psychotherapeutic approaches in the treatment of pain.
-- https://www.ncbi.nlm.nih.gov/pubmed/21152145/

@catro

I usually have pain in my feet which a spinal cord stimulator implant and a few medications keep the pain down to a tolerable level, but as soon as I lie down the pain instantly jumps to 6-8. I don't know why it happens. The same thing is true when I put my feet up in my recliner. But it hurts when I sit up with my feet on the floor, too.

I had 6 sessions with a pain therapist and I use a couple of things she told me. But otherwise it was a waste of time, at least it was for me.

I have this question on my list of things to ask my doctors about.

Jim

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'
https://www.medscape.com/viewarticle/920379_1

HI there @iceblue. I hope you had joy and laughter yesterday a day full of good memories. Thanks for the Medscape link. It went right to the article. Very thorough and a challenge to absorb. Did you find it definitive for you? If so, in what way. Be happy...be safe. Chris

John, Thx for finding the links. Hope they are helpful.

Wonderfully informative article that strained my knowledge of medical terminology (gained while working in the pharmaceutical industry) to the breaking point! For me the comments on lumbar sacral radiculopathy as a co-morbidity were helpful. If I understand it correctly, nerve entrapment (and stenosis?) can cause symptoms that can overlap with or even be confused with the symptoms of peripheral neuropathy. This makes differential diagnosis (including testing). VERY important.

@marazion - I spend a lot of time looking up medical terminology when reading articles like this, but I also spend a lot of time depending on context to help inform the meaning of some words. The article really caught my attention because until I was diagnosed with SFN, I firmly believed the pain was caused from something going on in my sacral area because I have a low level ache going on in that area almost all of the time....