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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
My name is Craig,
I have SFN and it is extensive over my whole body, including my scalp and hair follicles. Over time it has played havoc with my skin on my arms, neck and shoulders. The skin is discolored and burns like having a sunburn. It is very uncomfortable.
The brunt of my attacks are at night after I have been in bed and asleep for about 1 hr. Than when I re-position myself in bed the discomfort starts. A hot burning sensation all over my body. Everywhere. It is horrible. Sleep is difficult. The next day I am drained and don’t start to recover till mid morning and know I will face the same thing again when I retire for the night. Is there anyone out experiencing the intensity of such attacks of SFN in their lives? kcshoemaker
Replies to "My name is Craig, I have SFN and it is extensive over my whole body, including..."
Hi Craig @kcshoemaker, I would like to add my welcome to Connect along with @rwinney and other members. I'm glad you are here learning more about your condition. Can you share when you were diagnosed with SFN and if your doctor or neurologist started you on any treatment to help with the pain you are experiencing?
Hi Craig, I’ve had SFN for a couple of years and just began experiencing the discoloration in my arms-mostly freckles of all sizes and some light pink spots plus a slight burning. This starts after I wake in the morning. I have also noticed that I am losing more hair than usual. I’ve started taking vit. E and biotin to see if that helps. It seems that there are a crazy amount of symptoms associated with this disease and no good explanation for its cause. Are you taking any meds or supplements presently? Helen
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Hi Craig @kcshoemaker, welcome to Connect. I'm very sorry to hear you have SFN and are experiencing such pain and discomfort, especially at night. I too have SFN and have been up and down and all around with it for almost 4 years. I have polyneuropathy so I experience full body as well. The sun burning is awful. I've had various places such as my face, calves, around knees and thighs. Couldn't stand clothing touching these areas. The good news is that with help of Lyrica (Pregabalin) and supplements like Acetyl L Carnitine and Alpha Lipoic Acid, these feelings have eased with only occasional bouts. I developed insomnia from pain that kept me awake or woke me up. I have received help from medical marijuana which settles and calms my body's pain, burning, aching etc...and helps me sleep. You are not alone and I'm glad to help as best I can from my experience and knowledge of the disease. You will find many others here willing to help also. Glad you found us.
Wishing you a restful evening. Be well.
Rachel