I started having pain in my left foot that traveled up my calf than it moved to my other foot and up to my right calf than to my hands. It finally went into my buttocks and hips. I saw several doctors and finally saw a Musculoskeletal Neurologist who did several blood test, EMG,MRI and skin lab test which all came back normal except the EMG test showed nerve problems in my lower spine. I was sent to a surgeon for the 2nd time the 1st time in 2018 the surgeon said I had a bulging disk L4-L5 and I didn't need surgery than told me to see a chiropractor. I was in so much pain and it had travel to my hands. I was treated by 3 different chiropractors and nothing helped. I went to another prominent neurosurgeon in 2020 and was told I had a herniated disc between L5-S1. I figured the chiropractors did it but the pain was traveling up my spine, I have numbness, skin sensitivity, painful pricking, sharp electric shock like pain that seems to be damaging my muscles. So I under went surgery but to this day the pain is still traveling up even to my tongue, temples and at times my face. I'm very sensitive to the sun never was before and clothes. I'm now back to seeing the Musculoskeletal Neurologist whom seems to think I have SFN after I told him this is what I feel I have. He now tells me he always thought I had it but why didn't he tell me that before I had surgery! He's running more blood test and another skin biopsy. I get the feeling that he doesn't want to be bother with me. I've also been seeing a pain specialist doctor that is trying his best to manage my pain but I'm very sensitive to medications. I'm taking 50mg of Lyrica 2 x daily and Low Dose Naltrexone (LDN)
2mg once at night. I've been blessed that I can sleep though all this. I also have lumps under my skin in my legs, arms and one in my neck which I had check by a dermatologist who sent me to a surgeon. The surgeon said it was a lipoma and there's nothing to worry about but I told her the pain in the lumps feels the same as the pain elsewhere in my body. I really do not know what to do, I feel like the doctor's are giving up on me and think I'm insane or a hypochondriac. I do not have Fibromyalgia or Sjogren's. The LDN seems to help but I just started it and its' not FDA approved to treat pain.
Has anyone used LDN for SFN? If you go on there website it seems to help a lot of chronic pain. Here's their websites if anyone would like to learn more:
ldnscience.org
ldnresearchtrust.org
I never heard of the Protocal 525 I'm skeptical of vitamins and I take 2 aspirin a day for another condition so omegas 3 seems to give me very large dark bruises. Does anyone have any other advice for me? I feel lost and afraid of what my future will be.
I thank God for everyday. I'm so thankful that I found this support group.