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Small Fiber Neuropathy

Discussion in 'Support Subforum' started by winterhaven123, Jan 8, 2016.

  1. winterhaven123

    winterhaven123 Peer Supporter

    Hi I have posted several times in the past. Does anyone have Small fiber Neuropathy?? I have been in constant pain for 5 years now. Had every test possible as everyone else has. All the pain started 5 years ago in my upper abdominal. & spread throughout my entire body. I had nerve conduction Spinal Tap & skin Biopsy MRI catscans bone scans & more. Last stop was a neurologist I had to request my medical reports to be sent to my primary DR He said nerve conduction was positive for nerve damage & the skin biopsy confirmed wide spread small fiber Neuropathy. I never heard back from the Neuroligst. The thing i dont get about it why would I have no pain when I lye down. As soon as i stand the muscle & burning pain gets worse & worse. I see a Psychologist & a Psychiatrist All the Dr that i have seen said No cure, Gabapentin Tramadol Anti depressions Any in please let Me know IS Small Fiber Neuropatathy TMS?? I am not a diabetic I do have Major Depression & PTSD. I have read Many TMS Books & Yes I have been through the SEP program Please any advice
     
  2. Misha

    Misha Peer Supporter

    Hi there,
    I didn't know what Small fibre Neuropathy was so I Googled it and came across a lot of common phrases such as 'becoming more prevalent across American' and 'unknown cause' (except with diabetes), which seems to also be true for a lot of TMS conditions. Depression is linked to TMS, as an equivalent, isn't it? I don't know how nerve tests work but I know they are unreliable (I was diagnosed by one doctor with a nerve problem even though nothing showed on the tests because they are so unreliable apparently... so why do they do them!?). I am new to this and I'm sorry I can't be of much help, but maybe others can post. Good luck :)
     
  3. tgirl

    tgirl Well known member

    Winter haven sorry about what you are going through. Have you talked to your doctor about the neurologists results? It is strange that you feel better while lying down. What has the psychologist said?

    What was going on in your life when this all began? Has it ever gone away totally?
     
  4. winterhaven123

    winterhaven123 Peer Supporter

    Hi thank you for your reply Yes I talked to my Dr about the neurologist results this is how i found out the skin biopsy confirmed the small fiber neuropathy & the nerve conduction showed abnormal i have been tossed around for years about this pain. I never heard back from the neurologist for a follow up or the test results. I had to have my Dr order them. & He questioned himself as to why she never made a follow up. this is out of his hands. I keep asking why the pain stops when i lye down no one has a answer. Yes there was plenty of stress going on in my life when it hit. it hit all at once. just the slight touch or breeze would put me through the roof I have alot of big T Traumas that has happened in my life this is the PTSD & major depression. I just cant find much about small fiber Neuropathy & feel I have alot of TMS symthoms It crazy & constant. Thanks for your reply
     
  5. wannarun

    wannarun Peer Supporter

    Winter. For quite some time I thought I had SFN as well. I had all of the symptoms, but I could never get a positive diagnosis. I even had the punch test performed. Interestingly, mine would change when I was standing up vs. lying down as well. As I've worked through the medical system and TMS, I have found the treatment for TMS to be very helpful. The symptoms I think are very similar. It is hard to let go because you want to "solve" the problem. The best course is forgetting about it and setting your mind to something else. Trust me, I know harder done than said, but it is the only way I have found relief.
     
    Boston Redsox and tgirl like this.
  6. tgirl

    tgirl Well known member

    Wannarun, did you determine that in fact you didn't have SFN? Are your symptoms gone? Were you under stress?
     
  7. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, winterhaven. I'm not a doctor, but small fiber Neuropathy sounds to me like another trick of your subconscious to make you think about your emotions. Tests may eve show structural damage to parts of our body in pain, but Dr Sarno says the underlying cause may not be structural but psychological. Keep working on discovering what emotions you have that make you angry or upset.
     
  8. winterhaven123

    winterhaven123 Peer Supporter

    Walt I agree I have read alot of Sarno & everything He says about the feeling I have He wrote about The Burning, stiffness Muscle pain, I wonder if the difference in Standing & lying is a conditioned Response.
     
  9. winterhaven123

    winterhaven123 Peer Supporter

    Wannarun what were your symptoms & for how long did your pain start as soon as you stood up. burning muscle pain throughout your entire body weakness? I dont know how they could do a punch biopsy in the leg & say it widespread in my nervous system nerve conduction also was positive for nerve damage then i never heard back this was at USF teaching school in Tampa FL connected with Tampa General. where i had the spinal Tap also had brain Mri which were normal
     
  10. winterhaven123

    winterhaven123 Peer Supporter

     
  11. wannarun

    wannarun Peer Supporter

    I felt this burning sensation in my lower legs. I described it as a sunburn on the inside of my skin. It was mostly in my legs. They did the punch biopsy in my legs because that is where my symptoms were. I tended to feel better when I stood up. When I laid down on my side I would get a weird tingly sensation. It never made sense. I don't have it anymore. I wear socks and for the most part just have mild sensation in my feet. I think it is because I still think about it too much. I have difficulty with running because of fear. I'm getting better, but it is one of the last demons for me to tackle. I'm going to try a good go of it in the Spring. I was also crazy stressed out when all of this was going on.

    I found this one mind-body exercise very enlightening. It is called a body scan. Essentially, you listen to the various parts throughout your entire body. What I found was that when I focused on a specific part of my body, I could feel it more intensely. For example, I would think about my face and notice all of this sensation going on that I normally ignore and don't give any attention to. When a part of us is injured we focus and give all this attention to a body party, which normally wouldn't give us any sensation. Similar to the story of the boy bitten by the snake and now feels pain when a blade of grass passes over his leg.

    I would tend to agree with Walt that I think someone the standing is part of some conditioned response. I know for me I had this image of the disc in my back pressing on a nerve when I laid down and voila I have weird nerve stuff in my leg.

    Neuropathy doesn't make sense to me. Dr.s can't explain it and they just shrug their shoulders. The more I've learned about TMS the more I think neuropathies are just another type of TMS that Dr.s don't understand. I too am not diabet.
     
  12. Boston Redsox

    Boston Redsox Well Known Member

    I agree I am also non diabetic its TMS 100% NO DOUBT
     
  13. winterhaven123

    winterhaven123 Peer Supporter

    [QUOTE
    Do you have it severe widespread in many parts of your body. I am total disabled by it. 5 years of Hell Yes i must have alot of rage I have PTSD i have been through & seen alot it hit all at once unexpected
    ="Boston Redsox, post: 58970, member: 2470"]I agree I am also non diabetic its TMS 100% NO DOUBT[/QUOTE]do you have it widespread
     
  14. winterhaven123

    winterhaven123 Peer Supporter

    Its been 5 years I am totally disabled from it. I dont use the P word its a living Hell I have PTSD I have seen & been through alot I must be full of rage I feel no emotion anymore. How bad did you have it & are you cured?
     
  15. Boston Redsox

    Boston Redsox Well Known Member

    It's been over 5 yrs for me ...its wide spread mainly in legs and feet and sometime arm and hands..I have been using the tms approach to healing for the last 14 months and have not had much success ..because of my constant focus of the pain and fear.

    I am gradually letting go of the constant watch for pain or seeing how I am everyday basically I don't care anymore and the fear as stopped ...since then my pain as got more severe which I feel is a great sign.

    I am on a antidepressant and BP medication I am going threw a divorce and it's very painful
     
  16. winterhaven123

    winterhaven123 Peer Supporter

    I also take antidepressants also for major depression. It's always nice to find someone with similar P because I have been searching for a long time & haven't seen any post Similar to mine your is the first one but i have in different locations entire back upper & lower my right leg & Ribcage are the worst i am ok when i lye down its hard not to focus on it when it takes over
     
  17. Boston Redsox

    Boston Redsox Well Known Member

    Yes I agree it is tuff not to focus ....what anti are u taking and for how long ? As it helped
     
  18. winterhaven123

    winterhaven123 Peer Supporter

    I have tried many Antidepressants Currently I am taking Lexapro 20 mg I have treatment resistant So she added about 3 weeks ago. Leucovorin Calcium It's a Folnic acid. I researched it & its hard to find much information about it. It suppose to help with treatment resistant depression I haven't noticed change. I am hoping if I could get the depression & PTSD down Maybe i could get the (P) level down. I even tried approx 6 or 7 sessions of EMDR mo change
     
  19. Boston Redsox

    Boston Redsox Well Known Member

    What's EMDR? .....besides all your treatments what are u doing for fun?
     
  20. winterhaven123

    winterhaven123 Peer Supporter

    EMDR stands for eye movement desensitization Reprocessing it was developed by Francine Shapiro Its used for depression & PTSD & has been proven to work for many many people. I had no luck with it maybe i haven't gone long enough, It's hard to focus on 1 Trauma when there has been so many. Like Sarno say's some people become obsessed with there (p) & that would be Me it's totally holding Me back My mind has become Stuck in a horrible loop that's hard to break. I try to stay positive i pretty much now have become isolated which is the worst thing you can do but feel i have become out powered. I use to do anything & everything I loved to travel I spent the summers in upstate NY (Dutchess & Ulster county Area) I loved the Mountains, The woods hiking NYC. I had a good job in Vegas Moved to Fl & boom here I am. EMDR may work for you with your depression. it's something to try just because it has not for Me it;s helped many people with depression.
     

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