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    Old 05-02-2009, 07:48 PM   #16
    Join Date: May 2009
    Location: perrysburg, oh usa
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    kevin57 HB User
    Re: A Day In The Life Of Small Fiber Neuropathy

    Originally Posted by daisymaegrif View Post
    Hi all, yes my pain is much more severe when sitting or lying down. I think that when I am moving about my brain is engaged in other things rather than thinking how bad the pain is. My worst times are at night when I lie down as my situation is complicated by RA and one of the hallmarks of RA is "gelling" and stiffness after resting. So the two combined problems make nighttime dreadful! The pain constantly wakes me up in the night and thus begins the cycle where little sleep equals less pain tolerance. More pain, less sleep, and on and on on it goes!
    I also have trouble sleeping or getting to sleep. First, I have involuntary shoulder jerks and side jerks. I have had them repeat up to 12 times in a row on my entire side, from ankle to shoulder. Do not know if this is related to this condition (small fiber neuropathy). I also wake up when the last dose of gabapentin wears off (1200mg per dose).

    When I earlier asked about repetitive motion causing more burn thru pain, here is an example of what I meant - I am a machine designer so I am constantly using my index finger to click my mouse at work to do my job on my 3d cad.

    I have dealt with the hand problem for 2-1/2 years and all of the sudden (within 6 mos.) it went to my feet and left hand.

    Does anyone else have the pain vary with the temperature changes.

    Thanks to everyone for their understanding. I hope that everyone finds some kind of acceptance with this disease and works thru it to a physically and mentally stable level of existence.

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    Old 05-02-2009, 07:56 PM   #17
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    Location: Albany, NY
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    Smile Re: A Day In The Life Of Small Fiber Neuropathy

    Hi all, I am so glad to have found you. I have read through all the messages. I know I was tired at the time but I don't recall anyone talking about the pain that comes with the coldness. Last August I started with a painfully cold left hand. Within weeks both hands and forearms were cold. My feet and calves are also cold. Does anyone else experience this? I hate being cold, but the fire makes me feel ill - lightheaded and nauseaus. Thank goodness I get the cold more than the heat.

    I don't have diabetes. I do have celiac disease and Hashimoto's thyroiditis. I recently had skin biopsies - one at the ankle and one at the thigh. The results confirmed small fiber neuropathy. It also confirms autonomic neuropathy. My body temperature swings some days. I usually run around 97.3 degrees. One day it was 95.1 and there was nothing I could do to get warm. The last spell the temp was 96.3 and then dropped to 95.9. Anyone else so afflicted?

    I have a problem with drugs. I was seen every three months, fed lortabs, lyrica, topamax, and told I was an enigma in a conundrum. All that did was get me hooked on lortabs, allergic reaction - laryngeal edema - to lyrica, and topamax literally sent me out of my mind. The times of withdrawal were horrible. I can't take NSAIDS. Celebrex - my brain must have thought I was a teenager as I had suicidal thoughts and had to get off of that. Ultram does a number on my stomach which already has a problem.

    I am able to use lidoderm patches for pain and that's about it. I take baclofen for spasticity and klonopin for myclonic jerks and lunesta to sleep. I have heart problems - SVT, PAT, PAC for arrhythmias as well as coronary artery disease, carotid artery disease, and PAD.

    I have been on crutches for four years - bad feet, bad balance, and lots of falls got me there and keeps me there. My right foot has had three surgeries for the same thing and is most unhappy 4 months after the last surgery.

    I was interested in reading about fatigue. I do have a definite energy problem. Exhaustion can come on quickly and far too easily for my liking. Is this part of SFN? I was dx with fibromyalgia in 1985 and at this point I don't know if I have it or not due to all the problems I have. I will be seeing a movement disorder specialist in NYC in a few weeks probably for some form of dystonia.

    Thanks for all the information I have learned from you and I look forward to learning more. My apologies for the length.
    It is the sick person who really knows what health is.

    Old 05-03-2009, 12:50 AM   #18
    Bobby Flay
    Join Date: Mar 2009
    Location: Elkhart, IN
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    Bobby Flay HB User
    Re: A Day In The Life Of Small Fiber Neuropathy

    Isn't it an awesome feeling knowing that you are not alone and even though your doctor might think you are crazy, your not? Feather me, pretty much every one has had the pain with cold or sometimes even hot weather. I guess the SFN #2 forum filled up and so this new one was started. Look back at that one if you get a chance because lots of folks talk about the temperature changes in relation to their pain. Fatigue is a huge part of it, I seldomly go a whole day without at least a two to three hour nape. For some reason, my husband gets furious about me taking naps and my kids can't stand it either. I look so forward to those uninterrupted naps, too bead for summer break! Anyway, it is usual for me to take my kids to school in the am, come home sleep until my husband wakes me at lunch, go back to sleep until I have to pick up my kids.

    Drug problem, I say get over it. This disease is an extremely painful one, for the rest of your life usually. I think being addicted is a fact of life with this and that is also what we usually tell patients, at my hospital and what my neurologist also has told me. I think it is better to be addicted than to have all of the horrible side effects that pain can cause.



    Last edited by Administrator; 05-03-2009 at 01:09 AM. Reason: disallowed subject

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