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  • Small Fiber Neuropathy#2

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    Old 01-01-2010, 08:14 AM   #106
    remark46
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    Re: Small Fiber Neuropathy#2

    so do I,it seemed to worsen durring Kemo,so I see a neorologist and after tests were taken he started treating the large nerve endings and now concentrating on the small. For the first time im in comand of my pain,not the other way round!

     
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    Old 04-29-2010, 02:50 AM   #107
    CheyenneW
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    Re: Small Fiber Neuropathy#2

    Hi,

    This is the first time I posted here. I have been reading this thread and have been compelled to post. First off, I have had this strange skin sensitivity starting with my arms--so sensitive to the point I cannot really wear anything with sleeves. This all started over 20 years ago and I was in my early 20's. I just remember the sleeves of my t-shirt rubbing against my arms and it really bothered me. 20 years later, it is much, much worse. I now get this what I describe as a 'burning ache' whenever I wear something with sleeves and I feel the fabric rubbing against my arms. This is pretty difficult to live with since when the weather turns cold, I have no choice than to wear sleeves. I find that the only types of clothing the skin on my arms can handle are those Under Armor nylon shirts and they have to fit snug. I usually wear a shirt over them since they are pretty tight. Sometimes, the skin feels so bad I cannot wear anything on it. Sometimes, this 'sensitivity' and burning ache spreads to my legs and back. It usually gets worse when I'm tired, hungry or pmsing. Cold weather and air-conditioning also aggravates it. It basically sucks and it has really taken over my life. I feel really depressed about it and yes, I do have a history of depression and anxiety. I currently take cymbalta since I have told my psy. about all of this. I don't think it is helping but it is helping with the depression, to a degree.

    I've been to the neurologist and I am taking gabapentin which seems to help--only sometimes. He thinks I have small fiber neuropathy. At first he thought it was fibromyalgia but I don't have the pain and the pressure points. While I am glad this 'thing' have has a name (as opposed to all in my head), I have got to find the correct medications and such in order to live with this. It really takes a lot of out of me and I get tired very easily. It's not like I'm in severe pain or dying but man, it does get me down. I try not to let it but there are times I get so tired of it.

    Oh, also, there was a span of time, about 5 years when I did not have this at all, about 10 years ago. It then came roaring back. Ugh.

    Last edited by CheyenneW; 04-29-2010 at 03:08 AM.

     
    Old 04-29-2010, 07:05 AM   #108
    dianne04
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    Re: Small Fiber Neuropathy#2

    Welcome Cheynenne,
    I do agree that you probaby have Small Fiber Neuropathy,,there may be an underlying cause, or in about 40% of us they just don't know, making it Idoipathic. It is very challenging, I'm in the same boat as you in that its over a good portion of most my skin, and not so much in my hands and feet. You are right it not excrutiating, but it's always there to some degree...it changes...it moves...it makes you feel crazy. I too now suffer with anxiety and depression, as much as I try to relax and stay calm and accept this condition, part of me wants to run away screaming "I can't do this" of course myself is always right there, so there is really no escape. There are much braver people here than me, but I want you to know you aren't alone. Hang in there. It's been 18months now for me with this new way of life, a body that feels foriegn to me. One day at a time is how to get through. I also hang onto hope that my body will figure out to heal.

     
    Old 04-29-2010, 10:42 AM   #109
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    Re: Small Fiber Neuropathy#2

    Thank you for your comments, diane. Yeah, sometimes it get worse and sometimes better. I will go a few days of feel okay and then 'bam'!, it's back. I noticed that it has progressed over the past few months. Clothes that I was able to wear a few months ago I cannot wear now. I am trying to be positive. At least I am getting answers to this. I went many years not seeking help for this thinking it was all in my head and I feared being told that, having to live with this. I guess I do have to live with it but at least there are medications I can try to help ease the symptoms. I am amazed at how many people out there have this--It doesn't make me feel so alone. Still, it is not a pleasant thing to have and I do not wish this on my worst enemy.

     
    Old 04-30-2010, 11:31 PM   #110
    Matchfoot
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    Re: Small Fiber Neuropathy#2

    Hi, I'm a newbie here! It's a Godsend to feel connected,despite our conditions, diseases. My diagnosis is chronic demyelinating polyneuro. My feet started to lose sensation, electrical pain shooting up both legs. Many docs mried, scanned and concentrated on just my lower back. So for 12 yrs, I had no name for these horrible attacks burning,stabbing. I thought I was nuts! I did have alot of scar tissue after 3 microdiscectomies, and a spinal fusion. Thank God my severe attacks happen a few days, or months apart. I have to deal with letting go of fear for what I know is intense agony. I researched alot. I discovered neuropathies due to demyelination and started to work on strengthening my immune system. I was dagnosed in 2006, and I had an EMG the other day and was told my cells and protein levels were not that advanced!! For me,whether it's placebo effect or what Alpha Lipoic acid helps with the tingling burning foot pain. All the other symptoms are still happening, but I'm hanging in. Thanks for reading. Val

     
    Old 05-10-2010, 11:07 AM   #111
    lady22trainer
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    Cool Re: Small Fiber Neuropathy#2

    Hi, I'm new to this and have read this board a few times. It's so comforting to hear others are feeling, thinking and burdened with the same issues.
    I was diagnosed with smallfiber neuropathy last year and have been dealing wih symptoms for a year and a half. I went from running half marathons, olympic tri and doing any activity I wanted to planning a day with what shoes I could wear (to stand the pain) and how long I would be on my feet. I feel like an "old" lady sometimes and am only 27.
    Working out was my hobby and escape. I struggle now to find happiness and accomplishment in something else. My faith, family/friend support, and counseling sessions have held me together. What do you do to keep your spirit up?
    I was diagnosed with depression and seemed to overcome it but have fallen again. I'm so frustrated and don't feel like myself. It's scary to realize you are not "you" anymore. I feel like this stupid SFN is holding me back in everything...my physical activity, my work, my personal life...even what I wear. What do you do??
    I'm have been taking Lyrica for a little over a year now and it seems to decrease the symptoms but is frustrating to take 3x a day :/ ...I'm just reminded even more of what I'm dealing with...not too mention pain with walking, sitting, laying down. I know others can relate and understand.
    I know there are so many other issues, diseased, illnesses that are significantly worse than SFN. I don't like having "pitty parties" for myself and try to be strong. How long can you hold it together before you realize the rest of your life may never be the same?...and that you may never be the same? That you life is controlled by this SFN. How do you break free from this mental bond that it puts on you? I feel so weak most of the time and angry with myself for for feeling weak mentally and physcially.
    What do you do to feel better? I'm trying to learn how to manage this mentally and physically. It seems the physical part that keeps bringing me down.
    Please help me with what you do
    Thank you!!!!

     
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