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  • Process of being diagnosed with Small Fiber Neuropathy....

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    Old 11-26-2011, 04:12 AM   #1
    PalesAngel's Avatar
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    Unhappy Process of being diagnosed with Small Fiber Neuropathy....

    My Neuro just diagnosed me with SFN. And I'm totally confused about it.

    Ok I've read most of the posts on this and am still scared "poopless" aside from the chronic constipation.

    I've had so many blood tests done in the past month, my hands and arms look like a really bad IV drug user who couldn't find a vein.... lol

    I have a lot of the "typical" symptoms, burning/tingling that started in my right foot, and up to my knee and now is in my left foot and up to my knee... so both legs..only my right hand.. which you could draw a line to split out my ring finger and my pinky finger up to just past my wrist goes numb/to sleep for no apparent reason. A wrinkle in the bottom sheet on my bed can wake me because it is so uncomfortable. Right now my reg dr put me on lido patches and percocet to help control the pain and discomfort. The lido patches help a little bit.. I try to take as little of the percocet as possible for fear of addiction, and I HATE feeling 'zoned'. I have a lot of weakness and fatigue.

    I have had MRI's no pinched nerves, no signs of MS, and honestly they look fairly clear, all my vitamin levels were good except Vitamin D which now I take supplements. Thyroid is being checked again (which has been 'normal' every time it is checked), CBC is being checked again, (always been with in 'normal' range with only slightly elevated white bc count but still 'normal'), blood tests for lupus and rheumatoid arthritis are being done, not an alcoholic, not a recreational drug user. Hormones were low at one point but not any longer with medication. About 2 years ago I had glucose tests done, fasting and non fasting.. everything was with in 'normal' ranges.

    Is there any information/advice someone can give me on this?

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    Old 11-26-2011, 10:20 AM   #2
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    Re: Process of being diagnosed with Small Fiber Neuropathy....

    Hi PalesAngel,
    Lots of us here have SFN as our diagnosis too, so this is a good place to come for help and support.
    Do you know the cause of your SFN? Mine is auto-immune-related to my rheumatoid arthritis.
    I can appreciate how you feel about getting this diagnosis, as there isn't much published help out there. It took 2 neurologists and 2 rheumatologists to finally come up with the diagnosis for me. There are many things you can do to help alleviate the pain and numbness. I have tried a lot, but others will also have more things that work for them.
    Warm baths are helpful. Proper footwear is imperative!!! Never, ever go barefoot.
    Check to see if you are getting enough Vit B12, others on this boards have more information on that. I exercise in warm water which really helps me.
    If you are taking narcotics it is critical that you use some kind of a bowel regiment to prevent constipation.
    I have spent 6 years trying to make this "go away" but I now realize that I will have to live with it indefinitely. It has been quite a journey to get to this point of acceptance and the changes it has brought to my life and lifestyle.
    Having a positive attitude goes a long way to helping in the journey. I hope you had a net work of people to support you.
    Do as much as you can, but rest often. Proper sleep is a must!!
    Because I have no perception of where my feet are anymore, I use a cane. But I made sure it was a funky one!! No more high heels for me, but that doesn't mean I can't still dress with personality- just the shoes have flatter heels now.
    A lot of people ( me included) are so scared of the addiction to pain meds that I used too little of them so that I wouldn't get addicted. But I didn't' get pain relief so ended up being frustrated. if you investigate the facts, you will see that very few chronic pain patients get addicted to the meds. They will be dependant on them, as their body is used to having them, but once the pain is gone, the need for narcotics is gone, and you can be safely be weaned off of the meds. Trying to find the right combo of meds can be a real pain but in the end it will be better if you have the right mix. Unfortunately there is no one "fix all" pill.
    I really wish you luck on your journey with peripheral neuropathy. This is a very good place to come for advice and support. We all learn from each other!!!
    My very best wishes and hopes for some pain-free days!

    Old 11-26-2011, 08:36 PM   #3
    PalesAngel's Avatar
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    Re: Process of being diagnosed with Small Fiber Neuropathy....


    I'm hoping to get my results this coming Friday from my neurologist, he thinks it is probably Auto-immune related but doing tests to be sure. I'll check and see if my Vit. B-12 has been tested, they've done so many tests I don't know what I've been tested for any more lol.

    I think since my neuro gave a name to my pain and validated it, my body has been in over drive trying to make sure I remember EVERYWHERE it hurts.. I was always a good one that could dismiss it as something I did or something that was not important... (can you say denial lol) I finally got to the point I was sick and tired of being sick and tired.... and my WONDERFUL husband insisted I go in to the Doctor to be checked. (I know he insisted because he was really worried about me). In the past 5 years I probably have had strep throat over a dozen times and maybe felt a "tingle" in my throat 4 or 5 times of those.. well until the ENT specialist said.. "those have to come out..." to my tonsils.. earlier this year.(By the way.. if you are over 40 and someone says.. your tonsils need to come out.. make sure it's not an option... because that hurt worse than child birth lol) And honestly that kind of pushed the whole weakness, fatigue and pain even further.. and been going down hill ever since. So I'm sure I've been with SFN for a while, just been in denial and attributing it to something else..

    I will let you know what they say.. thanks for your support.

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