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    Old 04-02-2009, 06:29 PM   #1
    will54
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    Small Fiber Neuropathy

    I take several medications that at the moment take a lot of the pain away but not all. When I get more pain than I can bare, I fall back on a pure pain reliever. I try not to take this very often so that it doesn't lose it's intended effect.
    Other background, I work daily as a warehouse manager, Monday thru Friday and this is another reason that I don't take very many of my backup pain medications during the day. I feel very lucky to be able to continue to work on a daily basis with SFN as I have read where so many can not. I also have an understanding wife who hates to see me in pain and knows that if I was able to do something today I might not be able to do it tomorrow. I will say that my SFN is gettng worse and the level of my medications is continuing to rise. My neurologist has told me that my condition will continue to get worse. Here again I am lucky to have a neurologist that understands and treats SFN.
    I have had SFN since 2006 and it is dx as idiopathic. I do not have diabetes though I have had a TIA stroke back in 2003 and several shoulder surgeries in the past several years.

    Will

    Last edited by Administrator; 05-03-2009 at 01:13 AM. Reason: do not use the boards to journal or as a diary.

     
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    Old 04-06-2009, 04:54 AM   #2
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Will, the hip thing could be sciatica. I have had it before I got SFN. It was caused from driving to my job(2 hours a day). There are exercises you can do to help. I have been sick with upper respiratory problems since last thurs. and that always effects my SFN. I know I have asked this before but since there are new people I want to ask again. Last night after being on my feet too long they turned reddish purple, look swollen, and burn. Does anyone else experience this? I was told it is called erythromeglia and there are articles that connect this and SFN. Have a good week.

     
    Old 04-16-2009, 01:24 PM   #3
    daisymaegrl
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Hi all,
    I too have been suffering with more extreme pain than usual but nothing like your "pain flashes" Will! I am counting the days until I see the Diabetic doc and my Rheum- all on the same day! I am not sure how I will make it 5 more days! There is absolutely no point in seeing my reg doc as she just says there is nothing she can do for me. My feet have gotten worse since I stopped the Cymbalta and all other meds. I won't take anymore antiseizure meds because of my extreme withdrawal from Cymbalta (which I can no longer afford) and it scared the pants off me.
    Has any one ever had to go to the hospital because of the pain?
    My husband really wanted to take me there last night as I was crying in so much pain. I am not so bad if I just stay on my feet, but the minute I sit down or lie down, the pain intensifies to the point where I don't know if I can stand up again.
    Just a really, really bad couple of days!
    Thanks for listening

     
    Old 04-27-2009, 09:00 AM   #4
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    Re: A Day In The Life Of Small Fiber Neuropathy

    I will tell you from my experience the only pain reliever thus far that has worked is vicodin, plain and simple. Where i am they are extremely difficult to obtain . I am extremely careful with them because they are addictive...but let me tell you, i will take whatever I have to to reduce the pain. I also know from numerous sources that many people take oxycontin, morphine, etc to help with the pain. I believe it is a real possibility that one day i will have to consider those as well...but today, i am still too afraid!

    Last edited by Administrator; 05-08-2009 at 01:18 AM.

     
    Old 04-27-2009, 11:14 AM   #5
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Aussie - Thanks for your welcome. Wondering what meds you are taking/have taken and how effective they are for the pain.

     
    Old 04-30-2009, 12:53 AM   #6
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    Re: A Day In The Life Of Small Fiber Neuropathy

    have you tried lyrica i am on it for neuropathy and fibro myalgia i couldnt stand the neurontin and was on the cymbalta i became immuned to that quickly i hope it helps

     
    Old 05-01-2009, 07:29 AM   #7
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    Re: A Day In The Life Of Small Fiber Neuropathy

    I take lyrica along with 2 other drugs for the neuropathy. Within a week of being on lyrica my pain had decreased by at least 50%. I hope that you are starting out on a low doseage and working up. I started out at 75mg 2x a day but as your body gets use to the drug it is neccessary to increase the doseage. I have been on lyrica since jan. 2007 and now take 200mg 2x a day. Alot of us want to give up on the medicines too fast b/c of the side effects so give it at least 2 weeks. One thing that has helped me with the lack of energy is getting a B12 shot each month. I was very surprised and pleased with the result.

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    Old 05-01-2009, 08:15 PM   #8
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Hi,
    I am new here I have had pins and needles in my feet with numbness and burning of my feet and legs at night for nearly two years. I was sent to a neurologist and he suggested it was possibly early onset diabetic neuropathy or lower spine damage. I am pre-diabetic with insulin resistance so naturally my docs just ignored it. Unfortunately it has now spread to my left hand with the left and second left finger numb nearly all the time.
    My gp treats me like a hypochondriac though I'm dammed if I know how I faked st3 Colon ca(12 yr survivor)pancreatitis,gall bladder removal,kidney stones and FSGS which is scarring of the kidney filters,most likely from years of fleet prep for colonoscopies.
    The nephrollogist treating my kidneys got the dx wrong first up and had me on 75 mg daily of prednisone for over six months. it didn't work and it took 3 mos to wean off it. The FSGS is now being controlled ,no cures possible,with four blood presssure meds. When I came off the pred I had a massive auto-immune arthritis flare. Bone scans showed inflammation in nearly every joint,even my jaws. I cannot take nsaids because of my kidneys. My rheumatologist has tried me on sulphasalazine . I was only on one tablet of the build up to six and I had Diahorreah so bad I thought I would pass my intestines. I was immediately taken off sulph and built up to 20 mg weekly of methotrexate. It is just like being on chemo again with tiredness and nausea. I was given folic acid then leucovorin for the nausea. Neither has helped nor has the meth. I am in constant pain and the only relief I can get is with paracetemol with codein. I take two tablets a day just to get to sleep without the pain waking me. The rheumatologists does not seem to care about the neuropathy and has so far ignored it. I am 59, live alone and still work. At times I worry that I will have a fall and not be found. If the neuropathy spreads to both hands I don't know how I will be able to work. I repair sewing machines and I have already had to give away the industrials because I can not get screws undone.. People just do not realise how much decades of ill health and constant pain wear you down. I don't expect the doctors to help I really think they get their money too easily...They don't have to fix anything to still get paid ...pity their payment is not productivity based... Talking on this board will not help my pain but at least it allows me to vent,,thanks for listening ,,Ron.

     
    Old 05-01-2009, 08:52 PM   #9
    daisymaegrl
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Hi dunno, welcome to these boards! I too have similar problems, though not quite as severe. I was diagnosed with RA 17 years ago, went through colon ca and had my colon removed in '96. I am also prediabetic and insulin resistant. I have been on methotrexate for over 10 years now. 5 years ago I started to develop burning, tingling, shooting pain in my feet and hands which has progressed to the point where I had to quit work as I also had a job that required manual dexterity. I am unable to stand or walk properly as i have numbness and extreme pain in my feet. I now walk with a cane as I a trip and fall a lot. Neither the Rheum or my family dr nor the neurologist seem to unduly concerned with my constant pain and disappearing quality of life. I was diagnosed with SFN and have had many different medications, none of which has been much help. There is some questions as to the cause of the SFN. It may be prediabetic, effects from the methotrexate or the RA. No one knows for sure. This is a great place to learn what others are doing to fight this disease and to come for information and support. Please feel free to share or vent, we are here and together we may one day overcome this!

     
    Old 05-02-2009, 05:19 AM   #10
    Bobby Flay
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Quote:
    Originally Posted by anwise67 View Post
    doodlebugsnana, I take lyrica along with 2 other drugs for the neuropathy. Within a week of being on lyrica my pain had decreased by at least 50%. I hope that you are starting out on a low doseage and working up. I started out at 75mg 2x a day but as your body gets use to the drug it is neccessary to increase the doseage. I have been on lyrica since jan. 2007 and now take 200mg 2x a day. Alot of us want to give up on the medicines too fast b/c of the side effects so give it at least 2 weeks. One thing that has helped me with the lack of energy is getting a B12 shot each month. I was very surprised and pleased with the result.
    As I had stated in my previous post, I have been diagnosed for 6 years but have been dealing for 10 years, a lot longer than most people on this forum. I started on Lyrica 75 mg daily then went up all the way to 200mg twice daily. Since my illness has gone on so long, it really never helped much. I recently went on Neurontin from Lyrica because of the cost and my fear of losing my job in an unstable economy, but because of my SFN. Needless to say, I was on Lyrica for 6 years, never gave up on it. Neurontin is cheaper.

     
    Old 05-02-2009, 05:32 AM   #11
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Quote:
    Originally Posted by belinda1317 View Post
    I was reading your post and agree about the depression. I am so fortunate to have a sister who has this disease and we each have the other to understand the pain and to troubleshoot with, lean on, and commiserate with. That, plus this board! Guys, I am telling you all...i reached a point of pain that had me so depressed i honestly could not foresee myself continuing to live with it. I did finally get on some anti-depressants, and while it doesnt help the pain at all, it does help me to cope a lot better (most days!).
    I want to thank you for sharing that, it was very brave. I can't tell you how many times I have started making a plan to do just that. I recently quit this board because I just could not deal with it any more.



    deleted


    keep leaning on this forum. It is truly a relief knowing that someone in this world actually understands for real. I have been where you are talking about. I have been there several times in the last couple of months. That is the thing about this illness. It is hard not to think about it because the pain really is that bad and if nobody believes what you are saying than you know you are going to continue with this unbearable pain.

    I strongly suggest seeking a counselor who is willing to work with you. I started seeing one about 3 weeks ago because like I said, it had gotten that bad and that close to ending it. She is working with me on some ways to deal with the pain that don't have to do with narcotics. Don't get me wrong, I could not get along with out my narcotics and have no intention of giving them up but there are times, like



    deleted


    when I am driving my kids around, that I just can't be taking narcotics. Also, working with me on the depression in general. I have always seen this as a sign of weakness in folks that go to counselors but had finally figured out that it is a sign of bravery and strength. My family could't live without me and expecially my kids. I can't imagine them being alright without a mom and I need to think about them instead of myself all of the time.

    Keep writing and don't give up, this form is a life saver.

    Bobby

    Last edited by Administrator; 05-03-2009 at 01:11 AM. Reason: inappropriate comments

     
    Old 05-02-2009, 10:05 AM   #12
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    Thumbs up Re: A Day In The Life Of Small Fiber Neuropathy

    Quote:
    Originally Posted by Bobby Flay View Post
    As I had stated in my previous post, I have been diagnosed for 6 years but have been dealing for 10 years, a lot longer than most people on this forum. I started on Lyrica 75 mg daily then went up all the way to 200mg twice daily. Since my illness has gone on so long, it really never helped much. I recently went on Neurontin from Lyrica because of the cost and my fear of losing my job in an unstable economy, but because of my SFN. Needless to say, I was on Lyrica for 6 years, never gave up on it. Neurontin is cheaper.
    Hi everyone,
    I'm new here. Just got back from the Cleveland Clinc yesterday (second visit). Was diagnosed with SFN and of course polyneuropathy. I have problems with both hands and both feet and am starting to have facial symptoms (forehead and nose). The right side is worse than the left at this time. I am returning for further evaluation in a few weeks. I have burn thru pain in my right hand ( the hot poker feel on the top of it) and it gets worse with repeated use.
    Does any one else have more problems when you repeatedly use the affected limb?
    I am taking neurotin, 1200mg 3 times a day and am still getting burn thru so I guess at some time it will have to changed.
    Anyhow, just kind of rambling on this first post - very glad to find a place where people understand firsthand.

     
    Old 05-02-2009, 10:46 AM   #13
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Thanks to all who have responded to my previous post and to all who have shared their experience in the last few days. Welcome to idunno and kevin 57. This board helps a lot to feel less alone and to know others don't get much care from their neurologist. We are not wacko hypochondriacs. I am in minimal pain right now, especially compared to other's experience, but am trying to get through the fogginess and other effects of taking gabapentin (300 mg 2/day). Has anyone experienced better results with Lyrica over Gabapentin? I started on Cymbalta about a week ago too, but think my bad effects are from the gabapentin. I tried not taking a sleeping pill last night (Temazepan) and got little sleep, not because of pain but my brain seemed to be getting flashes of unconnected images and my shoulders and feet would jerk periodically. Kevin 57, I don't find that repeated use of a hand or foot has any effect. In fact, for me, so far, walking is not any more painful than just sitting (maybe because I think about the pain when sitting?). Does anyone else feel this way about sitting vs walking?

     
    Old 05-02-2009, 01:35 PM   #14
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    Re: A Day In The Life Of Small Fiber Neuropathy

    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!

     
    Old 05-02-2009, 01:59 PM   #15
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    Re: A Day In The Life Of Small Fiber Neuropathy

    daisymaegrif - Have you tried Temazepam for sleep? My PC prescribed it for me and said it works for some and not others. It really worked for me (15 mg). It's supposedly not intended for long term use, but my PC had no problem with that. It doesn't leave you groggy the next morning.

     
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