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Old 02-15-2009, 05:53 AM   #1
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will54 HB User
Small Fiber Neuropathy#2

I have SFN and wish to hear from others who have the same. My life has changed so much since SFN came along. It is now seemingly in every moment of my day. With all the pains, burnings, and stabbings that come with this disease, so does all the medications and their side effects. Because of SFN I have changed: the shoes I wear, the silverware (hurt my hands), and physical activities to name some.
As always, I'm not complaining, just stating the way things are. I have lived with SFN since 2006 and guess I will for the rest of my life.
Well, I've said enough for now, good luck to all coping with SFN.
Will

Last edited by Administrator; 05-03-2009 at 02:03 AM.

 
Old 02-15-2009, 06:18 PM   #2
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Re: Small Fiber Neuropathy#2

Hi there! I too have suffered from SFN since 2006 as well as RA for the past 17 years. My RA is somewhat controlled by meds but I never knew such pain existed until the SFN progressed from mildly annoying to taking over my life. It occupies my thoughts constantly and has changed my life in so many ways. I have lost the ability to enjoy my life in years where I should have so much to be thankful for such as my grandchildren. I had many fasting blood sugar tests that always returned as normal until I saw a neurologist that conducted the EMG test who ordered a blood sugar taken 2 hours after a meal. As a former lab tech I know this test is not ordered routinely like a fasting one.
The result came back as high and the diagnosis was pre-diabetes. I am doing what I can to overhaul my diet, lose weight and keep a positive attitude. No medications have helped yet and pain relief has not been offered to me, other than a short course of Tramacet that was as ineffective as smarties. Just to have support here means I am not going crazy, that there are others who suffer too. I would give the world to have a night of painfree uninterrupted sleep! Just dreaming I guess-thanks for listening! Peace

 
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Old 02-16-2009, 12:19 AM   #3
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Re: Small Fiber Neuropathy#2

Hello all, I am 28 yrs old and have just been diagnosed with postural orthostatic tachycardia syndrome and small fiber neuropathy. I recently graduated from law school and passed the IL bar exam, while all these terrible symptoms were developing. However, my pain and fatigue do not allow me to work full time. It has been a battle just getting a diagnosis - I wound up traveling to the Cleveland Clinic and am about to travel to the Mayo Clinic to find out what options exist for the pain associated with this illness. I've found it difficult to accept my current situation, am frustrated by the pain and the endless drugs that do not seem to work, and was hoping to get strength from you all. Thank you for listening in advance. Mike

 
Old 02-16-2009, 10:12 PM   #4
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Re: Small Fiber Neuropathy#2

Hello Daisymaegrif and Mike,
I'm glad to hear from you both and wish you the best in treating the SFN. My neurologist prescribed nortriptyline just a few weeks back. This is the only medication that I can actually say has made a difference in the pains. I just went to 100mg a day, one day ago. The doc and I are trying to see how much of this I need, or on the other side, how much I can stand. The side effect of this medication to me is dry mouth. I don't get ten feet away from a bottle of water, coffee, or tea at work. At home, it's the same. I did notice that I got a little "foggy" around 2pm today. That is one of the other effects I have noticed. I also take trileptol and mirapex, of which I would like to see if they can be reduced or stopped. I have tried several other medications without benefit. When the pains get too much I can take Tylenol #4's. This has been the only pain medication that takes the edge off the pains. I take them sparingly.
Well, enough for tonight. Good luck to all writers and listeners.
Will

 
Old 02-17-2009, 02:32 PM   #5
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Re: Small Fiber Neuropathy#2

Hi everyone, Will - you'll see that Zoey123 and I posted on the other thread (SNF Gang). One common theme amongst many sufferers is the ineffectiveness of drugs especially as long term solutions. If I could have a "do over" - it would be in the use of Neurontin. I might have been able to tolerate it or had fewer side effects at a lower dose. 900mg daily caused problems that I can only pray will resolve over time. To have neuropathy in ones head is just awful. And this I attribute to Neurontin. But there were many other powerful meds that preceded it - collectively they have left me with body twitches and tics, restless legs, and a host of other issues. I have an unfilled Rx for Nortriptyline sitting on a table beside me. Since it has only been 6 wks since I discontinued Neurontin - I cannot start this other drug not for a while yet. My neuropathy seems to radiate out from my spinal cord. Any exertion physical or mental - sets my system ablaze, to the point where I cannot see straight or speak. After 8 consecutive months of a long list of drugs, I only take Tylenol #3 - but I take it with reluctance over the impact it has on my liver.

I know everyone will agree there is no acceptable age or stage in life to be stricken with this pain syndrome. Western medicine has a role to play but I believe now based on my experience with meds, that there is merit to opening myself up to a wide spectrum of healing modalities. We are talking to each other here because there is something healing about being understood. We seek out each others counsel - can you imagine what it would be like if all sufferers were to congregate in one place? I've been benched with pain for only 8 months but I know that pharmaceuticals alone will not get me where I need to be. My body is broken as is my spirit, but I'm trying to open up to alternative healing strategies.

Last edited by 2morrow; 02-17-2009 at 07:30 PM.

 
Old 02-18-2009, 05:29 PM   #6
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Re: Small Fiber Neuropathy#2

All,

Couldn't agree more with regard to the ineffectiveness of drugs. Anybody have any luck with Cymbalta? It didn't do anything to me while I was increasing the dosage, but I have had some rough "rage" effects while I have been trying to ween myself off (the anger has thus far unfortunately been directed at my wonderful, and extremely understanding, wife). I am told the next step is going to be Keppra, but I am weary, especially given my reactions to Gabapentin and Lyrica (neither worked for pain, both had rough cognitive side effects). Oh well - hopefully I'll have some good news soon.

Best,

Mike

Last edited by mike623; 02-18-2009 at 05:31 PM.

 
Old 02-18-2009, 07:44 PM   #7
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Re: Small Fiber Neuropathy#2

Hi mike623 So far Cymbalta is the only medications that has helped me at all. Tried most of the others-Lyrica made me so stupid!! Neurontin could have been Smarties but at least Cymbalta took the pain down about 20%. I started at 30 mg but moved to 60mg in about a month and have been on it for 3 months now. So far I haven't noticed any side effects other than a decrease in appetite. The biggest effect I have noticed is that I am more able to handle the pain, tingling, burning and electric shocks in my feet in the daytime but night time still remains a long sleepless painfilled time. The one down side that I have experienced is that Cymbalta is extremely expensive in Canada.
I wish you luck as it all seems to be a very long and exhausting and costly search for somehing to help. Wish I could be more help! Peace!

 
Old 02-19-2009, 06:15 PM   #8
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will54 HB User
Re: Small Fiber Neuropathy#2

Hello to everybody,
Glad to read your writings,though sorry to read of your pains. My neurologist just increased my mirapex from 1.0mg to 1.5mg daily. Seems all of my meds are increasing lately. The cost of just two of the meds for a three month supply was near $ 1,000.00, and this was through the insurance pharmacy. I'm still below the deductable but gaining on it very fast. At last visit with the neurologist, he was thinking that I might have to move to Cymbalta as it is supposed to have less side effects than the nortriptyline. He said that Cymbalta is the newer version of nortriptyline with a lot of the side effects gone. He did say that it was a much more expensive drug.
I hope everybody writing and listening is doing as best they can.
Will

 
Old 02-20-2009, 01:20 PM   #9
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Re: Small Fiber Neuropathy#2

Hi! I just got the news that my skin biopsy confirms that I do have SFN. Just a call from the nurse, like she was telling me the time of day. I'm sorry, but this whole process of seeking out my dx. has left me baffled. Not even a call from the doctor. No explanation of what it really is. So I'm asking all of you who may know. Are the nerve fibers dying? Does any of the standard meds stop the process, or do they just treat the symptoms. Does any one else ever feel as if they are going out of their mind? I don't know how to do this? I'm so sad and discouraged. I hate the mind fog that all the meds put you in. Does other peoples pain move around in theie body. I have a foot so sore that I can't step on it. They stuck me in a boot cast and tell me it's unrelated. Does anyone else have a body part that seems worse than the others? I know I'm just rambling with questions...sorry. I will make my list and ask my doctor. I just want hope that this can be healed. I'm 48 and I can't imagine feeling this way the rest of my life. I was healthy one day and it came out of nowhere? How can this be?

 
Old 02-20-2009, 04:19 PM   #10
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Re: Small Fiber Neuropathy#2

Hi Dianne 04 and all SFN sufferers, Dianne, you have just asked all of the questions I want to know also. So far none of the 2 neuros, my Rheumatologist or my family MD has any answers and yes I feel like I am going out of my mind!! I haven't had any sleep because it hurts my feet so much when I lie down and just as much when I get up again! At least you have a starting point now that you have a confirmed diagnosis. I think eventually we all accept that the search to find a combination of medications that let us live easier with the symptoms is exhausting. This disease takes a lot of time and effort to investigate. Just be patient with yourself and make sure you get extra extra rest. I have had one acupuncture treatment and I do believe that it did help, but would need more than one and all that is expensive. If anyone does answer your questions, please let us know as I know I am eager for information!! Sharing is the only way we can help each other. Have strength and take it one day at a time! Peace

 
Old 02-21-2009, 06:42 AM   #11
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Re: Small Fiber Neuropathy#2

Dianne,
I am so sorry that you were told this news in this way. SFN is not "life threatening" so I think some doctors treat it like the common cold. They don't know what causes that either. Finding the cause of this is very important so if possible you can respond to that. I am sure that you have been told that 1/3 of all cases are idiopathic. I assume that you have had all the tests for the known causes. SFN is caused when small a and c fiber nerves have been damaged or destroyed. Did the nurse say anything about "focal branching"? This means that the good nerves are sending out new branches to help compensate for the dying ones. Did she give you your fiber densities? This tells you whether the neuropathy is proximal(thigh) or distal(ankle). Unfortunately the main thing doctors can do is treat our symptoms. However, I have not given up hope. I have had SFN for 3 years. At first I did not have any temperature differentiation in my legs but now that has improved. If it happens, it will be a very slow process. Dealing with constant pain can challenge our bodies and our minds. Don't be like me and shut out your friends. If I couldn't be the person I had been then I didn't want to be around people. You need everyone and now you do have a dx that the can look up and try to understand. Just know that we are all here to listen. Allie

 
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Old 02-21-2009, 07:03 AM   #12
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Re: Small Fiber Neuropathy#2

Anwise 67, Thanks for responding. No the nurse told me I had it. When I asked her what that actually meant, she said she would send me a flyer....I was flabbergasted! Well the flyer came and it just describes it in general terms. I'm seeing the doctor on Wednesday , hopefully I will get a clearer picture then. Plus I would like to see all my test results and have a copy...guess I'm a little skeptical. Yes I was screened for the usual underlying causes and they were all negative. Question, if you tested negative for celiac, is it useless trying to go gluten free. You get desperate and I really would like to get off this medication. I have already scaled back on the Neurontin. I take it only at bedtime with my Tramadol, Ambien and Remeron, so I can get that precious sleep. It's really nice to be able to talk with others who understand. I know this disease is not life threatening, but it is certainly life changing. I no longer feel like me, and I feel trapped in a body that I don't recognize. Thanks for listening

 
Old 02-21-2009, 07:06 AM   #13
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Re: Small Fiber Neuropathy#2

One more question, is having an occasional drink (glass of wine) a real no, no? I see that over consumpution of Alchol can be a cause...does anyone have an thoughts on this?

 
Old 02-22-2009, 08:36 AM   #14
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will54 HB User
Re: Small Fiber Neuropathy#2

Hello to everybody,
I always find your writings interesting and informative. You give me the questions to ask my neurologist and the answers. Though, as mentioned in the previous writings, SFN is not life threatening but it can kill your attitude and spirit. Not being able to put into words to describe this disease to ourselves, much less anybody else, is enough to drive you crazy. We ask ourselves if we really have a disease or is it just in our heads. What did we do to deserve what's happening to us? I have to tell myself often that SFN may hurt me but it will not defeat me. I will survive and go on living my life.
Everybody take care and good luck.
Will

 
Old 02-25-2009, 01:38 PM   #15
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Re: Small Fiber Neuropathy#2

Hi there everyone! I am almost at my wits end after another sleepless night full of pain. I am scheduled to see the neurologist on Fri and receive, I suspect, another round of pills to try. I tried Klonipin for the RLS but had a bad reaction and went to hospital for a day. I am only on Cymbalta now for the SFN but there has to be something else to try and what happens if NOTHING helps? Has everyone at least found a combination that works for them? I have tried Neurontin, Lyrica, Elavil, gabapentin, tramacet Klonipin and Tylenol 3's without success. I guess one of the most frustrating things is how long it takes to get an appointment to see each specialist.
Thanks for letting me vent!

 
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