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Old 08-07-2008, 12:34 PM   #1
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Is small fiber neuropathy prgressive?

I was just diagnosed with SFN. I was wondering if this is a disease that progresses as you get older? I would love to hear from some people who have lived with this for a long time and want to get a handle on what to expect in the future.
Thanks,
Barb

 
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Old 09-17-2008, 09:32 PM   #2
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Re: Is small fiber neuropathy prgressive?

I don't know the total answer but I do know that it started with cold feet, moved up to my shins, then to my hands, forearms , and now my upper arms.
The cold increased in intensity as well. It can be very painful. It alternates with extremely painful burning. I have also experienced it in my chest.

I find it quite frustrating. I'm on a low dose of topamax. Tomorrow I double it and I hope it makes a difference without adding any side effects. I can not take any pain meds other than lidoderm patches. This has all happened in the last two months.

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Old 12-02-2008, 06:38 AM   #3
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Question Re: Is small fiber neuropathy prgressive?

I have been diagnosised with SFN for about 1 year ago, I can say though that I have been living with the condition for more than 3 years. I can't say my self if it has been getting worse, but I know that my body continuesly gets immuned to the pain meds, which is about the only thing I have been able to take, for all the other meds they say are good for SFN, only make my headaches that I also suffer from, worse. I have how ever, been trying the IVIG of Gamnex to try and help with the pain. I have 5th treatment of IVIG the week end before Christmas. As of right now that is not helping either, but I am trying to work up to receive 150g over three days, which is what the doctors would like for me to recieve. If anyone else has some information about the progression I would also like to know.

Last edited by ppanther14; 12-02-2008 at 06:42 AM.

 
Old 12-02-2008, 09:20 PM   #4
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Re: Is small fiber neuropathy prgressive?

Hello,

I was diagnosed with small fiber neuropathy last January. My Neuro believes though that it has been affecting me since I was 14. I am now 32. It has been a long road to finally getting that diagnosis for me and many doctors gave up and I gave up on many of them due to their stupidity. I have many symptoms that don't fit with this problem and as a result it had never been looked into before as well as the fact that my current neuro, thinks that there is other problems waiting to show their ugly heads in time. Unfortunately!

As for the progressive part of this disorder I would give that a definite yes from personal experience as well as from the research I have conducted. At times I have been so debilitated I could not even move, let alone walk to save my life. I could not even lift a spoon to my own mouth due to the shear pain and exhaustion. But again I believe I have other things going on as well. For me they never could figure out any specific cause, which limits the possible choices of medicines the doc willing to give me unfortunately.

Every day I still live with a level of 4-5 for pain on average but that can spike at any time. Not having practically any normal sensation in my skin that I can trust as a real sensation takes a bit to get used to to. As a science teacher I joke around with my students that I could light my self on fire or something and not even know it were it not for the smell! HEHE Not quite that extreme but you know what I mean.

GE

 
Old 12-04-2008, 08:14 PM   #5
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Re: Is small fiber neuropathy prgressive?

Hello Barb,
I've had SFN for two years now. It came on very suddenly with symptoms from head to feet, all at the same time. My neurologist has told me that it will progress and that it will be a life long problem. It has been progressive over the past two years.
Good luck with your symptoms.
Will

 
Old 12-05-2008, 04:39 PM   #6
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Re: Is small fiber neuropathy prgressive?

Well, that wasn't exactly what I wanted to hear. It certainly is a challenge trying to get a doctor to do something. I've twisted a neurologist's arm to get a skin biopsy. I was urged to do so for a couple of reasons. The first is they ( the doctors) don't take this seriously. The pain in my hands, whether they are cold or hot, is about a 5. It does spread upwards, at times, to my shoulders and chest, sometimes to my head.
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Old 12-05-2008, 04:39 PM   #7
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Re: Is small fiber neuropathy prgressive?

Well, that wasn't exactly what I wanted to hear. It certainly is a challenge trying to get a doctor to do something. I've twisted a neurologist's arm to get a skin biopsy. I was urged to do so for a couple of reasons. The first is they ( the doctors) don't take this seriously. The pain in my hands, whether they are cold or hot, is about a 5. It does spread upwards, at times, to my shoulders and chest, sometimes to my head.

What do some of you take for pain?
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Last edited by FeatherMe; 12-05-2008 at 04:40 PM. Reason: Didn't get my question in.

 
Old 12-08-2008, 11:36 AM   #8
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Re: Is small fiber neuropathy prgressive?

I have been on many different meds for the SFN but nothings seems to completely remove the pain. I started with Vicodine and worked my way through all the dosages because my body keep getting amunded to it, now I am on 90mg of avinza twice a day, Avinza is a slow releasing dosage of mophine. Along with that I also take 5mg ofoxicodine for the break through pain.

 
Old 12-11-2008, 09:47 PM   #9
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Re: Is small fiber neuropathy prgressive?

Quote:
Originally Posted by Gummybarb View Post
I was just diagnosed with SFN. I was wondering if this is a disease that progresses as you get older? I would love to hear from some people who have lived with this for a long time and want to get a handle on what to expect in the future.
Thanks,
Barb
I am wondering the same sort of thing. What may be down the road for me? I am having difficulty working ans wondering if I just need to suck it up and go back to work with slurred speech, slower reactions and the inability to walk from one end of the building to the other. To those of you who are able to work, how do you get through the day? I can barely stay awake and I'm experiencing sharp pains almost 80% of the time. The depression is unbearable with the uncertainty. I am a teacher out on leave. Will I get to return?

 
Old 12-12-2008, 06:14 AM   #10
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Re: Is small fiber neuropathy prgressive?

mopo623
I have been living with SFN for many years now but only diagnosted with it about a year now. I don't know if I can say the that it has gotten worse. I have been able to keep working during all this time, but have missed many days of work b/c of many doc's appointments and having to much pain to go in, or dealing with the side affects of different medications. About the only thing that I have been able to take is pain killers and a antidepressent to help me sleep. My body continuos to get annuned to the pain killer so I am now up to a time released mophine and codine for the break through pain.
So I am not sure if the pain or condition is getting worse or not, I too am looking for the answer along with most on the board to as does it get worse.
ppanther14

 
Old 12-12-2008, 11:06 AM   #11
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Re: Is small fiber neuropathy prgressive?

I am back working full time now, but I have a job that allows me to accomadate to this disease. By that I mean that if I am having a bad day then my boss understands that I will be spending more time in my office where I can regulate the temperature and minimize my walking. Before I was dx with SFN, I was out of work alot going to doctors visit and some days because I needed 14 hours of sleep. I have found that to have a semi-normal life with this disease you have to:
1. Get the pain to a bearable level. I went thru numerous trial and error cycles when I felt very hopeless about ever finding a good drug to control the pain. I am blessed today b/c I have found a good combo for me.
2. You have to get enough rest. Most of us know that is tough to do when you can't stand the sheets on your legs at night. That is where a good sleep aid can help. Why are we so hesitant to take a sleep aid b/c we are afraid to get addicted. Well I never like taking medicine and fought it for so long but then you realize that by not getting enough rest the pain is just that much worse.
3. Go through the process of grieving for the person you use to be then get help for the depression. I went through it and It was not easy. There were many tears shed but I finally realized that I have to accept what I have been given, both good and bad.
A couple other things to remember, you are protected by FMLA for 12 weeks and possibly the americans with disability act. Also, People who have neurological conditions that affect the distance(200 meters?) they can walk can get a handicap parking permit form filled out by their physician and take it to the courthouse. I hope that this may help? Allie

 
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