NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Small Fiber Neuropathy Answers Needed Please (https://www.neurotalk.org/peripheral-neuropathy/209071-fiber-neuropathy-answers-please.html)

Mrs.Redman 09-05-2014 02:43 PM

Small Fiber Neuropathy Answers Needed Please
 
I was dx'ed with small fiber neuropathy almost two years ago. My pain has spread and intensified in the last month. What I am looking for is some scholarly information about this disease. Everything I read or can find is very superficial concerning symptoms, treatments, etc. Specifically, I need to know if my pain is what is to be expected from SFN, or do I have something else going on. Knowing EXACTLY what and where the pain should be or is with SFN would really help my peace of mind.

I have been looking at the Fibro pages and am wondering if I have fibro with the SFN, or just SFN. I saw a Rheumy about 6 months ago and he said I did not have fibro, but since I have gotten worse, I am not certain he was right or if I have just progressed into it.

I have recently read (Googled small fiber neuropathy + Fibromyalgia) that some small studies have been done that indicate that some in the fibro study groups also have SFN, and that scientist/doctors are now wondering/testing (and surprised to learn) to see if they are related in some way. And, more importantly, is fibro a Nerve disease and not a muscular one? Knowing this would make all the difference in how both fibro and SFN is treated, and best of all, cured.

Let me say that I have scoured websites from Mayo, Cleveland Clinic, "reliable medical sites", NeuroTalk, some on the Healthboards, etc. and no one has answered me or given me some good information or where to find in depth information about small fiber neuropathy. I know about pain meds and what they do and don't do. There is plenty of information about that out there. I am really hoping the Mrs.D will read this and help me out, or anyone else out there being treated for SFN ONLY and can help me. Don't mean to sound grouchy, but you know how pain makes you feel sometimes. Thanks.

Chemar 09-05-2014 02:58 PM

Quote:

Originally Posted by Mrs.Redman (Post 1094376)
I am really hoping the Mrs.D will read this and help me out, or anyone else out there being treated for SFN ONLY and can help me.

Hi
Just wanted to let you know that mrsD is still away on vacation with very limited Internet ability so it may be a while before she can respond to you

mrsD 09-05-2014 03:32 PM

Thank you Chemar.

I can't link on this iPhone.
The bottom line today with the new
Research on Fibro that I heard from Dr.
Clauw's lectures is that Fibro is thought
to be a central pain disorder where pain
Signals become magnified and are interpreted
As severe. He mentioned triggers examples
As Rhematoid Arthritis, neuropathies, trauma
Including car accidents and surgery, and
Vaccine injuries. He also says there are
Genetic findings of it running in families.

I have links to him on that Fibro stickie
You visited.

I have seen on paper, i forget where
Connecting Fibro to misfiring nerve
Bundles.

There are many many things that cause
SFN. It is a very common disorder.

That is all I can post for now. Look on
The net for Dr. Clauw MD as he is on
Several Fibro sites.

glenntaj 09-06-2014 06:02 AM

And--
 
--I did post some links for you in the other sections where you have posted (the Useful Websites section of this Board, primarily):

http://neurotalk.psychcentral.com/thread177-8.html

madisongrrl 09-11-2014 10:01 PM

SFN in iTunes
 
Sorry I can't post the link, but two function medicine DCs have a podcast on itunes. Their website is *edit* They have done shows on PN, fibro, and SFN. Most recently they did a two part series about the recent research from 2013 that discusses SFN being the cause of widespread pain in fibro.

Kitt 09-12-2014 08:42 AM

Welcome madisongrrl. :Wave-Hello:

zkrp01 09-12-2014 12:00 PM

Not exactly
 
If you can find anything out exactly, you might be the first I,ve heard of. So many different symptoms for different people. So many different reactions to drugs taken for said symptoms. The best I can offer is only what I have learned. I know that overdosing on potatoe salad is not good for me as I flare up. Alcohol, same story. If you have been given pain meds, use them if you are miserable. I wish I had kept a journal of sympyoms and changes in them before and after other things that I tried. If you try too many things too fast, you will not know what is responsible for the change. Wish you accuracy and consice control in your journey, mine is lost to memory. Ken in Texas.

madisongrrl 09-13-2014 12:15 AM

Sorry I mean't to say "functional" medicine DCs. **.

And thanks for the welcome. I've been lurking for a while but I'll post my story soon.

JHop11 09-16-2014 02:46 PM

Quote:

Originally Posted by Mrs.Redman (Post 1094376)
I was dx'ed with small fiber neuropathy almost two years ago. My pain has spread and intensified in the last month. What I am looking for is some scholarly information about this disease. Everything I read or can find is very superficial concerning symptoms, treatments, etc. Specifically, I need to know if my pain is what is to be expected from SFN, or do I have something else going on. Knowing EXACTLY what and where the pain should be or is with SFN would really help my peace of mind.

I have been looking at the Fibro pages and am wondering if I have fibro with the SFN, or just SFN. I saw a Rheumy about 6 months ago and he said I did not have fibro, but since I have gotten worse, I am not certain he was right or if I have just progressed into it.

I have recently read (Googled small fiber neuropathy + Fibromyalgia) that some small studies have been done that indicate that some in the fibro study groups also have SFN, and that scientist/doctors are now wondering/testing (and surprised to learn) to see if they are related in some way. And, more importantly, is fibro a Nerve disease and not a muscular one? Knowing this would make all the difference in how both fibro and SFN is treated, and best of all, cured.

Let me say that I have scoured websites from Mayo, Cleveland Clinic, "reliable medical sites", NeuroTalk, some on the Healthboards, etc. and no one has answered me or given me some good information or where to find in depth information about small fiber neuropathy. I know about pain meds and what they do and don't do. There is plenty of information about that out there. I am really hoping the Mrs.D will read this and help me out, or anyone else out there being treated for SFN ONLY and can help me. Don't mean to sound grouchy, but you know how pain makes you feel sometimes. Thanks.

I just wanted to remind you that there are a lot of links between neuropathy and other diseases. It is important to note that there are clinical "checklists" for certain conditions, such as Fibro, or MS, or even kidney diseases, where you need to meet criteria to have a diagnosis. Some diagnoses can be made based off of clinical suspicion but Fibro in particular has a checklist with other "common presentations". Don't try to convince yourself you have another disease. It is better to speak with your doctor that you have a growing concern that your symptoms are getting worse.

Some people with Fibro can have neuropathy and Restless Leg Syndrome, but that doesn't mean that every person with RLS has Fibo, or that every person with Fibro has RLS. It's just a link. It's worth an evaluation or even a re-evaluation if you're concerned. Just remember that links are not causative. They are simultaneous findings that may occur more or less frequently with any two pairs of health conditions.

Hope that helps :)


All times are GMT -5. The time now is 09:31 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.