advertisement
Reply
 
Thread Tools Display Modes
Old 08-26-2015, 01:41 PM #1
Mrs.Redman Mrs.Redman is offline
Junior Member
 
Join Date: Sep 2012
Posts: 16
10 yr Member
Mrs.Redman Mrs.Redman is offline
Junior Member
 
Join Date: Sep 2012
Posts: 16
10 yr Member
Default Small Fiber Neuro PLUS Fibromyalgia

I haven't been on the site for a while, but need some help. I was dx'ed with SFN in 2012. I presented with the classic stocking/glove feeling in my legs, progressing to pain, muscle spasms and electric-like shocks in my legs, along with painful feet that can not feel vibration. Then my symptoms began to change, at which point I was scheduled to see my neuro specialist. In researching I believed that I had fibro since the SFN didn't seem to match the fibro symptoms. My specialist confirmed that they very often go hand in hand and agreed I had fibro as well. Here's my question: I want to know from those of you who have ONLY SFN what your symptoms are. I would like to compare them In that way I can determine what is causing my pain. I realize that everyone is different and I have researched every reliable site, including the noted Dr.Daniel Clauw, who is absolutely amazing. I do not have diabetes. I have some spine problems but was told none of them are bad enough to cause my pain, which is mostly in my upper thighs (right now, anyway) and it makes me feel very weak, though I am told it is "the perception of pain", meaning my muscles are strong; I just feel weak. Does SFN cause weakness. It sure feels like it cause all i want to do is sit down. Thank you to anyone who can help me. I am currently on 75 mg Lyrica twice a day with Flexiril at night to help me sleep. I want try Cymbalta next.
Mrs.Redman is offline   Reply With QuoteReply With Quote

advertisement
Old 08-27-2015, 06:10 AM #2
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
15 yr Member
Default Generally--

--small fiber neuropathy does not cause weakness per se, since the small, thinly myelinated and unmyelinated fibers are sensory and autonomic in function, not motor.

Given that, though, the sensory and autonomic disruptions can cause increased fatigue as muscles have to be used in different ways to compensate, and those might be interpreted as motor symptoms.

Since the small fibers do include pain receptors, there might be some overlap with fibromyalgia. Small-fiber sufferers generally don't have the pressure points that is associated with fibromyalgia, but many with either condition experience cramping.

There were a series of reports a few years back indicating that many people diagnosed with fibromyalgia may have small-fiber neuropathy in addition to, or instead of, fibro. (This may have something to do with the lack of consensus on just what constitutes a fibro diagnosis.) The following report was typical:

http://www.medscape.com/viewarticle/772864
glenntaj is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Mrs.Redman (08-27-2015)
Old 08-27-2015, 07:25 AM #3
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Default

I was diagnosed with both. They are just literal explanations of symptoms. With out finding the cause it doesn't even matter.
Fibromyalgia literally means muscle pain throughout the body and small fiber neuropathy/ or polyneuropathy means nerve damage that can also be anywhere in the body. So lots of pain and terrible symptoms, but no solution.
I think that pure small fiber neuropathy is mostly tingling, buzzing, numbness, and nerve pain, where as more invloved neuropathies cause weakness and tremor.
Fibro to me is such an end of the rope diagnosis that doctors use for people who are in terrible pain all over with many ailments who have clean blood work.
Healthgirl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
beatle (08-27-2015), Mrs.Redman (08-27-2015)
Old 08-27-2015, 08:16 AM #4
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Default

Quote:
Originally Posted by Healthgirl View Post
I was diagnosed with both. They are just literal explanations of symptoms. With out finding the cause it doesn't even matter.
Fibromyalgia literally means muscle pain throughout the body and small fiber neuropathy/ or polyneuropathy means nerve damage that can also be anywhere in the body. So lots of pain and terrible symptoms, but no solution.
I think that pure small fiber neuropathy is mostly tingling, buzzing, numbness, and nerve pain, where as more invloved neuropathies cause weakness and tremor.
Fibro to me is such an end of the rope diagnosis that doctors use for people who are in terrible pain all over with many ailments who have clean blood work.
My doctor told me Small Fiber Neuropathy is just a newer more specific diagnosis that they can make of the sickness. The skin punch biopsy has allowed them to do that. Years ago they would've simply called it paresthesia, dysesthesia or even mild fibromyalgia. I believe most neuros don't know the extreme pain involved with SNF as a result. Just treat the symptoms with supplementation and medicine if absolutely necessary. Key thing is, regardless eye on the future and eye on healing yourself.
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

Patrick Winter is offline   Reply With QuoteReply With Quote
Old 08-27-2015, 08:49 AM #5
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
Default

Quote:
Originally Posted by Patrick Winter View Post
My doctor told me Small Fiber Neuropathy is just a newer more specific diagnosis that they can make of the sickness. The skin punch biopsy has allowed them to do that. Years ago they would've simply called it paresthesia, dysesthesia or even mild fibromyalgia. I believe most neuros don't know the extreme pain involved with SNF as a result. Just treat the symptoms with supplementation and medicine if absolutely necessary. Key thing is, regardless eye on the future and eye on healing yourself.
Mrs. Redman: I have axonal nerve swelling discovered on a punch biopsy that the neuro and pathologist said was of "unclear clinical significance." The fiber densities were in normal range. However, the neuro has said that based on the type of symptoms I have and the widespread nature of them that I have a central sensitization syndrome. You can read my other posts if you'd like a full description, but I burn from head to toe and from inside out. I also have severe muscle pain and joint pain. But no diagnostic tender points typical of fibro. Fibromyalgia is a central nervous system sensitization; but you could have SFN too. In fact the prolonged SFN pain could trigger the central sensitization of pain. That's what they think may have happened with me. It's really hard when the best of the best doctors scratch their head about your case. Anyway, I've arrived at a place where THE PAIN IS THE DISEASE. It took a long time for me to get to that understanding, and it has helped me be open to more aggressive pain management.
heb1212 is offline   Reply With QuoteReply With Quote
Old 08-27-2015, 09:26 AM #6
Mrs.Redman Mrs.Redman is offline
Junior Member
 
Join Date: Sep 2012
Posts: 16
10 yr Member
Mrs.Redman Mrs.Redman is offline
Junior Member
 
Join Date: Sep 2012
Posts: 16
10 yr Member
Default SFN PLUS fibromyalgia

Quote:
Originally Posted by heb1212 View Post
Mrs. Redman: I have axonal nerve swelling discovered on a punch biopsy that the neuro and pathologist said was of "unclear clinical significance." The fiber densities were in normal range. However, the neuro has said that based on the type of symptoms I have and the widespread nature of them that I have a central sensitization syndrome. You can read my other posts if you'd like a full description, but I burn from head to toe and from inside out. I also have severe muscle pain and joint pain. But no diagnostic tender points typical of fibro. Fibromyalgia is a central nervous system sensitization; but you could have SFN too. In fact the prolonged SFN pain could trigger the central sensitization of pain. That's what they think may have happened with me. It's really hard when the best of the best doctors scratch their head about your case. Anyway, I've arrived at a place where THE PAIN IS THE DISEASE. It took a long time for me to get to that understanding, and it has helped me be open to more aggressive pain management.

Thanks for your input. I was dx'ed with SFN by punch biopsy after every imaginable test alive! (all negative, of course) Since SFN is so rare, this test wasn't considered until all else failed. From most of the posts I've read with people with SFN, they all mention severe burning throughout their bodies. I do not have this (yet? maybe never?), though my feet burn at times but not in excess or for days on end. They will hurt, though, and I suspect that my sore feet for years were a precursor to SFN without me knowing it. Ah! Hindsite! I want to begin taking the supplements that have been mentioned in past posts by others. I am starting B-12 (though that reading was ok), Magnesium (though my first dose made me somewhat sick), alpha lopoic acid (gave me a bad case of GERD even though I took it with food) and some of the others that I will research yet again. I believe Mrs. D has a Sticky on that. I am not diabetic, but my reading was 99, just a tad below 'bad'. But when I asked about this, I was told it had to be REALLY high to be considered diabetic or pre-diabetic. Sweets are not my downfall but carbs are. Perhaps, because everyone is different, my 99 is actually too high.

I see my specialist next month. I need to talk to her about what is causing my SFN because I keep reading that once a cause is found, other than idopathic, it can be treated. I hope to get some encouragment from her even though every test was negative. I was also tested for large fiber just to be sure they were ok and they were. Perhaps she will test me again. Ugh! Thanks for your input. I will keep reading.
Mrs.Redman is offline   Reply With QuoteReply With Quote
Old 08-27-2015, 09:44 AM #7
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

If you use the lotion form of magnesium, there won't be side effects on the GI tract.
Magnesium oxide form is a laxative and is not absorbed.
Some people are even sensitive to the chelates.

Morton Epsom Lotion is really nice and effective. You can't really put on your whole body in one day, but you can rotate areas as it seems to last more than one day for me. It is really a small miracle in a bottle for me at least.

A quarter's dollop a day is about the best amount to start with.
It is available at WalMart, some Walgreen's and online at Amazon.

http://www.amazon.com/Morton-Epsom-L...n+epsom+lotion
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
zkrp01 (08-28-2015)
Old 08-27-2015, 10:27 AM #8
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
If you use the lotion form of magnesium, there won't be side effects on the GI tract.
Magnesium oxide form is a laxative and is not absorbed.
Some people are even sensitive to the chelates.

Morton Epsom Lotion is really nice and effective. You can't really put on your whole body in one day, but you can rotate areas as it seems to last more than one day for me. It is really a small miracle in a bottle for me at least.

A quarter's dollop a day is about the best amount to start with.
It is available at WalMart, some Walgreen's and online at Amazon.

http://www.amazon.com/Morton-Epsom-L...n+epsom+lotion
Just wondering... Would this be an alternative way of magnesium delivery into our body that wouldn't interfere with the Gabapentin? I have read that Gaba depletes magnesium; yet taking magnesium interferes with the effectiveness of Gaba and should be taken within a couple hours of each other. Since I take Gaba 3-4 times s day I find it impossible to fit this in. Thx ahead for your reply!
heb1212 is offline   Reply With QuoteReply With Quote
Old 08-27-2015, 10:54 AM #9
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Yes, this topical approach avoids the magnesium warning on gabapentin. Magnesium orally complexes gabapentin in the stomach and prevents its absorption.

I'd space it a bit anyway, because we don't know if magnesium in the blood serum would affect the drug too. There is such a larger volume in the blood than the stomach, so I think both would be diluted out quite a bit. Much of the magnesium in the lotion would stay around the area it was applied to. But I do know it does get into the general circulation, because it lowers my blood pressure quite a bit. (more so when applied to my arms than my legs and feet).
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
heb1212 (08-27-2015)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Newly Diagnosed - Small Fiber/Large Fiber Neuropathy! Please Help! JoshuaY46012 Peripheral Neuropathy 17 11-12-2019 03:55 AM
small fiber neuro eubanksdee New Member Introductions 14 07-16-2013 04:01 PM
exercise and small nerve fiber neuro pinehurstcharlie Peripheral Neuropathy 15 01-22-2012 07:27 PM
large fiber vs. small fiber drwk Peripheral Neuropathy 1 08-15-2011 07:10 AM
Small Fiber, Large Fiber & Autonomic Neuropathy Loves Pappilions Peripheral Neuropathy 9 06-01-2011 09:02 AM


All times are GMT -5. The time now is 09:15 AM.

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.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.