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-   -   Small Fiber Neuro PLUS Fibromyalgia (https://www.neurotalk.org/peripheral-neuropathy/225133-fiber-neuro-plus-fibromyalgia.html)

Mrs.Redman 08-26-2015 01:41 PM

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.

glenntaj 08-27-2015 06:10 AM

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

Healthgirl 08-27-2015 07:25 AM

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.

Patrick Winter 08-27-2015 08:16 AM

Quote:

Originally Posted by Healthgirl (Post 1166195)
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.

heb1212 08-27-2015 08:49 AM

Quote:

Originally Posted by Patrick Winter (Post 1166205)
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.

Mrs.Redman 08-27-2015 09:26 AM

SFN PLUS fibromyalgia
 
Quote:

Originally Posted by heb1212 (Post 1166210)
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.

mrsD 08-27-2015 09:44 AM

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

heb1212 08-27-2015 10:27 AM

Quote:

Originally Posted by mrsD (Post 1166225)
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!

mrsD 08-27-2015 10:54 AM

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).


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