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Old 08-12-2016, 09:14 AM #1
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Default SFN exercise intolerance

Is exercise intolerance, symptom of SFN?
My problem started seven years ago with pain in foot and then calves upon any movement, exertion (standing, walking, Exercise intolerance basically) gotten worse over years and affected back and hand muscle as well and become fatigue because of pain. Two years ago in columbia they did skin biopsy and they said I have SFN. Even though mine is basically caused by exercise which I could not see in SFN documentation a case like this.
IT is idiopathic. I saw an immunologiest that I can try IVIG based on somehow low igg count and see if it helps. My dosage was only 40 gram. I had a bad side effect and I did not notice any improvement yet but maybe still so early. She said I may need to repeat ivig to see if it helps at all.
How long before IVIG helped any one?
Does anyone had similar to my symptoms ? is it SFN?
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Old 08-12-2016, 12:31 PM #2
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i replied to you in the other thread but what i didnt make clear is that i do become very fatigued and my legs become very heavy feeling after a short amount of walking or stair climbing. My arms also become fatigued and heavy feeling if i have to lift them to do something and my hands also become fatigued and heavy feeling if i have to carry or lift something of any weight. I have sesnsory motor large fiber neuropathy.
That is why i was asking you if you were ever tested for large fiber neuropathy because to me it seems as if you have involvement of the motor nerves in your peripheral neuropathy.
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Old 08-12-2016, 04:06 PM #3
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Originally Posted by echoes long ago View Post
i replied to you in the other thread but what i didnt make clear is that i do become very fatigued and my legs become very heavy feeling after a short amount of walking or stair climbing. My arms also become fatigued and heavy feeling if i have to lift them to do something and my hands also become fatigued and heavy feeling if i have to carry or lift something of any weight. I have sesnsory motor large fiber neuropathy.
That is why i was asking you if you were ever tested for large fiber neuropathy because to me it seems as if you have involvement of the motor nerves in your peripheral neuropathy.
Hi Echoes, Thanks for reply. I have done emg, and MRI....genetic testing...
only skin biopsy showed SFN.
Mine is after walking or just standing any exertion on the leg, get a deep, twisting aching pain that could last 2 days or so. It has gotten worse over years. The pain meds bad side effect. But reading the docs is not reflecting if exercise could trigger SFN? and if anything would help?
Thanks
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Old 08-13-2016, 05:58 AM #4
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Default I doubt--

--that exercise can be a CAUSE of small-fiber neuropathy, or indeed any kind of neuropathy, unless that exercise puts one in positions that exacerbate an already existing tendency towards nerve compression. Certainly, pressure on nerves can produce neuropathic symptoms, but this usually happens with weightlifters, or others who to exercises that cause muscle and/or connective tissue to expand and shift (i.e., long distance runners and cyclists, who assume particular positions for long periods of time while doing what they do).

Now, anybody with neuropathy in which the signals get disrupted, or erroneously register sensations, may have increased fatigue. One gets tired much more quickly with pain or numbness just compensating and trying to adjust to those. And, of course, neuropathy can directly affect fibers that go the muscles, causing those signals to be disrupted and resulting in much quicker fatigue. as the muscle fibers are recruited, in a given task, to a lesser degree.

I'm not sure what you mean by neuropathy "caused" as opposed to perhaps symptoms brought on by exercise; can you clarify?
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Old 08-14-2016, 01:50 PM #5
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Originally Posted by glenntaj View Post
--that exercise can be a CAUSE of small-fiber neuropathy, or indeed any kind of neuropathy, unless that exercise puts one in positions that exacerbate an already existing tendency towards nerve compression. Certainly, pressure on nerves can produce neuropathic symptoms, but this usually happens with weightlifters, or others who to exercises that cause muscle and/or connective tissue to expand and shift (i.e., long distance runners and cyclists, who assume particular positions for long periods of time while doing what they do).

Now, anybody with neuropathy in which the signals get disrupted, or erroneously register sensations, may have increased fatigue. One gets tired much more quickly with pain or numbness just compensating and trying to adjust to those. And, of course, neuropathy can directly affect fibers that go the muscles, causing those signals to be disrupted and resulting in much quicker fatigue. as the muscle fibers are recruited, in a given task, to a lesser degree.

I'm not sure what you mean by neuropathy "caused" as opposed to perhaps symptoms brought on by exercise; can you clarify?
Hi Glenn,
Hope all is well by you.
My pain could generate by simply standing or walking. Is this SFN? Thanks
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Old 08-15-2016, 07:20 AM #6
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Default Pain being generated by physical activity--

--is common with neuropathy, although spontaneous pain is as well.

Anything that adds stress or compressive forces to already compromised nerves might make them hurt more, but that doesn't mean the exercise is causing the pain.

What other investigations into cause have you had recently? The skin biopsy can document that there is damage to small fibers, but, as you know, it generally does not reveal an etiology.
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Old 08-15-2016, 09:15 AM #7
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Originally Posted by glenntaj View Post
--is common with neuropathy, although spontaneous pain is as well.

Anything that adds stress or compressive forces to already compromised nerves might make them hurt more, but that doesn't mean the exercise is causing the pain.

What other investigations into cause have you had recently? The skin biopsy can document that there is damage to small fibers, but, as you know, it generally does not reveal an etiology.
Hi Glenn,
Doctor Latov had a standard script that runs to test for a known causes, they came negative and was easily told it is idiopatic.

Done genetic testing as well, negative.
Any other test you can recommend? any meds or vitamin or homeopathy you can recommend ? any good doctor or theriepiest any one can recommend?
Can IVIG help idiopatic SFN?
Thanks
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Old 08-15-2016, 10:39 AM #8
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Default Hi Jake

I'm sitting here getting 30 grams of IVIG as I post...I have idiopathic SFN...I'll keep everyone posted on any positive developments...a nurse just told me she had a patient w SFN that responded well so I was happy to hear that.

I also excercise a lot and I think that it cause my pain to increase...the only excercise that seems to calm my nerves is yoga...)

Anyway keep positive and hope we start finding our way out of this pain.

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Old 08-15-2016, 12:10 PM #9
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Lightbulb

Anyone with weakness or exercise intolerance should try acetyl carnitine. This has proven beneficial effects in the elderly anyway and the HIV community has used it for over a decade now.

Body builders use it in high dose, but people like us may see improvements at just 250mg a day or so. (up to 2 grams if necessary in divided doses). I use Puritan's Pride form, as it it pretty affordable from them.

Carnitine enables mitochondria to use fatty acids when glucose is low. It helps transport the fatty acids across the mitochondria membranes for metabolic energy. I found it very helpful back when I was going to the gym alot, but now I don't use a gym, but still the carnitine helps with stamina and climbing stairs for me now. If I skip a day or two now, I really feel the difference!
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Old 08-15-2016, 01:27 PM #10
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Originally Posted by mrsD View Post
Anyone with weakness or exercise intolerance should try acetyl carnitine. This has proven beneficial effects in the elderly anyway and the HIV community has used it for over a decade now.

Body builders use it in high dose, but people like us may see improvements at just 250mg a day or so. (up to 2 grams if necessary in divided doses). I use Puritan's Pride form, as it it pretty affordable from them.

Carnitine enables mitochondria to use fatty acids when glucose is low. It helps transport the fatty acids across the mitochondria membranes for metabolic energy. I found it very helpful back when I was going to the gym alot, but now I don't use a gym, but still the carnitine helps with stamina and climbing stairs for me now. If I skip a day or two now, I really feel the difference!

Thanks, I took L-carnitine at one point, did not see any effects. How about acetyl carnitine is it much different??
I read that meat contains 80 mg of carnitin. No wonder after eating meat feel stronger.
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