burning pain esp when in PEM

SnappingTurtle

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Nearly a year after I first fot sick with EBV, I started to notice the tingling and burning sensations on my soles and palms were spreading to my entire body: most noticeable on my back, shoulders, neck and tops of my thighs. My pcp called it neuropathy. It gets worse when I am in PEM and 1100mg gabapentin seems to be lessening the degree of burning sensation.

I requested a local referral to a neurologist but she only ordered an emg/ncv which showed normal. I suspect I have SFN but am wondering how one can be definitively diagnosed for this?

I was also wondering if there is an ME/CFS experienced doctor in GA or AL, who can order SFN diagnostic tests?

I read a bit that there are no sure treatments for it but just like most everyone here, I just want confirmation so folks will know it is not in my head.

Thank you in advance for advice.
 
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I read a bit that there are no sure treatments for it but just like most everyone here, I just want confirmation so folks will know it is not in my head.
I think there are some possible tests for confirming it, mentioned here in a Healthline article:

https://www.healthline.com/health/small-fiber-neuropathy#diagnosis

They can do skin biopsies that aren't terribly invasive.

I think the following may also be indicators, but that requires looking around old threads here.

Fingerprints missing
Biopsy of fingernails
numbness: half my hand and foot are numb: isn't that a sign of something neurological? and peripheral?
finger wrinkle test

the tingling and burning sensations on my soles
I have lots of issues with the soles of my feet and elbows (in my case). Palms OK. Developed a weird bursitis in my elbows, Doctors can't explain it.

Doctors can't explain most of this crap.
 

Starsister

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I’m on SFN FB group because I’m sure it’s part of my issue.. burning skin all over body but especially the areas that get the most pressure or irritation.. for me my torso hips etc so hurts like heck to sit or lay down. Can’t stand thought of painful EMG or the skin punch test and no treatment other than what I’m doing already. Combo of hydrocodone and Valium when it gets unbearable. Worse thing ever. Mine is getting progressively worse. Good luck with yours💕
 

Learner1

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Nearly a year after I first fot sick with EBV, I started to notice the tingling and burning sensations on my soles and palms were spreading to my entire body: most noticeable on my back, shoulders, neck and tops of my thighs. My pcp called it neuropathy. It gets worse when I am in PEM and 1100mg gabapentin seems to be lessening the degree of burning sensation.

I requested a local referral to a neurologist but she only ordered an emg/ncv which showed normal. I suspect I have SFN but am wondering how one can be definitively diagnosed for this?

I was also wondering if there is an ME/CFS experienced doctor in GA or AL, who can order SFN diagnostic tests?

I read a bit that there are no sure treatments for it but just like most everyone here, I just want confirmation so folks will know it is not in my head.

Thank you in advance for advice.
Have you looked into deficiency or overdose of B1 or B6, both of which can cause neuropathy? Or severe oxidative stress, or which NAC or Setra glutathione might help?

Or autoimmune antibodies?
 
Messages
227
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696
Location
GA, USA
I’m on SFN FB group because I’m sure it’s part of my issue.. burning skin all over body but especially the areas that get the most pressure or irritation.. for me my torso hips etc so hurts like heck to sit or lay down. Can’t stand thought of painful EMG or the skin punch test and no treatment other than what I’m doing already. Combo of hydrocodone and Valium when it gets unbearable. Worse thing ever. Mine is getting progressively worse. Good luck with yours💕
Would you please share the link to the FB group? Thaank you for kind sentiment.
 
Messages
227
Likes
696
Location
GA, USA
Have you looked into deficiency or overdose of B1 or B6, both of which can cause neuropathy? Or severe oxidative stress, or which NAC or Setra glutathione might help?

Or autoimmune antibodies?
I hadn't looked at those. Docs might hsve run autoimmune tests. I will have to look again. Thank you for giving me items to look into.
 
Messages
227
Likes
696
Location
GA, USA
I think there are some possible tests for confirming it, mentioned here in a Healthline article:

https://www.healthline.com/health/small-fiber-neuropathy#diagnosis

They can do skin biopsies that aren't terribly invasive.

I think the following may also be indicators, but that requires looking around old threads here.

Fingerprints missing
Biopsy of fingernails
numbness: half my hand and foot are numb: isn't that a sign of something neurological? and peripheral?
finger wrinkle test



I have lots of issues with the soles of my feet and elbows (in my case). Palms OK. Developed a weird bursitis in my elbows, Doctors can't explain it.

Doctors can't explain most of this crap.
Thank you for the details! I hope I csn find a nee neurologist in my area.
 

lenora

Senior Member
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Hello @SnappingTurtle.....I'm sorry to hear about your problems. It sounds like you may have SFN b/c your body is certainly indicative of nerve damage. I also suffer from it, was on fentanyl patches for years (did/didn't help), was able to easily get off (thankfully) and find that Lyrica (cousin of gaba) has helped a lot.

Also, I've used Ace ice packs...blue fabric covered packs that can be bought in drugstores & Walmart. There are now different sized ones, a special one covers a very large area on the back. Just put a tea towel over it, and place it in the spinal cord area for about 15-20 min. I've found that to be the best way to get rid of nerve pain. It's 15-20 min. on and 15-20 min. off. Smaller ones can be used in the chest area, if necessary. I have all different sizes and there was a time when they were in daily use. Not as much now that it's under better control. They don't freeze in a solid mass, so are soft when you lay on them.

I used to be like Pavlov's Dog when ice was mentioned. Obviously everyone wants a heating pad instead, but ice is what did it for me. Too long with a heating pad or even ice results in even tighter muscles and increased nerve pain. As you know...watch that hydrocodone and valium. Some muscle relaxants can help, but I find they lead to even more pain and stiffness when I stop using them. Ice will numb that pain & you may even get some rest. I put in on from the back of the neck all the way down. FYI, in case it will help.

There is also a compound cream (mixed by a compound pharmacy) and your doctor should have the name of one and can prescribe exactly what you need. Some can be very expensive, so be careful and ask him/her for the cheapest one that will work. Also ask that it be packed in ice if delivered. Heat hurts it. These ointments can work very well, and don't affect the organs like meds can do.

No, most doctors don't have the answers b/c the problems are so incredibly diverse. I'm surprised that your rheumatologist didn't have more information for you, but he started you on gaba (from the sound of it) so should know about myofascial therapy or massage...look under "fascia" to get an understanding of the part it plays in the body. Inflammation is a problem, ask what you can take to get it under control. Actually, your pcp seems to have been of help.

You didn't put your age, but do you have diabetes, do you drink alcohol more than once/wk. (even then keep the amount small), is your nutrition adequate...I mean really good, balanced nutrition? And yes, you may have some problems with the B vitamins. I can assure you that at age 74 it has taken a lot of time and effort on my part, with good doctors, before any change occurs. Stress makes everything worse. I don't mean to overwhelm you, but these are serious considerations. Also, what is your cholesterol level and do you have any other blood tests that may have been out of range. Younger doctors tend to know the latest techniques and have access to the latest equipment. Have any tests read by as many doctors as possible...especially ones like MRI's. Not just reports, but request that they be actually read by them. A good neurologist will do that as a matter of course. Often it takes 2-3 doctors to find out the entire story, plus the radiologist. You can pick up a copy of your report and a CD to have in your personal file and show it to the doctor and ask for a reading. Call the hospital and they'll put you through to proper dept.

Yours, Lenora.
 
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