New Diagnosed SFN with Full Body Allodynia Help!!!!
 

I have been struggling with neuropathy since March due to nerve impingement in my ankle. In late July out of no where 20 minutes after taking a shower was in so much pain like I had been pelted with rocks. I was in so much pain and anything that touched my body caused more pain. Finally talked to the DR. via phone mid Aug. He said I have SFN with Allodynia and prescribed gabapentin until I was It has helped some but if I take a shower or bath I'm still in pain. If certain clothes and the bed sheets still hurt. Takes a week or more to calm down

What have worked for you for pain, clothes, bathing, etc.? Any advise welcomed.

From what you wrote, you might want to explore our RSD/CRPS forum also, just to compare. To be sure you have the correct diagnosis and best care..
https://www.neurotalk.org/reflex-sym...rsd-and-crps-/

many years ago there was a lady that had RSD/nerve (mis)diagnosis for her ankle and it was eventually fixed by a chiropractor, an impinged nerve...

Thanks for the information. I will definitely look into it

Do you have any suggestions for me as to what to do till I'm able to see a chiropractor

Hi, I have this on and on too. I have not found a lot that helps 100% but I do use aspercream [roll on] with lidocaine and this helps me somewhat.

Thanks
 

I purchased some a few days ago it helped. Do you use it daily?

I use it when ever i get a flare, mine usually comes and goes especially if i get stressed for some reason it will bring it on. At first when it started i was using it daily but it has calmed down a bit so i don't have to do a dailly application. They also have some that comes in a little bottle that comes out in a lotion type of application [also aspercream/lidocain] i use it that way too if i have an area on my skin i want to cover a little bit heavier. I am glad it helps you a little. Also after using it a few times on the same part of the body i have also found that making sure you clean the older stuff off before you put the new stuff on helps penetrate the skin better.

FWIW. My doctor say to be careful with using too much Lidocaine as it can adversely effect the heart rhythms.

JKPHOTO

Try low dose naltrexone.

Recently I developed similar symptoms and was going crazy. A naturopath gave me a shot with B vitamins and within a day the allodynia had gone away. I already knew I have autoimmune pernicious anemia and get a shot of B12 once a month, but the combination of B vitamins may have been the ticket. He assured me I would feel better but I did not believe him. Worth a shot. It was a naturopath who discovered the pernicious anemia after I'd been to many other doctors. Best of luck as it is miserable.

Thanks for the info that's what I was thinking could using to much cause harm. I only use it sparingly.

Thanks I'll look into it.

Thanks will definitely ask the doctor about it.

I've used lidocaine creams too with some positive effect. I also use IcyHot ointment which is essentially menthol and methyl salicylate. Some might say it stings. For me I get a tingling icy effect, burning if on sensitive skin. It seems to overwhelm with neuropathy sensations, creating a numbing effect that for me tends to last for a while sometimes even canceling out the bothersome sensations.

Allodynia
 

I have the same exact problem especially with clothes and sheets. Sadly it's usually 4 to 6 times a day I have to change clothes to feel some relieft and on top of it all I can see the white flakes coming off of my skin and staying on the inside of my clothes. Have you found anything else that works yet? I've been given the gabapentin by my dermatologist and told to use prescribed lidocaine patches and I've done the gabapentin but haven't done the lidocaine patches consistently. I never thought I would find someone else who's going through the exact same thing I am.

Have you been examined--
 

--for full body small-fiber neuropathy possibilities?

I was given a referral to a rheumatologist in the capital of our state since it's only 45 min away from where I live. And the rheumatologist examined me for fibromyalgia or any other rheumatology reason and determined that I didn't have it. And I was also sent to the neurologist and gave me a nerve conduction test which came out normal and showed no findings of peripheral neuropathy or any other emg findings on the test and suggested I begin taking a multivtamin, which I haven't done. But I was sent to a dermatologist about 8 months ago and 6 months ago determined that I had extremely dry skin as well dermatitis. And the next appointment the dryness was getting a little better but I was still having horrible pain. So, the pain she believed was coming from the allodynia and gave me a prescription of gabapentin for 300 mg tablets to take 1 to 3 times a day. as well as giving me lidocaine patches and I've consistently done the gabapentin but not consistently the lidocaine patches as well as keeping up with moisturizing my skin.

What is small fibers neuropathy?

Does the icy hot really help?

Really I didn't know too much lidocaine could effect the heart. Is it bad if i use the aspercream lidocaine roll on thats infused with essential oils and use it all over my stomach, sides, and thighs and legs since my pain is all over my body? Especially since it's not just all lidocaine it also has the essential oils

I'll have to try the icy hot balm. Does it come in a roll on or is it just a cream/lotion? Would the icy hot no mess pain relief be just as good or is the hot balm better?

small fiber peripheral neuropathy involves the small nerve fibers that usually do not have a myelin sheath. Small nerve fibers in the skin subsume the sensations of touch and temperature. Damage to the small nerve fibers will not show up on an EMG/NCS Electromyography/ Nerve conduction study.


Your symptoms sound like small fiber peripheral neuropathy. A skin punch biopsy will show the amount of small fiber nerve damage you have and is used for a diagnosis. I have had it done. it was not painful and no complications afterwards at all.

You really think my symptoms sound like this condition I totally thought it was allodynia because of my clothing issue with the fabrics. Who could I ask to do a small skin biopsy? Could I ask my dermatologist to do it?

So, my skin sensitvity to the textures of clothes as well as the fittedness of clothes and my legs going numb and having a tingling feeling after sitting for a while. All of this could be small fiber neuropathy? Can I ask what you're symptoms were and did you end up getting diagnosed with it? Also, who did your skin biopsy, was it a dermatologist?

yes tingling and numbnees and your sensitivity to textures and clothes are common symptoms of those with small fiber neuropathy.

My skin punch biopsy was ordered by and done in a neurologists office.


I was initially diagnosed in the fall of 2003 with large fiber peripheral neuropathy via an EMG/NCS due to toxic exposures . My symptoms, which had started in late September 2001, were numbness in my feet and pain. The EMG/NCS showed that I had mild/moderate large fiber PN in my feet and mild PN in my hands. Over the years the areas of numbness moved up my legs to my knees and my lower arms. I now have severe large fiber damage in my hands, lower arms, feet and legs from knees down.

It is fairly common to have small fiber nerve damage also if you have severe large fiber nerve damage, but i did not do a skin punch biopsy when they first became avilable or for many years after because i didnt seethe point to it, since it wouldnt change treatment.

That changed for me in 2022 , when some health benefits I needed required that a diagnosis of small fiber PN be made. So I had a skin punch biopsy done in the neurologists office. I had no trouble getting approval and the procedure itself is simple, not painful and i had no side effects or complications.

Your situation is different in that your EMG/NCS showed no large nerve fiber involvement, so the next logical step, with your symptoms, is too test for small nerve fiber peripheral neuropathy. skin punch biopsy is a definitive test for small fiber pn.

Thank you so much for your advice. Maybe in July when I see my dermatologist I'll tell her about even with the medication, the pain doesn't stop unless I use the lidocaine on my body. Because she said last time if the medication didn't work I might have to go see a neurologist.

How long does it take of consistently using the icy hot to make the pain go away without having to use the icy hot anymore?