1. < Neuropathy

Treatment options that have worked for Small Fiber Neuropathy

Posted by moakes @moakes, Feb 27 9:32pm

I am a new member to the Neuropathy group and looking to find information about what has worked for others to reduce their neuropathy pain and improve their condition. My pain started a few years ago in my forearms and spread to the rest of my body in September of '23. I was diagnosed with SFN in October. I've had some pain relief from Lyrica + Cymbalta, but pain in my feet is getting worse making it painful to walk. Been trying acupuncture, dry needling, and PEMF as alternative treatment but no noticeable improvements to date.

Interested in more discussions like this? Go to the Neuropathy Support Group.

adejuliannie | @adejuliannie | Apr 10 7:52pm

I use Red Light Therapy by Novaalab from There Web sight
Cost me $224 FDA APPROVED! Help me Tremendously with an legs
Haven't had pain or Swelling for 2 months about Neuropathy was absolutely horrible.

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adejuliannie | @adejuliannie | Apr 10 7:58pm

I gave used the new Red Light Therapy by Novaalab FDA App ordered from there Web site cost me $224. Took exteme pai away from legs an Feet been good for 2 months now.

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Mafalda | @mafalda | Apr 11 5:22am
In reply to @twinkie23 "I was diagnosed with sfn and sensory polyneuropathy in February of this year by an emg..." + (show)
@twinkie23

I was diagnosed with sfn and sensory polyneuropathy in February of this year by an emg and nerve conduction test, although the neuropathy in my legs has been present for years. I’m now experiencing numbness and tingling in both feet and sometimes in my hands. I’m also having trouble walking straight. I must look like I’m drunk. Is this consistent with sfn? I don’t see the neurologist until May and I’m very concerned that I may get worse by then.

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Same symptoms, the only thing that has helped me is exercising. With some massage that will warm up my legs muscles and
Prednisone of 60 mgs that was prescribed at my crisis. Now I'm at 10 mgs. Look for a neuromuscular specialist, and take exercising very seriously. I do it every day and it has taken me out of the disease.

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1 reply
larry68 | @larry68 | Apr 11 8:36am
In reply to @julbpat "I take Baclofen for a muscle relaxant. It doesn’t make me groggy. I usually can’t tell..." + (show)
@julbpat

I take Baclofen for a muscle relaxant. It doesn’t make me groggy. I usually can’t tell I’ve taken it. Most days I don’t. I do a lot of leg-shaking, hand rubbing and other twitchy movements unconsciously, probably as a distraction from pain. My muscles stay tight. So when I become aware of this - usually when I sit down in the evenings - I take Baclofen. I try not to take it before driving, because I also have Percocet in my system. I also rely on CPAP to keep me breathing through the night. I take Ambien at night, because when the long day is done, I WILL NOT lie awake at night.
Lots of medications to keep life manageable.

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I was having the same problems and had to walk with roller.I started checking all my scripts for side effects etc.. and quit 2 +quit drinking.3 days later i was walking like a champ and 2 months later still going strong.I had been to every Dr. you can think of + emergency room and noone had a clue how to fix it and just told me it would never get better.HaHa,here i am walking.Check your drugs yourself folks!!! Oh and i was diagnosed with Neuropathy 8 years ago.Probably still have it but I got it under control.

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rebsue | @rebsue | Apr 11 8:38am
In reply to @mafalda "Same symptoms, the only thing that has helped me is exercising. With some massage that will..." + (show)
@mafalda

Same symptoms, the only thing that has helped me is exercising. With some massage that will warm up my legs muscles and
Prednisone of 60 mgs that was prescribed at my crisis. Now I'm at 10 mgs. Look for a neuromuscular specialist, and take exercising very seriously. I do it every day and it has taken me out of the disease.

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Mafalda--I wonder if you would share what exercises you do which help with small fiber neuropathy? Thanks.

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suetex | @suetex | Apr 12 10:27am

Rituximab treatment: 3rd day after my first treatment and I woke up feeling more energetic and less sleepy than I have been. Still have symptoms (loss of balance, legs slightly less stiff, musle wasting and lack of strength in legs). Dare I hope?

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memyselfi | @memyselfi | Apr 12 1:40pm

For me, exercise is not at all a cure for this disease. I exercise a lot. Go to the health club, exercise bike (it's the most benign for my condition), do all sorts of weight lifts for my legs (even at the cost of some real pain), do yoga/physical therapy/stretching exercises most every morning, things targeted for me by professionals. Oh and I'm a PE/Health/English teacher who is always getting exercise just doing.

Bottom line, though, exercise has not stemmed the tide of this disease for me, rolled it back, or even turned back the pain as much as I can discern. I'm glad if it does for anyone else, but there's nothing sure fire about it. I can attest to that.

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prudencemorton | @prudencemorton | Apr 12 8:00pm
In reply to @artemis1886 "Tricyclics - aka Amitriptyline they make you gain weight. The neurologist was going to prescribe it..." + (show)
@artemis1886

Tricyclics - aka Amitriptyline they make you gain weight.
The neurologist was going to prescribe it to me. My cardiologist said and electrophsiologist said no. The problem with small fiber neuropathy is it affects your organs including your heart. My heart rate jumps all over the place. It will be high goes low 90/60 and then normal 120/70. They were worried my blood pressure would drop in my sleep and I would stand up and fall or have seizures. You can have seizures when your blood pressure is too low or to high. The is what I use at night along with some very loose socks.
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm

There is no name for it my neurologist says each one individually. It has a long acting lidocaine. I am allergic to neurotin and lyrica by mouth my face swells and I turn red.
Bacoflen makes me feel like I have the flu orally. The only time I get to use it is when I am in Germany with my husband. I can’t bed over due to a hip fracture and replacement way too much metal.

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Thanks artemis1886. I too have small fiber neuropathy, so thanks for the information as per the pain cream. Where can I access the pain cream? I am really suffering.

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2 replies
bettyg81pain | @bettyg81pain | Apr 15 9:36am

For the person who was saying he had tried a "leg sweezer" Got a laugh; but, I have an Air Compression Leg Massager by Umarmung and it really does help alot if you have swelling in your feet and legs.

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julbpat | @julbpat | Apr 16 7:57am
In reply to @prudencemorton "Thanks artemis1886. I too have small fiber neuropathy, so thanks for the information as per the..." + (show)
@prudencemorton

Thanks artemis1886. I too have small fiber neuropathy, so thanks for the information as per the pain cream. Where can I access the pain cream? I am really suffering.

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A neurologist can prescribe the pain cream. I can’t remember if you have a neurologist, but if you do, you should be able to call and ask for it. Be aware it is a compounded cream, from a compounding pharmacy, and usually isn’t covered by insurance. I pay $118 for two 8 oz pump bottles. Right now using it on my lower back/hip area allows me to do some yard work without stabbing muscular pain. There are many different “recipes”, but they are all similar.

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