Treatment options that have worked for Small Fiber Neuropathy

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.

You are absolutely CORRECT. Every patient’s results from every possible
‘cure” will be different. We are each on our own quest although reports of other’s
journey is helpful.

My feet started hurting in early 2018, around 6 months after my second organ transplant. I was told by one Neurologist it is from my taking Prograf/Tacrolimus since 2000. I heard from my previous transplant coordinator that other of her patients have had similar issues. Stated Lyrica 50mg 3x daily then switched to 75mg 2x daily. Now I take 100mg 2x daily. Seems to help some. But I also have a medical marjiuana card in state for the past 3 years and get both CDB and THC products. I take/use these products at night for sleep and it has helped with dealing with the pain at night.

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.

Yes it is consistent…exercise,walking, self massages of legs and feet help.I am going to try the Accelera device. Balance is a issue..balance exercises help and getting more blood to the brain. This does not go away but you can slow it down.

I was just reading through another older thread that there well might be a connection between statin use and neuropathy. JFC...just when I think I'm getting a bit more of a handle on this "disease" (is that what you call it?), I read this and think to myself "I've been taking a statin (Rosuvastatin) for some time now. Should I rethink this?"

This cholesterol med was about the only med I regularly took besides Flomax (for urine flow) and Fluticasone Propionate (for allergy) before this PN set in. If there is a correlation between statin use and nerve damage, should I quite my statin use now? Hmm....

I also have read about statins and neuropathy. My cardiologist switched me to Zetia. This may not cure neuropathy but possibly stop progression. Another med is Repatha.
It's something to talk to your cardiologist about.

When I was on gabapentin prior to lyrica, Neurontin was rxd to potentiate it when the max dose wasn’t effective. unfortunately, the practitioner at the time wouldn’t increase the Neurontin when after a month it wasn’t as effective working synergistically.
I switched over to Lyrica and I’m on 75 mg every eight hours. I tried the Neurontin again to no aval. they refused to Increase the lyrica. I know sometimes some other tricyclics will potentiate it. Have they considered that for you.
I’m going to look into increasing my vagal tone.

Good evening, @twinkie23; in your first sentence, you say you were diagnosed with SFN (small fiber neuropathy) just a month or so recently. Just to get a headstart, may I ask if your diagnosis was based on the results of a skin biopsy that may have been done on your ankle tissue? This test determines what percentage of your nerve cells are working as they are supposed to. For example, my score was .09. That kind of tells me that not much is going on down there.

At the time of the test, I was beginning to notice some tingling in my toes and heels. It wasn't too long before the pain began. At this point, I have very little feeling in my feet. In addition, I have sharp pain in my right heel that is out-shouting the everyday tingle tangles.

About two years ago, I began to worry about driving with these recurrent symptoms. At the time, I had an MFR (myofascial release therapy) session once a week to make sure my nerves were awakened and ready to do their job.

Now......I have two sessions of MFR a week with two MFR therapists attending. Both of them work hard to relieve the SFN issues on my feet. Then one therapist moves to my hands which have been introduced to the numbness of SFN as well as freezing cold.

One of the therapists uses her fingers as if she had a reflexology instrument or Zone therapy issue to resolve. Although the twice-a-week sessions help considerably, I realize now that there is no current medication or assistant therapy that can bring my hands and feet back to normal.

I would like to introduce you to @jenniferhunter. She has created an entire Connect discussion for MFR and can be very helpful. While you are waiting for her to read this post, you may benefit from reading the MFR discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be safe, protected and free from inner and outer harm.
Chris

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.