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Small Fiber Neuropathy

Posted by kfrenc04 @kfrenc04, Feb 10, 2022

Are there any treatments available or trials for Small Fiber Neuropathy? My symptoms get worse every day. Thank you

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

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joannemm34293 | @joannemm30809 | May 16, 2022

I have had many of these neuropathy symptoms for 2.5 years. I finally go Wednesday at Tampa FL USF campus for a Snf Skin biopsy. All other tests I have had have not yeilded any diagnosis.

I started medical marijuana about eight months ago and it does relieve a lot of the symptoms but does not relieve them completely. These over the counter cbd stores and their products did NOT work for me at all and that's why I took the next step and went to a state licensed medical marijuana doctor for my medical marijuana card.

I can not understand why so many doctors have no idea what so ever on why these neurological symptoms started etc. All these doctors do is blame anxiety and want to quickly send you out the door with a Rx for anti depressant medication. I'm fed up.

AND All of my doctors that I have seen from neurologist to endocrinologist to cardiologist to primary care doctors to emergency room doctors etc all of them will refuse to even think about the covid virus or other types of viruses starting this avalanche of neurological problems that affect me at least from head to toe. My symptoms affect my extremities my muscles my blood pressure my poles my vision my heart rate my bowels and also my sensory perception with what I can explain as sensory overload where I feel like I have adrenaline rushes through my body like a tidal wave yet all the blood work up for my adrenal glands or my thyroid or my metanephrines or metanephrine free blood tests all come back normal YET I feel awful.
I have been continually sending my neurologist and my cardiologist and my primary care doctor studies done over the last year that directly link long haulers and the covid virus to many of these autonomic nervous system problems under the dysautonomia umbrella. More doctors need to start focusing at least in some part that some of their patients have developed these debilitating neurological symptoms from the covid virus. I just cannot understand why so many specialist in America, and we are supposed to be the most medically advanced country, that they are so far behind on these neurological symptoms and have really no clue at all what to do or how to treat you except for to give you a prescription for antidepressants and blame everything on anxiety and stress. I'm so sick of it

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John, Volunteer Mentor | @johnbishop | May 16, 2022
In reply to @steveny9 "I don't have pain either. It started 16 years ago and only recently has it moved..." + (show)
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I don't have pain either. It started 16 years ago and only recently has it moved up the leg. I also tried acupuncture but it did not work. My father had it too so I also think it was genetic.

I have it in my feet, below the knees and the tips of 3 fingers on my right hand.

I wonder how far it will progress now.

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Welcome @steveny9, I think you have asked the question that so many of us have asked. I'm not sure there is an answer. Mine started in my late 40's and I only have the numbness with a little tingling but no pain. There is another discussion on the topic you might want to read through --- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

I didn't bother with a diagnosis for well over 20 years after my primary care doctor told me there was no fix for the problem. Have you been diagnosed with neuropathy or do you just have the symptoms?

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jart | @jart | May 16, 2022
In reply to @artscaping "Hi there Joy (if I can call you by your name?), I understand. It is frustrating...." + (show)
Profile picture for Chris, Alumni Mentor @artscaping

Hi there Joy (if I can call you by your name?), I understand. It is frustrating. I guess you can wait on the skin biopsy........it is just that a confirmed diagnosis tells other medical entities and professional clinicians what they are dealing with in order to help you. You can have multiple punches, e.g. ankle, leg, etc. They are hardly invasive. It takes about 3 seconds and a small bandaid. As long as your neurologist is the only clinician you have and he treats you for SFN, you should be fine. However, if you want to seek help at another facility like Mayo Clinic, you will need the skin biopsy results. And if you want to take advantage of MFR or other therapies, your insurance may require confirmation of the diagnosis.

Now....let's focus on something else.......medical cannabis. Do you live in a state in which medical marijuana is legal? Have you had any experience with medical cannabis? I have managed to control my SFN pain and discomfort without any other pain medicine. I happen to be highly sensitive to medications so this is perfect for me.

I do have GAD.....general anxiety disorder as a result of my SFN and so I use Duloxetine (Cymbalta). Since anxiety creates pain and pain creates anxiety, this helps me avoid that whole merry-go-round.

I see that you are learning a lot from John Bishop about the supplements which help him tremendously.

We are here for you..........no questions or thoughts are ever unwelcome.

Chris

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What a kind and sensitive reply. Thank you. He now has so many maladies, it’s just so hard to watch a once vibrant and strong man become so weakened. SFN is “just” one of the many things he’s facing. Feel helpless but am trying to give as much support and encouragement as I can. Meantime, I try to learn as much as I can.

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lecowing | @lecowing | May 16, 2022
In reply to @steveny9 "I don't have pain either. It started 16 years ago and only recently has it moved..." + (show)
Profile picture for SteveSH @steveny9

I don't have pain either. It started 16 years ago and only recently has it moved up the leg. I also tried acupuncture but it did not work. My father had it too so I also think it was genetic.

I have it in my feet, below the knees and the tips of 3 fingers on my right hand.

I wonder how far it will progress now.

Jump to this post

It sounds like we have VERY similar problems except mine affects both hands, I can no longer touch type, button my shirts (use button hook) and have difficulty turning pages of a newspaper or magazine. I can shuffle around the house with no cane but I can not stand still without touching something (wall or furniture), outside the house I use either a cane or walking stick. I am 85 now so just waiting to see what happens next.

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retired123 | @retired123 | May 16, 2022
In reply to @joypalmer1 "Has anybody tried a grounding mat for their SFN? I know someone who sleeps on a..." + (show)
Profile picture for joypalmer1 @joypalmer1

Has anybody tried a grounding mat for their SFN? I know someone who sleeps on a grounding mat and it as significantly helped her neuropathy in her feet.

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Has anyone in the group used a grounding mat or wrist band? Please share your experience.

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islandfrog | @islandfrog | May 16, 2022
In reply to @joypalmer1 "I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I..." + (show)
Profile picture for joypalmer1 @joypalmer1

I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy

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I have been diagnosed with "poly neuropathy" No mention of small fiber. I am not in the U.S, so it may not exactly translate. My doctors are not from the U,S but are quite capable. All tests have been "normal" so the cause is just a guess. I have had the numbness in hands and (mostly) feet for more than 3 years. If I am wearing shoes, it feels like I have small marbles in them. It does not feel like that when barefoot. I also had Lhermitte's sign (an odd symptom), but it seems to have mostly dissipated with pharma. I have not experienced any severe pain, or burning thank goodness. Everything started pre COVID.

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Chris, Alumni Mentor | @artscaping | May 17, 2022
In reply to @artv "How did I find those meds ? I am a veteran and receive my care from..." + (show)
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How did I find those meds ? I am a veteran and receive my care from the VA. I suffered some discomfort from my neuropathy for many years thinking it was the varicose veins that I had. After I got accepted for VA care, the discomfort got so that I couldn't take it any longer. That's when neurology started trying to help me. My condition was not the usual presentation of neuropathy, After many appts and tests, finally, they diagnosed it as small fiber peripheral neuopathy. I started with Gabapentin which did nothing (it does for some people). Under a new doctor in the pain clinic, he started me on Amitriptyline - which helped - and increased the dose until I got substantial relief. It had be a long drawn out process through several medications including narcotics that did me the worst - not a good one for neuropathy. I do suffer with it now, but Amitriptyline can be adjusted to compensate for the severity of it. It is definitely a formidable issue to deal with. The key for me was a good neurologist and pain clinic doctor.

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Thank you for this story of discovery. I also receive help now from Duloxetine. When I was first diagnosed, I was given Nortriptyline. These medications including your Amitriptyline have proven to be helpful to many.
Chris

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jeanallen | @jeanallen | May 17, 2022
In reply to @artscaping "Thank you for this story of discovery. I also receive help now from Duloxetine. When I..." + (show)
Profile picture for Chris, Alumni Mentor @artscaping

Thank you for this story of discovery. I also receive help now from Duloxetine. When I was first diagnosed, I was given Nortriptyline. These medications including your Amitriptyline have proven to be helpful to many.
Chris

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Has anyone tried Nervive?

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jeanallen | @jeanallen | May 17, 2022
In reply to @artscaping "Thank you for this story of discovery. I also receive help now from Duloxetine. When I..." + (show)
Profile picture for Chris, Alumni Mentor @artscaping

Thank you for this story of discovery. I also receive help now from Duloxetine. When I was first diagnosed, I was given Nortriptyline. These medications including your Amitriptyline have proven to be helpful to many.
Chris

Jump to this post

Where can you get Duloxetine?

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