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Old 05-03-2021, 08:07 PM #1
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Default Questions for people with small fiber polyneuropathy

I'm new here (I did post an introduction in the New Members area) and I'm hoping I can get some answers from others with small fiber polyneuropathy.

I haven't been diagnosed with SFN (yet), but from what I've read, it certainly sounds like what might be going on with me.

So...quick rundown of what my experience has been....

- About 8 yrs ago, I had burning pain in my ankle; I thought maybe it was gout but test came back negative. Eventually it subsided on its own.

- About 6-7 years ago, I woke up one night with excruciating burning pain in my thigh (literally, jumped out of bed screaming). Went to the ER, was told it was a pinched nerve; I didn't have health insurance then, so I couldn't get a follow-up.

- About this same time, I also began having issues with fainting if I laugh / cough too much. (I've since had a tilt table test).

- I have since seen 2 neurologists and have had two negative EMGs. I was diagnosed with "maralgia paresthetica" despite the fact that I don't wear tight clothing; the pain is at its worst at night; and physical therapy did not help. I was prescribed Gabapentin but I had a bad reaction.

- Recently, saw a pain management doc; she did an xray but didn't see significant narrowing. She gave me prednisone & flexiril, and referred me for an MRI. I finished the prednisone this past weekend; it didn't help at all with the pain (neither has the flexiril). My MRI is later this month. She did say that, depending on how the meds work, she might refer me to Rheumotology as she thinks it's an autoimmune disorder. My follow-up isn't until 27 May (can't get here quick enough).

Which led me to googling and that such led me here.

So... the questions I have, for those with SFN, are these:

1. If you have the burning pain in one area, can it go away and not reappear there? I'm wondering if the ankle pain I had initially is part of the leg pain I have now? I haven't had the burning in my ankle in years.

2. Does anyone know if chronic migraines are associated with SFN? (Just thought I'd ask).

3. I've read that people with SFN can be really sensitive to hot / cold, but what I've read doesn't go into how that sensitivity manifests, so I'm wondering how does it present itself? Is it that it just makes the pain worse / more frequent?

4. Is frequent tendonitis and / or carpal tunnel syndrome also associated with SFN?

5. Is it possible for someone to be diagnosed with plantar fascitis and it actually be SFN? (I ask because I have been diagnosed with plantar fascitis, but physical therapy has never helped...and now I'm wondering if my foot pain could be tied into this other issue?)


Sorry for the really long post; thank you in advance to anyone that takes the time to read & respond.
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Old 05-03-2021, 09:25 PM #2
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I will relay to you my experience with idiopathic SFN. It began in 2014 with a slight loss of balance and this symptom has progressed at a constant rate although I am still able to walk with a cane. My balance has been my indicator of the progression of my disease. Symptoms started about 1 year later with what felt like a folded sock in my shoes. this symptom comes and goes. Then my arms began to feel sunburned and this symptom comes and goes as well but I think this is alleviated by the Desipramine I am taking which is now at 50 mg/da. I thought that this symptom had gone away but slight symptoms have recurred. I am experiencing slight numbness in my toes. About 3 years ago I began feeling sharp stabbing pains in my feet but my doctor prescribed Gabapentin which has almost totally eliminated the sharp pains. I am now taking 900mg/day and it works for me. One year ago I developed post-herpetic neuralgia which has been far more painful than my SFN. It felt like ice picks sticking me around my left front and backside. The remedy for this was more Gabapentin. At 3600 mg/day I has no nerve pain at all from either of my illnesses. At this dose I had side effects of brain fog sometimes difficulty constructing sentences. My neuralgia has subsided greatly and I have reduced my Gabapentin dose to 900mg/da without any side effects. As for your question 1, I have had sunburning come and go but have associated this with lack of exercise. Alcohol consumption can also cause symptoms to become worse. For question 3, the slight numbing in my legs has caused me not to feel hot and cold, I have no pain with hot or cold, I just cant feel it. For question 4, I have no tendonitis or carpal tunnel. I have no information to share on questions 2 and 5. I do have maralgia paresthetica which pain is eliminated by Gabapentin. My doctor said that this was do to rapid weight gain rather than tight clothing. And for me it made sense. When I learned that I had SFN I was terrified and lossed 30lbs (from 180lb to 150lb) due to stress, but as the stress eased I returned to my normal wight quickly which caused the maralgia paresthetica. For me symptoms have increased slowly over the last 7 years. Hope this helps
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Old 05-03-2021, 09:46 PM #3
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For the foot pain- Maybe consider....
can chiropractic treatment help plantar fasciitis - Google Search


My chiro used adjusting, stretching, low level laser treatments, and also suggested using arch supports.
A few sessions plus the arch supports worked for me.
My foot pain was due to very hot weather & shoes getting tight with swelling feet and it took me awhile to figure out that cause. Then I got rid of those shoes and got a bigger size.
I sometimes get a pressure related sore spot on the top of my foot if my shoe is to snug.

I like to look at alternative care options, MDs tend to RX Meds or suggest generic PT . Chiropractic can be faster and do a few things that PT can't, my chiro used PT modalities as well as adjusting. The Low level laser (also known as cold or soft laser) was great for stopping specific pain spots, I had repetitive work injuries not PN or SFN. But pain is pain.. many of us have some misalignment issues that can be helped..
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Old 05-03-2021, 10:19 PM #4
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Quote:
Originally Posted by Moosepack View Post
As for your question 1, I have had sunburning come and go but have associated this with lack of exercise. Alcohol consumption can also cause symptoms to become worse. For question 3, the slight numbing in my legs has caused me not to feel hot and cold, I have no pain with hot or cold, I just cant feel it. For question 4, I have no tendonitis or carpal tunnel. I have no information to share on questions 2 and 5. I do have maralgia paresthetica which pain is eliminated by Gabapentin. My doctor said that this was do to rapid weight gain rather than tight clothing. And for me it made sense. When I learned that I had SFN I was terrified and lossed 30lbs (from 180lb to 150lb) due to stress, but as the stress eased I returned to my normal wight quickly which caused the maralgia paresthetica. For me symptoms have increased slowly over the last 7 years. Hope this helps
It's interesting that you mentioned the lack of exercise affecting the burning pain. Initially, when I first started getting the burning pain in my legs, I was actively going to the gym 3 times a week and had lost about 30 lbs. I eventually stopped because of my plantar fascitis was too painful for me to continue (I have regained all that weight and then some). Wrt alcohol usage...that doesn't apply to me (haven't had a drink in almost 20 years; but good to know anyhow).

As for the hot / cold, thank you for answering that. This past year has been odd for me, in terms of temperature. Normally, I am colder than everyone else around me, which is why I hate winter so much because I really don't tolerate it well. But this year, during the winter, the cold didn't have near as much of an affect on me as it normally does. But it's definitely not that I don't feel it at all, as in your situation.

Wrt the maralgia parasthetica... from what was explained to me is that it is typically seen in people who wear really tight utility-type belts (i.e. military personnel; police; etc) and that usually it resolves after a few months with PT and sometimes with meds. For me, this has been going on for years and PT hasn't helped. I also find it odd that, while I am overweight, it began initially after losing weight and it really only affects me at nighttime. And the xray I had done, the doctor said it didn't really show significant narrowing (but I do have an MRI scheduled for later this month, just in case). So we'll see, I guess.

I know I read somewhere that, since your nerves are in every part of your body, people with SFN can experience a variety of symptoms. That's why I was asking about the migraines, tendonitis, and plantar fascitis.... was just curious if any of those things might tie into this. (I do have chronic migraines...approximately 2 a week; and I get frequent tendonitis in my wrists and lately I've been getting numbness in my left hand).

I'm glad you have found some pain relief. I hope eventually, I can say the same for myself. Thank you so much for replying (and again, sorry for the long post, lol).
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Old 05-04-2021, 12:58 AM #5
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Hey Dannibal,

Welcome to the forum, you post some great questions, and I have some thoughts on some of them. When I have time I will reply.

Best wishes,
Atty
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Old 05-04-2021, 07:59 AM #6
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--see my post to your thread in the New Member Introductions area:

Hoping for a proper dx in the future.
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Old 05-11-2021, 02:01 PM #7
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Hi! I too am new to the site. I have been treated for Diabetic PN for the past three years with Gabapentin and Cymbalta. Sometimes it worked, sometimes not. When the Gabby wasn't working the dose was increased. I had nerve conduction and emg done in December 2019 -results were normal. Dr. performing procedures asked if neurologist had mentioned small fiber neuropathy. No... never heard of it. We'll, by time my Neuro appt would have been Covid stopped the world. Finally gotten back to Neuro and finally correctly diagnosed with small fiber neuropathy AND fibromyalgia. For time being we decided to add an additional 20 mgs to my Cymbalta as most of the time the Gabby is sufficient. I'm usually in pain but I can control it most times. I do have bad balance issues and use forearm crutches, rollater and canes to move around. The meds, plus others I take, make me flaky but I'm alive.
Sorry for the length.
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Old 05-11-2021, 04:10 PM #8
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Old Today, 01:54 AM #9
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Quote:
Originally Posted by Dannibal View Post
I'm new here (I did post an introduction in the New Members area) and I'm hoping I can get some answers from others with small fiber polyneuropathy.

I haven't been diagnosed with SFN (yet), but from what I've read, it certainly sounds like what might be going on with me.

So...quick rundown of what my experience has been....

- About 8 yrs ago, I had burning pain in my ankle; I thought maybe it was gout but test came back negative. Eventually it subsided on its own.

- About 6-7 years ago, I woke up one night with excruciating burning pain in my thigh (literally, jumped out of bed screaming). Went to the ER, was told it was a pinched nerve; I didn't have health insurance then, so I couldn't get a follow-up.

- About this same time, I also began having issues with fainting if I laugh / cough too much. (I've since had a tilt table test).

- I have since seen 2 neurologists and have had two negative EMGs. I was diagnosed with "maralgia paresthetica" despite the fact that I don't wear tight clothing; the pain is at its worst at night; and physical therapy did not help. I was prescribed Gabapentin but I had a bad reaction.

- Recently, saw a pain management doc; she did an xray but didn't see significant narrowing. She gave me prednisone & flexiril, and referred me for an MRI. I finished the prednisone this past weekend; it didn't help at all with the pain (neither has the flexiril). My MRI is later this month. She did say that, depending on how the meds work, she might refer me to Rheumotology as she thinks it's an autoimmune disorder. My follow-up isn't until 27 May (can't get here quick enough).

Which led me to googling and that such led me here.

So... the questions I have, for those with SFN, are these:

1. If you have the burning pain in one area, can it go away and not reappear there? I'm wondering if the ankle pain I had initially is part of the leg pain I have now? I haven't had the burning in my ankle in years.

2. Does anyone know if chronic migraines are associated with SFN? (Just thought I'd ask).

3. I've read that people with SFN can be really sensitive to hot / cold, but what I've read doesn't go into how that sensitivity manifests, so I'm wondering how does it present itself? Is it that it just makes the pain worse / more frequent?

4. Is frequent tendonitis and / or carpal tunnel syndrome also associated with SFN?

5. Is it possible for someone to be diagnosed with plantar fascitis and it actually be SFN? (I ask because I have been diagnosed with plantar fascitis, but physical therapy has never helped...and now I'm wondering if my foot pain could be tied into this other issue?)


Sorry for the really long post; thank you in advance to anyone that takes the time to read & respond.
Hey Dannibal,

My reply to question 5.

I have a history of Plantar Fasciitis (PF)and it predates my Peripheral Neuropathy. (PN) I think they are separate entities, however PN makes one more sensitive to things like PF My understanding of my own PF is that it is due to an unstable foot caused by tightness elsewhere in the body notably tight calves and Achilles tendon but tightness throughout the body including hips and back.
I was a "county standard" runner ( a vainglorious term meaning not very good) and the way I stabilized my foot was with an arch support. I have a collapsed high arch and am an over pronator ( foot rotates out to in) I have worn arch supports in all my shoes for thirty years with minimal PF symptoms.

When I developed PN my first symptoms were tingling/numbness in my toes. Suddenly one day in January 2020 my right ankle pretty much collapsed after an unexpected long walk with inappropriate shoes and my gait changed dramatically. I bought an ankle brace and had to wear it for several weeks just to walk. This is how I discovered I had PN. Ankles are vulnerable for those with PN. I would say to anyone with PN, look after your feet. Keep them warm. Wear good shoes. I never used to wear slippers but I managed to find a fur lined sole insert with an arch support from Amazon. Heaven.

I will write further on your other questions when I have time but an swamped at work currently.

Best wishes,

Atty
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