1. < Neuropathy

My experience with Small Fiber Neuropathy

Posted by djroberts @djroberts, Oct 9, 2018

Hi there. Thank you to all the people who support this forum.

I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.

I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.

A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.

I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.

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

Mentor
Jim, Volunteer Mentor | @jimhd | Jan 25, 2021
In reply to @laureen8844 "Jim. Thank you for you response . I am sorry to hear what you are going..." + (show)
@laureen8844

Jim. Thank you for you response . I am sorry to hear what you are going through . Where you tested fir ALS and MS . Stay well

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I was tested for MS because my youngest sister has it. I don't recall any test for ALS, but what I read last night said that involuntary twitching is something that starts after having ALS, not a sign that might be a precursor to having the disease. I also read that it can be caused by pn.

Jim

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1 reply
laureen8844 | @laureen8844 | Jan 26, 2021

Does anybody feel there muscle twitching is worse in the morning .I find in nerve wracking . I am going to see another neurologist this morning . I was curious has anybody ever heard where the first EMG that was clear and no ALS to actually be incorrect. I was going to ask Dr. for another EMG. Thank You

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laureen8844 | @laureen8844 | Jan 26, 2021
In reply to @jimhd "I was tested for MS because my youngest sister has it. I don't recall any test..." + (show)
@jimhd

I was tested for MS because my youngest sister has it. I don't recall any test for ALS, but what I read last night said that involuntary twitching is something that starts after having ALS, not a sign that might be a precursor to having the disease. I also read that it can be caused by pn.

Jim

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Thank God. Would you mind sending me article that you read. Thanks

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 26, 2021
In reply to @laureen8844 "Thank God. Would you mind sending me article that you read. Thanks" + (show)
@laureen8844

Thank God. Would you mind sending me article that you read. Thanks

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@laureen8844 here is one of many references that @jimhd may have seen that refer to muscle twitching symptoms of neuropathy.

"Motor nerve damage is most commonly associated with muscle weakness. Other symptoms include painful cramps, fasciculations (uncontrolled muscle twitching visible under the skin) and muscle shrinking. Sensory nerve damage causes various symptoms because sensory nerves have a broad range of functions." -
Peripheral Neuropathy Fact Sheet | National Institute of Neurological Disorders & Strokes: https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/peripheral-neuropathy-fact-sheet

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1 reply
Nazir Khan | @nukhan | Jan 26, 2021
In reply to @laureen8844 "Thank You Hank very helpful. Great point on Vitamin B. This could be very helpful for..." + (show)
@laureen8844

Thank You Hank very helpful. Great point on Vitamin B. This could be very helpful for others. I wasn't taking Vitamin B supplements at first .My Vitamin B readings however were always normal though . What happens with heavy drinkers is that your liver and kidneys aren't functioning properly and they don't process the vitamin B to the organs that need it. So your blood test will show you as having normal vitamin B levels as it stays in the blood but your are heavily deficient. What actually happened to me when I stopped drinking I went super healthy and was taking a lot of vitamin supplements but it takes a while for you organs to recuperate so my liver/kidneys still weren't processing the vitamins to organs that need them so I ended up with B6 toxicity in my blood which also is quite hard on your nervous system and produces neuropathy type . My B6 reading was three times the normal range I hope that makes sense

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In reply to @laureen8844 thank you for the information on B vitamin. I seem to have vitamin b12 absorption issue as well as a result my blood test always shows my vitamin b12 level to be 4 times higher than the normal range. I have fatty liver although I never touched alcohol in my life. If you don't mind may I know how did you fix the issue. I have been on protocol (now protocol 525) for a year but have realized that I need to fix the vitamin b12 malabsorption issue first. Many thanks
Nazir

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1 reply
laureen8844 | @laureen8844 | Jan 26, 2021

I have completely stopped drinking but it can take up to 6 months for the B6 toxicity symptoms to subside. I eat healthy and exercise regularly. I still have twitching and cramps.

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bogibus | @bogibus | Jan 26, 2021
In reply to @jesfactsmon "@momalin I hope for your sake that Jennifer's suggestion is correct, i.e. pinched nerve. From what..." + (show)
@jesfactsmon

@momalin
I hope for your sake that Jennifer's suggestion is correct, i.e. pinched nerve. From what I have heard, neuropathy does present bilaterally as a rule, so being mostly on one side could be a hopeful sign that it is not sfpn. However, if it is, then sorry to say there is no real cure in most cases. One can hope it will subside on it's own, as it does for a few. But otherwise PN treatment pretty much boils down to pain treatment. Marilyn @steeldove just mentioned the usual course followed by doctors: gabapentin, lyrica and cymbalta (duloxetine). Many here resort to cannabis (marijuana or cannabis oil) which brings relief to quite a few, some try opioids (often with disappointing results). Then there are supplements that are frequently recommended for PN, such as r lipoic acid and benfotiamine. Also curcumin for inflammation. If you have any weak spots healthwise in your lifestyle (diet, exercise, sleep and stress level), work on improving in those area as well. I wish you well and hope that in your case what you have is curable.

By the way, you said you were dx'd with neuropathy. By what method did your doctor make this diagnosis? Just wondering. Best, Hank

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Hank, hi. I have been battling with various issues and wrong diagnoses for years. I was finally diagnosed with small fiber polyneuropathy after labs and punch biopsies. I am already on lyrica, cymbalta and multiple other meds for issues that occur as a result of the effects on various parasympathetic systems. I saw you mentioned cannabis as something you have used for relief. I have pain/freezing, twitching etc especially in my legs but also in my fingers. I live in CO so cannabis is legal and readily available. I also suffer with overwhelming fatigue a lot of the time. I have tried cannabis before have ended up exhausted for 24 hrs after. I tried various strains, many of which were supposed to increase energy but also some for help with sleeping. So far all have left me extremely tired for 24 hrs and I was wondering if you had any suggestions for tyles/strains that you have had some luck with.
On a side note, i tend to have odd reactions to things. I finished a 5 day, 1000mg a day Solu-Medrol infusion treatment 2 weeks ago. Apparently most people end up wired and sleepless as a result of such high doses of steroids. I was barely able to stay awake long enough to start the infusions each day. I am still spending most of my days in bed but it is slowly getting better.
Any help or suggestions you could make would be greatly appreciated!
Thanks
Megan

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