1. < Neuropathy

Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

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lcassotta | @lcassotta | Jul 19, 2021
In reply to @artscaping "Good evening @icassotta, May I also welcome you to Connect. You are only 57 and have..." + (show)
@artscaping

Good evening @icassotta, May I also welcome you to Connect. You are only 57 and have had idiopathic SFN for 3 years. What is your pain level compared to the worst pain you have ever experienced? What else have you been using?

I have been using medical cannabis for at least 5 years. I began with the strains and then moved to made-up dosages of CBD and THC. I have never micro-dosed THC. For one thing, there are no placebo groups or double-blind research efforts. I am satisfied with the options available for different times of day and levels of pain. I use everything from a 2:1 CBD/THC to a 1:3 CBD/THC. I also use both topical balms and tinctures.

My experience has taught me that just like other medications, our bodies become less than content with the initial dose and we have to increase the quantity of one or both of the ingredients. That is challenging enough for me to get it right. I rely on two companies that I have trusted since my introduction to medical cannabis.

I am here for you if you have additional questions or just want to run something by me. Where on your body is your pain the heaviest? Do you also have numbness and tingling?

May you be physically healthy.
May you be mentally healthy.

Chris

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Hi Chris! Thank you for your response. To answer your question, I have numbness, tingling, random nerve pain, and lately, weakness and achiness in my limbs (esp. my legs!). I also have numbness, tingling, and sensitivity in palms and soles. Other symptoms also, but that is the jist. All this makes sleep very difficult. I am on some caridiac meds, but otherwise managing symptoms (unsuccessfully!) w lifestyle. I first started using CBD to help me sleep, and as you noted, seemed to build up a tolerance. Then, I changed to a 1:1 CBD/THC (up to 5 mg tincture) at night to help sleep. It helps, and I have heard from podcasts and such that is can help with neuropathy. I figure taking CBD/THC could be more effective than those other drugs! So, curious to learn more about efficacy of using it during the day (without feeling stoned!). Any thoughts, experience welcome!

REPLY
1 reply
trishh | @trishh | Jul 20, 2021
In reply to @rgolia13 "Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines..." + (show)
@rgolia13

Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines lyrica cymbalta gabetin amptrypilline nothing has calmed the burning pain. I have burning pain on my triceps and entire back into my buttocks area and a band of numbness below my chest Around the upper area of my stomach which makes it difficult to breathe and eat. I was vitamin b deficient even though my numbers read high and my blood sugars where out of control. I have lowered my ac1 to 7.5 and have been receiving vitamin b-12 methlycoloban shots. Has anyone ever experienced the burning sensations on there backs and the band of numbness. I only read about hands and feet and nothing else.

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I have a question. I have Small Fiber Neuropathy in my left foot spreading up left leg. The burning pain is horrible but i recently started physical therapy for kneecap slipping and spur. My pain has increased severly! I cant sleep. Does PT make SNF worse? My friend is a PT Professor and helped me with nerves flossing. Will I improve with time?

Trish

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2021
In reply to @trishh "I have a question. I have Small Fiber Neuropathy in my left foot spreading up left..." + (show)
@trishh

I have a question. I have Small Fiber Neuropathy in my left foot spreading up left leg. The burning pain is horrible but i recently started physical therapy for kneecap slipping and spur. My pain has increased severly! I cant sleep. Does PT make SNF worse? My friend is a PT Professor and helped me with nerves flossing. Will I improve with time?

Trish

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Hello @trishh, Welcome to Connect. If the kneecap slipping is causing a pinched nerve it can make the pain worse. Here's some information on pinched nerve in the knee - https://www.healthline.com/health/what-causes-a-pinched-nerve-in-the-knee-and-how-to-treat-it. Is your small fiber neuropathy only in you left foot and leg? Do you mind sharing what tests were done to diagnose you with small fiber neuropathy?

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1 reply
trishh | @trishh | Jul 20, 2021
In reply to @johnbishop "Hello @trishh, Welcome to Connect. If the kneecap slipping is causing a pinched nerve it can..." + (show)
@johnbishop

Hello @trishh, Welcome to Connect. If the kneecap slipping is causing a pinched nerve it can make the pain worse. Here's some information on pinched nerve in the knee - https://www.healthline.com/health/what-causes-a-pinched-nerve-in-the-knee-and-how-to-treat-it. Is your small fiber neuropathy only in you left foot and leg? Do you mind sharing what tests were done to diagnose you with small fiber neuropathy?

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Thanks for response and info on pinched nerve.
I have had biopsies in both feet and shins which showed SFN in left foot and peroneal nerve.
Last EMG and NCT was 3 years ago and polyneuropathy before then showed no motor response in feet, wasting, left leg weaker, foot drop.
I cant have MRI due to metal left from prior GI surgery.
I don't know if I call ....i have a sleeve/brace on knee to stabilize but may need to remove to see if help pain. I have been so nauious with pain today. Have ice and elevate now.

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1 reply
trishh | @trishh | Jul 20, 2021
In reply to @trishh "Thanks for response and info on pinched nerve. I have had biopsies in both feet and..." + (show)
@trishh

Thanks for response and info on pinched nerve.
I have had biopsies in both feet and shins which showed SFN in left foot and peroneal nerve.
Last EMG and NCT was 3 years ago and polyneuropathy before then showed no motor response in feet, wasting, left leg weaker, foot drop.
I cant have MRI due to metal left from prior GI surgery.
I don't know if I call ....i have a sleeve/brace on knee to stabilize but may need to remove to see if help pain. I have been so nauious with pain today. Have ice and elevate now.

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I have bone spur also.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 27, 2021
In reply to @lcassotta "Hi Chris! Thank you for your response. To answer your question, I have numbness, tingling, random..." + (show)
@lcassotta

Hi Chris! Thank you for your response. To answer your question, I have numbness, tingling, random nerve pain, and lately, weakness and achiness in my limbs (esp. my legs!). I also have numbness, tingling, and sensitivity in palms and soles. Other symptoms also, but that is the jist. All this makes sleep very difficult. I am on some caridiac meds, but otherwise managing symptoms (unsuccessfully!) w lifestyle. I first started using CBD to help me sleep, and as you noted, seemed to build up a tolerance. Then, I changed to a 1:1 CBD/THC (up to 5 mg tincture) at night to help sleep. It helps, and I have heard from podcasts and such that is can help with neuropathy. I figure taking CBD/THC could be more effective than those other drugs! So, curious to learn more about efficacy of using it during the day (without feeling stoned!). Any thoughts, experience welcome!

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So sorry for my tardiness. I am getting ready for a TKR and have been playing catch up. I am glad you are helped with a 1:1 for sleep. I use a double dose 2:1 CBD/THC at bedtime. I save my 1:3 CBD/THC for my toughest pain and symptom days. Why you might ask.......because it really knocks me out and I sleep the day away. That's good for my pain tolerance level because my body plays catch up. It's not good because I get nothing done including responding to folks on Connect.

The numbness and tingling is helped by using the topical. You can test which one works best. The 1:3 CBD/THC or the 3:1 CBD/THC. According to the company P & B (Papa and Barkley), the Rich CBD version is great for chronic pain and the Rich THC version for acute pain. My experience verifies that recommendation.

I do not like to waste the whole day and I don't like the feeling of zoning out. At'lthough there have been changes in my methods and my results over the years, I also know that the consistency of the products has greatly improved. That's what happens with legalization......the companies have to crank up their production methods for development and testing.

Please check in.......what are you planning for your lifestyle changes? How does that work for you. Right now I am off on the sleep schedule, If I sleep or nap in the afternoon, then I stay up too late at night.

Do you have wake-up pain during the night?

May you be free of suffering and the causes of suffering.
Chris

REPLY
lcassotta | @lcassotta | Jul 27, 2021
In reply to @rgolia13 "Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines..." + (show)
@rgolia13

Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines lyrica cymbalta gabetin amptrypilline nothing has calmed the burning pain. I have burning pain on my triceps and entire back into my buttocks area and a band of numbness below my chest Around the upper area of my stomach which makes it difficult to breathe and eat. I was vitamin b deficient even though my numbers read high and my blood sugars where out of control. I have lowered my ac1 to 7.5 and have been receiving vitamin b-12 methlycoloban shots. Has anyone ever experienced the burning sensations on there backs and the band of numbness. I only read about hands and feet and nothing else.

Jump to this post

Thank you for your response Chris! Like you, I do not like the idea of wasting the day zoning out! So I save my THC:CBD for night, but have heard small dosing during the day can help without the grogginess. I will try the topical from P & B for sure. Thank you for the suggestion. Yes, I often wake up during the night with achiness in my legs mainly. Life style wise, I used to exercise a lot. Now mainly walks, and I find yoga stretching really helps temporarily. Thank you for your tips!

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janstar61 | @janstar61 | Sep 4, 2021
In reply to @brie87144 "Sorry my life had been up in shambles lately. I haven’t really found any options for..." + (show)
@brie87144

Sorry my life had been up in shambles lately. I haven’t really found any options for my neuropathy. The neurologist at mayo in Az told me it’s not a condition he will treat until they know the cause. Which knowing the cause is kinda impossible since I have so much else going on. I need to go back to the neurologist but won’t be doing that till I recover from my recent surgery.

Have you found anything useful or come across any ways to deal better?

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ok, find another doctor. There is such a thing as idiopathic neuropathy and my neurologist says that is what I have and he treats it.

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retired123 | @retired123 | Sep 12, 2021

I have SFN with all of the usual symptoms but at some point during the day I get a "surge" of something going into my lower legs, ankles and feet. It is intense, makes walking extremely difficult. It can last a couple of hours or so and then goes away, back to "normal". Does this happen to anyone else and what/why is it? Thanks.

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lisa965 | @lisa965 | Sep 12, 2021

I have axonal sensory ..small fiber and autonomic neuropathies .all tested and confirmed ..thats where everything goes off key .its not in my feet ankle up .severe pain deep tearing pain .then all the sensory issues going on full body .no burning no numbness..itching crawling zapping vibrating ..with the 24/7 pain.and autonomic..unable to sweat so heat intolerance .always have to be cool no sun heat or hot water ever .high heart rate .gi issues bladder issues dizzy headaches insomnia..no mobility ..no dr does anything but shrug n stare like a fool .34 drs ..im just left an invalid for yrs ..crazy

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