Small fiber neuropathy

Posted by rgolia13 @rgolia13, Jan 22, 2019

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.

@lcassotta

thank you for reaching out! suffering with SFN can be such a lonely journey. my husband found it, and suggested i join. i am not sure what he was searching for – likely he just googled Small Fiber Neuropathy.

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You are not alone! The one suggestion I would have is to read, search and learn as much as you can about your condition and possible treatments. The more you know, the better questions you can ask your doctor or neurologist and hopefully find something that helps you. Here are my two go to websites for information on neuropathy.

Neuropathy Commons: https://neuropathycommons.org/
Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Good luck on your journey and feel free to jump into any discussion and ask questions of members. If you see a post by a member and you want to ask a question about it, just click the REPLY button directly under the post. If you have a question not to any specific member but just something you want to ask members following the discussion, scroll to the bottom of the page and type your question in the Comment box and click the POST COMMENT button.

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@johnbishop

You are not alone! The one suggestion I would have is to read, search and learn as much as you can about your condition and possible treatments. The more you know, the better questions you can ask your doctor or neurologist and hopefully find something that helps you. Here are my two go to websites for information on neuropathy.

Neuropathy Commons: https://neuropathycommons.org/
Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Good luck on your journey and feel free to jump into any discussion and ask questions of members. If you see a post by a member and you want to ask a question about it, just click the REPLY button directly under the post. If you have a question not to any specific member but just something you want to ask members following the discussion, scroll to the bottom of the page and type your question in the Comment box and click the POST COMMENT button.

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Perfect! Thank you for tips and resources!

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@johnbishop

Hello @lcassotta, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. A healthy lifestyle can certainly slow down and help some of the symptoms of neuropathy or at least not make it worse which not so healthy lifestyle can make it worse. There is another discussion where members have shared their neuropathy journey which I think you may find helpful.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

@artscaping has some experience with using THC but I'm not sure about micro-dosing. Here's a link to her story in the discussion above – https://connect.mayoclinic.org/comment/310344/

The Foundation for Peripheral Neuropathy has some information on Complementary + Integrative Therapies on their site: https://www.foundationforpn.org/living-well/integrative-therapies/

Do you mind sharing what you were searching for when you found Connect?

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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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@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!

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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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@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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@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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@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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@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

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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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