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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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bmelvin | @bmelvin | Mar 12, 2023
In reply to @johnbishop "Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that..." + (show)
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Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that helped you. Can you share a little more about your treatments and what has helped?

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I have freezing feet from SFN too. Buy UGGS from the online UGG outlet. They are much less expensive and the same thing.

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larry4343 | @larry4343 | Mar 13, 2023
In reply to @bmelvin "Hello, I am a 48 year old female who lost the ability to sit up, stand..." + (show)
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Hello,

I am a 48 year old female who lost the ability to sit up, stand and walk shortly after having the Moderna vaccine in May of 2021. At the same time, I also developed severe pelvic floor dysfunction, a rectocele and Dyssynergia. Initially, over the course of about 6 months, I retaught myself to walk and only the pelvic floor dysfunction, Dyssynergia and complete numbness in my feet was left. In November of 2021 my legs began stiffening and now I am almost completely stiff and numb to my knees, I have developed joint pain in my hips and knees and have been diagnosed with SFN. I also do not have normal indications when I have to urinate. I have been to the Mayo Clinic twice (this is where I was diagnosed originally peripheral nerve damage as a side effect of the Moderna COVID vaccine) are currently working with doctors at Duke and have been in pelvic floor PT with limited success. Can anyone provide any information regarding similar issues, helpful intervention, specific specialist that might be able to help me? Any information would be incredibly helpful!

Thank you!

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Hi @bmelvin,
Very sorry to hear about your condition. your doctors are probably already aware, but I saw a paper by researchers at Mass General. They found that in some cases, post-Covid vaccine neuropathy was due to an autoimmune response. They were able to successfully treat most of the patients in their cohort with steroids, and/or IVIg. I’ve posted a link here in the past but you can probably find it faster by google, or by going to the publication section at the neuropathology Commons site. Best of luck.

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bmelvin | @bmelvin | Mar 13, 2023
In reply to @larry4343 "Hi @bmelvin, Very sorry to hear about your condition. your doctors are probably already aware, but..." + (show)
Profile picture for larry4343 @larry4343

Hi @bmelvin,
Very sorry to hear about your condition. your doctors are probably already aware, but I saw a paper by researchers at Mass General. They found that in some cases, post-Covid vaccine neuropathy was due to an autoimmune response. They were able to successfully treat most of the patients in their cohort with steroids, and/or IVIg. I’ve posted a link here in the past but you can probably find it faster by google, or by going to the publication section at the neuropathology Commons site. Best of luck.

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Thank you so much,

When this initially happened I was treated with 5 days of steroids and 5 days of IVIG. I am going to read what you sent me to see if the people in cohort received more treatments. Thank you again for the information!

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bmelvin | @bmelvin | Mar 13, 2023
In reply to @bmelvin "Thank you so much, When this initially happened I was treated with 5 days of steroids..." + (show)
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Thank you so much,

When this initially happened I was treated with 5 days of steroids and 5 days of IVIG. I am going to read what you sent me to see if the people in cohort received more treatments. Thank you again for the information!

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Hello,

I am sorry to bother you again. I just called the head of Neurology at Mass General who specializes in small fiber Neuropathy. Of course, I was was met by being asked to leave a message. I am having a hard time finding the study you referred to online. If it is possible to send me the link, I would appreciate your help tremendously. Thank you!!!!

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julbpat | @julbpat | Mar 14, 2023

When I have an appointment, I usually call once a week to see if they have any cancellations sooner. Sounds like a neurologist will be able to help, especially since you have a history of PN. Read all you can find and see if there are other clues in the past seven years that might be linked!

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katee | @katee | Mar 25, 2023

Something that has helped me with peripheral neuropathy.
My foot neuropathy was the result of chemotherapy. I was experiencing severe cramps in my toes at night, I have been taking magnesium and this has stopped them. Another thing I have discovered Is “Epsom salts”. I soak my feet in water the the added epsom salts and have got some feeling back. I have only been doing this a short time, so don’t know where it is going yet.

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Illa C. Chambers | @illac | Mar 25, 2023
In reply to @katee "Something that has helped me with peripheral neuropathy. My foot neuropathy was the result of chemotherapy...." + (show)
Profile picture for katee @katee

Something that has helped me with peripheral neuropathy.
My foot neuropathy was the result of chemotherapy. I was experiencing severe cramps in my toes at night, I have been taking magnesium and this has stopped them. Another thing I have discovered Is “Epsom salts”. I soak my feet in water the the added epsom salts and have got some feeling back. I have only been doing this a short time, so don’t know where it is going yet.

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Thank you so much for sharing that is totally awesome anything solution that works is definitely better than nothing. Have an amazing rest of your week.

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madison2023 | @madison2023 | Mar 26, 2023
In reply to @katee "Something that has helped me with peripheral neuropathy. My foot neuropathy was the result of chemotherapy...." + (show)
Profile picture for katee @katee

Something that has helped me with peripheral neuropathy.
My foot neuropathy was the result of chemotherapy. I was experiencing severe cramps in my toes at night, I have been taking magnesium and this has stopped them. Another thing I have discovered Is “Epsom salts”. I soak my feet in water the the added epsom salts and have got some feeling back. I have only been doing this a short time, so don’t know where it is going yet.

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Magnesium before bed has really helped me to sleep. I do not have symptoms overnight. My doctor suggested magnesium. I bought magnesium citrate since it came in gummies (and it has worked). However I was recently told by a nurse friend that magnesium glycinate would be even more beneficial for nerve health. There is a difference in how the body absorbs it.

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jonelson4 | @jonelson4 | Mar 26, 2023
In reply to @katee "Something that has helped me with peripheral neuropathy. My foot neuropathy was the result of chemotherapy...." + (show)
Profile picture for katee @katee

Something that has helped me with peripheral neuropathy.
My foot neuropathy was the result of chemotherapy. I was experiencing severe cramps in my toes at night, I have been taking magnesium and this has stopped them. Another thing I have discovered Is “Epsom salts”. I soak my feet in water the the added epsom salts and have got some feeling back. I have only been doing this a short time, so don’t know where it is going yet.

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I have been taking magnesium glycinate at night, too, and it is helping. I also take B12.

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michael149 | @michael149 | Mar 26, 2023
In reply to @katee "Something that has helped me with peripheral neuropathy. My foot neuropathy was the result of chemotherapy...." + (show)
Profile picture for katee @katee

Something that has helped me with peripheral neuropathy.
My foot neuropathy was the result of chemotherapy. I was experiencing severe cramps in my toes at night, I have been taking magnesium and this has stopped them. Another thing I have discovered Is “Epsom salts”. I soak my feet in water the the added epsom salts and have got some feeling back. I have only been doing this a short time, so don’t know where it is going yet.

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was it hot or cold water

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