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.

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

Mentor
John, Volunteer Mentor | @johnbishop | Apr 15 2:46pm
In reply to @daj3333 "Can someone tell me the best place to order R ALA and what brand is a..." + (show)
@daj3333

Can someone tell me the best place to order R ALA and what brand is a good deal. I’m looking for 300 mg and there seem to be a ton of them with a wide range in prices.

Jump to this post

I'm not sure about the best place to order but before I was ordering the protocol (https://theprotocolworks.com/) I have used these two from Amazon.

Premium Supplements - https://www.amazon.com/R-Alpha-Lipoic-R-LIPOIC-count-STRENGTH/dp/B01M0QS5C7
Gerenova Research - https://www.amazon.com/dp/B003JOBJ5O/ref=sspa_dk_detail_3

REPLY
2 replies
daj3333 | @daj3333 | Apr 15 4:05pm
In reply to @johnbishop "I'm not sure about the best place to order but before I was ordering the protocol..." + (show)
@johnbishop

I'm not sure about the best place to order but before I was ordering the protocol (https://theprotocolworks.com/) I have used these two from Amazon.

Premium Supplements - https://www.amazon.com/R-Alpha-Lipoic-R-LIPOIC-count-STRENGTH/dp/B01M0QS5C7
Gerenova Research - https://www.amazon.com/dp/B003JOBJ5O/ref=sspa_dk_detail_3

Jump to this post

Thank you for the reply John. Of the two links you sent one is for 60 pills and the other 90 for roughly the same price. That’s the confusion I’m having. Is there a reason to pay more for a particular brand of R ALA? Do terms like stabilized matter? I’m thinking made in the USA is probably a good thing. Any help anyone can provide would be appreciated.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 15 4:26pm
In reply to @daj3333 "Thank you for the reply John. Of the two links you sent one is for 60..." + (show)
@daj3333

Thank you for the reply John. Of the two links you sent one is for 60 pills and the other 90 for roughly the same price. That’s the confusion I’m having. Is there a reason to pay more for a particular brand of R ALA? Do terms like stabilized matter? I’m thinking made in the USA is probably a good thing. Any help anyone can provide would be appreciated.

Jump to this post

Quality wise I think they are both comparable but the 90 count is .37/capsule vs .57/capsule for the 60 count so a little cheaper. The stabilized just means it is more bioavailable and easier for your body to absorb.

REPLY
dlydailyhope | @dlydailyhope | Apr 16 9:40am
In reply to @daj3333 "Can someone tell me the best place to order R ALA and what brand is a..." + (show)
@daj3333

Can someone tell me the best place to order R ALA and what brand is a good deal. I’m looking for 300 mg and there seem to be a ton of them with a wide range in prices.

Jump to this post

@daj3333
I take the following brand of ALA (600 mg). It helps me quite a bit manage small fiber neuropathy pain. I have also taken Acetyl L Carnitine. Good luck getting a good brand that works for you!
https://a.co/d/j98M431

REPLY
veronica2000 | @veronica2000 | May 17 12:53am

Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are starting to get involved. Have an appointment with neuromuscular specialist June 5 and want to ask about IVIG infusions.
I have Hashimoto's and ITP but still am told that my SFN is idiopathic. I have ulnar nerve damage and carpal tunnel, have revision surgery next month to repair.
My SFN symptoms are worsening and now are above knee and elbows. GI has been involved since the beginning, very low blood pressure, and now migraines. I have tried all sorts of medicines and nothing has worked. I give up on doctors and tell myself I have to accept and live with this horrible pain but I end up going back with hopes to get help. If something has worked for any of you, please share, at this point I'm willing to try anything. 😔

REPLY
3 replies
harley22 | @harley22 | May 17 2:03am
In reply to @veronica2000 "Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are..." + (show)
@veronica2000

Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are starting to get involved. Have an appointment with neuromuscular specialist June 5 and want to ask about IVIG infusions.
I have Hashimoto's and ITP but still am told that my SFN is idiopathic. I have ulnar nerve damage and carpal tunnel, have revision surgery next month to repair.
My SFN symptoms are worsening and now are above knee and elbows. GI has been involved since the beginning, very low blood pressure, and now migraines. I have tried all sorts of medicines and nothing has worked. I give up on doctors and tell myself I have to accept and live with this horrible pain but I end up going back with hopes to get help. If something has worked for any of you, please share, at this point I'm willing to try anything. 😔

Jump to this post

I’m living with this monster for 12 years, and honestly there’s nothing so far that I can say helped me.
Been on all the meds like Gabapentin, etc, with no relief.
Now only ed that takes the edge off my terrible pain in my feet is Tramadol.
Had IVIG infusions for 8 months with no relief from them either.
Just had an appt with a new neurologist in another state,probably my 7 th one.
I’m hoping maybe he will be able to help me.
Sorry I can’t help you.

REPLY
lovelandmimi | @lovelandmimi | May 17 8:17am
In reply to @veronica2000 "Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are..." + (show)
@veronica2000

Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are starting to get involved. Have an appointment with neuromuscular specialist June 5 and want to ask about IVIG infusions.
I have Hashimoto's and ITP but still am told that my SFN is idiopathic. I have ulnar nerve damage and carpal tunnel, have revision surgery next month to repair.
My SFN symptoms are worsening and now are above knee and elbows. GI has been involved since the beginning, very low blood pressure, and now migraines. I have tried all sorts of medicines and nothing has worked. I give up on doctors and tell myself I have to accept and live with this horrible pain but I end up going back with hopes to get help. If something has worked for any of you, please share, at this point I'm willing to try anything. 😔

Jump to this post

I have neuropathy which affects my legs and feet. Dr. Hasn’t been able to identify the cause yet. It was so unbearable especially at night. My Pain Dr. suggested a spinal cord stimulator. At first I was skeptical and kept putting it off until I felt like I had no choice but to at least try it. I went through the trial period and it did seem to help so I decided to have the permanent one implanted 3 weeks ago today. I can honestly tell you that it was the best decision that I have ever made! The neuropathy is at least 95% improved. I have the Boston Scientific stimulator. It is worth trying the trial to see if it gives you ralief. I hope you find something that helps you.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 17 8:28am
In reply to @lovelandmimi "I have neuropathy which affects my legs and feet. Dr. Hasn’t been able to identify the..." + (show)
@lovelandmimi

I have neuropathy which affects my legs and feet. Dr. Hasn’t been able to identify the cause yet. It was so unbearable especially at night. My Pain Dr. suggested a spinal cord stimulator. At first I was skeptical and kept putting it off until I felt like I had no choice but to at least try it. I went through the trial period and it did seem to help so I decided to have the permanent one implanted 3 weeks ago today. I can honestly tell you that it was the best decision that I have ever made! The neuropathy is at least 95% improved. I have the Boston Scientific stimulator. It is worth trying the trial to see if it gives you ralief. I hope you find something that helps you.

Jump to this post

Welcome @lovelandmimi, It's great to hear that you have found a treatment that provides relief for your neuropathy. Since you mentioned Boston Scientific stimulator I thought you might like to scan through other discussions that are related. Here is a link to the discussions and comments you might find helpful - https://connect.mayoclinic.org/search/?search=boston+scientific.

How long have you had the neuropathy symptoms?

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | May 17 8:44am
In reply to @veronica2000 "Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are..." + (show)
@veronica2000

Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are starting to get involved. Have an appointment with neuromuscular specialist June 5 and want to ask about IVIG infusions.
I have Hashimoto's and ITP but still am told that my SFN is idiopathic. I have ulnar nerve damage and carpal tunnel, have revision surgery next month to repair.
My SFN symptoms are worsening and now are above knee and elbows. GI has been involved since the beginning, very low blood pressure, and now migraines. I have tried all sorts of medicines and nothing has worked. I give up on doctors and tell myself I have to accept and live with this horrible pain but I end up going back with hopes to get help. If something has worked for any of you, please share, at this point I'm willing to try anything. 😔

Jump to this post

Hello @veronica2000, I moved your discussion and merged it into an existing discussion titled, "Small Fiber Neuropathy: What helps?" - https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.

It is a bit of lengthy discussion, but has many great posts about how other members are living with and managing their small fiber neuropathy.

REPLY
veronica2000 | @veronica2000 | May 17 10:11am
In reply to @johnbishop "I'm not sure about the best place to order but before I was ordering the protocol..." + (show)
@johnbishop

I'm not sure about the best place to order but before I was ordering the protocol (https://theprotocolworks.com/) I have used these two from Amazon.

Premium Supplements - https://www.amazon.com/R-Alpha-Lipoic-R-LIPOIC-count-STRENGTH/dp/B01M0QS5C7
Gerenova Research - https://www.amazon.com/dp/B003JOBJ5O/ref=sspa_dk_detail_3

Jump to this post

Thank you John, I'm going to check the links. What do you feel they helped the most with?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.