1. < Neuropathy

Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Sep 6, 2019

I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.

I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves...worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)

I don't know if any of this could be helpful for you or not, But I seem greatly improved recently......I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.

Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!

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

Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @burningfeetinphoenix "Thanks. I will post my results...So far I have had no bad side effects. I have..." + (show)
@burningfeetinphoenix

Thanks. I will post my results...So far I have had no bad side effects. I have SFPN and so far it appears to be idiopathic. Basically I am self-diagnosed. Came on all of a sudden in April 2019. It is spreading from my feet to my legs and hands. Although I take no oral pain medication, I do take Lamictal for Complex Partial Seizure Disorder. Lamictal is used for lots of things although it was, I believe, developed as an anti-epileptic drug many years ago. I had tried all the anti-seizure meds 25 years ago when I was diagnosed with CPSD and I had adverse reactions to these meds - all of them. I see a neurologist in October and hopefully I'll get some advice and confirmation of my self-diagnosed SFPN and possibly find the cause if there is one. I did get the biopsy and I think that proved my theory. I am also trying to get an appointment at the Mayo in Jacksonville. Although I live in Phoenix, Mayo here will not take me as a patient...Pam

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I also was denied (by Mayo in MN). My belief is that I had already been diagnosed with SFPN, chronic migraine and corneal disease and they can't give me any more than my current Drs are able to give.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @burningfeetinphoenix "The cost from Vitalitus of the PEA 2% topical cream called Soothamide was $35.99. Includes free..." + (show)
@burningfeetinphoenix

The cost from Vitalitus of the PEA 2% topical cream called Soothamide was $35.99. Includes free shipping. Quantity is 100 ml. I ordered the Vitalize pure PEA (no fillers) in capsules quantity 100 capsules for $37.75 from Amazon for $37.75. Free shipping on Prime but taxed. It is made in the Netherlands and now I am not sure how to get it although there are other products claiming 100% pure PEA. PeaCure also has this pure PEA product but it is a little more expensive. I have been using the cream for 3 days. Another forum member says it takes 3-4 weeks for the capsules to take effect. Pam

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Thanks for the information Pam!

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burningfeetinphoenix | @burningfeetinphoenix | Sep 14, 2019

Thanks @rwinney...is your SFPN idiopathic? All I have is a biopsy report. I have not seen a real Dr yet (podiatrist only who I still believe are not real Drs and he is basically doing nothing than trying to give me $2,500.00/treatment Exosome injections. I declined as he claims this will regenerate the nerves but if I have SFPN the nerves will only be destroyed again if, for example, I have an autoimmune or genetic cause of the condition... SFPN is not a foot problem, it is a neurological problem that affects other parts of the body. So basically I have not seen a real Dr yet...my experience with Drs is limited so I figure go for the best if possible, Pam

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1 reply
burningfeetinphoenix | @burningfeetinphoenix | Sep 14, 2019

Mayo Phoenix said they are much smaller than Jacksonville and Minnesota and that there is a waiting list but I cannot get on it because I am on Medicare and they are not taking Medicare although it says they do. The lady I spoke with told me to try Jacksonville. I wanted to "self pay" but she said they will not take my $$$ because I have a Medicare number. Go figure! Pam

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3 replies
cwm1 | @cwm1 | Sep 14, 2019

Well, I can tell you that Mayo Jax is no better as far as denying patients. Neurology wouldn’t see my husband because it had been over 3 years since he had seen a neurologist there. Just this last week, he was actually given an appt with a gastro dr and they called back and cancelled it. He had an endoscopy and colonoscopy by a dr in that Dept. just in May. But he is having issues with his hemoglobin count and his local hematologist referred him back to that gastro. He was told that wasn’t this drs specialty and he would have to be referred by a Mayo dr. Hopefully we can get that done tomorrow when he sees his cardiologist there. As a triple negative breast cancer patient, I have seen drs. in several depts. and have no trouble getting referred to another by my oncologist there. We are also on Medicare if that seems to make a difference. I know we can’t get into Mayo primary care being on Medicare....tried that when we got fed up with local drs. So it doesn’t seem to make a difference that you are an established Mayo patient. You have to be established in a particular Dept. to get an appt. We drive for 1 1/4 hrs. for these appts so it made sense to have local primary care drs. Big Mistake....huge mistake. They are just getting too busy to handle the volume of patients is my guess but it is very frustrating to say the least.

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1 reply
jeffrapp | @jeffrapp | Sep 14, 2019
In reply to @burningfeetinphoenix "Mayo Phoenix said they are much smaller than Jacksonville and Minnesota and that there is a..." + (show)
@burningfeetinphoenix

Mayo Phoenix said they are much smaller than Jacksonville and Minnesota and that there is a waiting list but I cannot get on it because I am on Medicare and they are not taking Medicare although it says they do. The lady I spoke with told me to try Jacksonville. I wanted to "self pay" but she said they will not take my $$$ because I have a Medicare number. Go figure! Pam

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I was also denied by Mayo Scottsdale because they are “not taking anymore MediCare pts.”
I’m not sure that is even legal, since they do have mediCare pts. now

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burningfeetinphoenix | @burningfeetinphoenix | Sep 14, 2019

Hi @jeffrapp...Do you live in Arizona? I ask because I also have an appointment in October with a neurologist at Phoenix Neurological Associates in Phoenix. It is interesting in that they have two clinical trials going on for idiopathic SFPN. One, as I recall, is being done in conjunction with with Harvard University...I'd like to get in on the trial but have been waiting months to get in there to just see a Dr..must be a lot of folks out there with neurological problems in the Phoenix area! Pam.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @burningfeetinphoenix "Thanks @rwinney...is your SFPN idiopathic? All I have is a biopsy report. I have not seen..." + (show)
@burningfeetinphoenix

Thanks @rwinney...is your SFPN idiopathic? All I have is a biopsy report. I have not seen a real Dr yet (podiatrist only who I still believe are not real Drs and he is basically doing nothing than trying to give me $2,500.00/treatment Exosome injections. I declined as he claims this will regenerate the nerves but if I have SFPN the nerves will only be destroyed again if, for example, I have an autoimmune or genetic cause of the condition... SFPN is not a foot problem, it is a neurological problem that affects other parts of the body. So basically I have not seen a real Dr yet...my experience with Drs is limited so I figure go for the best if possible, Pam

Jump to this post

Always go for the best if able. My underlying cause is B12 deficiency. May I ask who performed your skin biopsy?

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @cwm1 "Well, I can tell you that Mayo Jax is no better as far as denying patients...." + (show)
@cwm1

Well, I can tell you that Mayo Jax is no better as far as denying patients. Neurology wouldn’t see my husband because it had been over 3 years since he had seen a neurologist there. Just this last week, he was actually given an appt with a gastro dr and they called back and cancelled it. He had an endoscopy and colonoscopy by a dr in that Dept. just in May. But he is having issues with his hemoglobin count and his local hematologist referred him back to that gastro. He was told that wasn’t this drs specialty and he would have to be referred by a Mayo dr. Hopefully we can get that done tomorrow when he sees his cardiologist there. As a triple negative breast cancer patient, I have seen drs. in several depts. and have no trouble getting referred to another by my oncologist there. We are also on Medicare if that seems to make a difference. I know we can’t get into Mayo primary care being on Medicare....tried that when we got fed up with local drs. So it doesn’t seem to make a difference that you are an established Mayo patient. You have to be established in a particular Dept. to get an appt. We drive for 1 1/4 hrs. for these appts so it made sense to have local primary care drs. Big Mistake....huge mistake. They are just getting too busy to handle the volume of patients is my guess but it is very frustrating to say the least.

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Here, here! Supply and demand...they cant keep up which narrows down the field to only providing for rare and undiagnosed difficult circumstances. Just my opinion.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @burningfeetinphoenix "Mayo Phoenix said they are much smaller than Jacksonville and Minnesota and that there is a..." + (show)
@burningfeetinphoenix

Mayo Phoenix said they are much smaller than Jacksonville and Minnesota and that there is a waiting list but I cannot get on it because I am on Medicare and they are not taking Medicare although it says they do. The lady I spoke with told me to try Jacksonville. I wanted to "self pay" but she said they will not take my $$$ because I have a Medicare number. Go figure! Pam

Jump to this post

"Medicare For All" ...may not be the way to go afterall, huh?! Ughh

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