Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Fri, Sep 6 4:43pm

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!

@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

Liked by rwinney

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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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@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

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

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A podiatrist in Scottsdale AZ did the biopsy. This was after he misdiagnosed me with athlete's foot then circulation problems. Sold me a bunch or foot soaking products and creams that only "he" makes. I spent about $200.00 on them to no avail. As soon as the biopsy came back (not knowing I had already researched the condition thoroughly), and I was nearly in tears, he said "no problem" we have a treatment for this. It's called Exosome injections and I can do your first one right away. He continues…"it's $2,500.00/treatment and insurance does not cover it". I already knew this and I knew that studies have only been done on mice, not humans…we I guess they have done some research and these Exosomes look promising,.. but not real double blind clinical trials. It will not be long and every pain management clinic (we have one on most EVERY corner in Phoenix) will be doing these treatments…big money in it. Chiropractors are also in on the game. Oh, and the previous podiatrist also misdiagnosed me twice. First was Morton's Neuroma and the second was Planter's Fasciitis. What is the treatment for B12 deficiency and how does get it? Pam

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I agree. My Sister who is on Medicare called Mayo when she was diagnosed with breast cancer several months ago and got an appointment at Mayo Jacksonville the next week. I guess Breast Cancer is a rare and difficult to diagnose disease? Pam

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I first went to Mayo Jax breast unit 3 years ago. I have seen a lot of dif. drs. In dif. Units and the breast unit is the best, hands down. If you call up there with a question, you WILL get a call back the same day and usually within an hr. I believe Mayo standard is 48 hrs. While I have never found a rude or seemingly uncaring employee of Mayo, the breast unit goes above and beyond the rest. When I first called up there, I also had an appt. within a week. How I wish all depts were so easy to get into and deal with.

Liked by rwinney

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@burningfeetinphoenix

A podiatrist in Scottsdale AZ did the biopsy. This was after he misdiagnosed me with athlete's foot then circulation problems. Sold me a bunch or foot soaking products and creams that only "he" makes. I spent about $200.00 on them to no avail. As soon as the biopsy came back (not knowing I had already researched the condition thoroughly), and I was nearly in tears, he said "no problem" we have a treatment for this. It's called Exosome injections and I can do your first one right away. He continues…"it's $2,500.00/treatment and insurance does not cover it". I already knew this and I knew that studies have only been done on mice, not humans…we I guess they have done some research and these Exosomes look promising,.. but not real double blind clinical trials. It will not be long and every pain management clinic (we have one on most EVERY corner in Phoenix) will be doing these treatments…big money in it. Chiropractors are also in on the game. Oh, and the previous podiatrist also misdiagnosed me twice. First was Morton's Neuroma and the second was Planter's Fasciitis. What is the treatment for B12 deficiency and how does get it? Pam

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Ahh…yes, money rules everything, unfortunately. That's why it's so important to do our own research and advocating. (I sound like a broken record!) 😊
I receive B12 injections every two weeks. It took 6 months to bring my methylmelonic level up to par. I'm currently waiting for my neurologist to advise whether or not I can switch to oral B12 supplements or do my own injections and reduce the frequency or not. I'm also having some tests done with a gastroenterologist to see if there is defining answer why I became deficient.
Rachel

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Thanks! Maybe I need my B12 tested…I thought one got tired with this deficiency? I have too much energy…Pam

Liked by rwinney

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@burningfeetinphoenix

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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Hi Burning
I don't live in Arizona, but I am happy to go there if they had accepted me. Disappointing!

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@burningfeetinphoenix

Thanks! Maybe I need my B12 tested…I thought one got tired with this deficiency? I have too much energy…Pam

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Yes, from the sounds of it you do! Haha! Rest assured you would know it. I never understood my lethargy. Could not make it up my stairs without stopping midway for a breather. Drained, exhausted and spent is the best way to describe it.

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@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 have Medicare & a 2nd Insurance & the Scottsdale Mayo Clinic does not take Medicare consignment but I has surgery at the Phoenix Mayo in 2018 & what they do is , Medicare sends you the check & you pay the Mayo Clinic but Mayo Clinic can charge up to 15% more than what Medicare pays. I have had a lot done there & I had no problems but about $10.00 out of my pocket. People are getting it confused. It is not that they don't take it but you have to go through the red tape of getting the payment from Medicare but it worked out perfectly for me & they sent me the check quickly within 3 weeks so you should look into better.

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@rwinney

Yes, from the sounds of it you do! Haha! Rest assured you would know it. I never understood my lethargy. Could not make it up my stairs without stopping midway for a breather. Drained, exhausted and spent is the best way to describe it.

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Also, Pam, your neurologist will (should) do a very extensive workup on you to search for a cause. Mine took over 4 months to conclude.

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I just researched the MediCare refusal issue. It appears doctors and hospitals can limit the number of MediCare pts. they accept.
Emotionally, I believe everyone should be eligible for health care without going into bankruptcy, but practically, I don't see how it could happen here any time soon. MediCare for all may just be a pipe dream, unless all the health care providers are forced to accept it, which would open another can of worms, since their reimbursements rates to providers are so low even now that many practices (like Mayo in Scottsdale) are not accepting it.

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