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!

Thanks! Good to know. I just started using PEA cream yesterday…Pam

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Amazon has it and I believe you can get it at a feed store. I believe DMSO is used for horses, for painful ligaments. I got my PEA cream from Vitalus. They also have 100% pure PEA capsules packaged individually in sealed packets. I purchased that also. That you can get on Amazon but one has to order the cream directly on-line from Vitalus..Vitalus has free shipping too. .I am not going to take the DMSO until I see if the PEA works. Want this to be a "clinical trial of one" – me!! Anyone else want to participate? Pam

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@burningfeetinphoenix

Amazon has it and I believe you can get it at a feed store. I believe DMSO is used for horses, for painful ligaments. I got my PEA cream from Vitalus. They also have 100% pure PEA capsules packaged individually in sealed packets. I purchased that also. That you can get on Amazon but one has to order the cream directly on-line from Vitalus..Vitalus has free shipping too. .I am not going to take the DMSO until I see if the PEA works. Want this to be a "clinical trial of one" – me!! Anyone else want to participate? Pam

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I may Pam but first curious of the cost?
Rachel

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@burningfeetinphoenix

Amazon has it and I believe you can get it at a feed store. I believe DMSO is used for horses, for painful ligaments. I got my PEA cream from Vitalus. They also have 100% pure PEA capsules packaged individually in sealed packets. I purchased that also. That you can get on Amazon but one has to order the cream directly on-line from Vitalus..Vitalus has free shipping too. .I am not going to take the DMSO until I see if the PEA works. Want this to be a "clinical trial of one" – me!! Anyone else want to participate? Pam

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@burningfeetinphoenix
Hi, Pam… for what it's worth, I found the following on WebMD regarding DMSO, and it was enough to keep me from giving it a try:
"There is concern that some non-prescription DMSO products might be "industrial grade", which is not intended for human use. These products are POSSIBLY UNSAFE, as they can contain impurities that can cause health effects. To make matters worse, DMSO readily penetrates the skin, so it carries these impurities rapidly into the body.

"Some side effects of taking DMSO include skin reactions, dry skin, headache, dizziness, drowsiness, nausea, vomiting, diarrhea, constipation, breathing problems, vision problems, blood problems, and allergic reactions. DMSO also causes a garlic-like taste, and breath and body odor."

There also is a lengthy warning about its interactions with other drugs taken.

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@resawaller

I set here day after day with no relieve from nerve pain ! I don't think I can take another day of it! Do people in so much pain they can't think straight go to hell if they end their own life???

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@resawaller I understand what you're feeling, as I've been in the same place. I'm a retired pastor, ordained with a conservative denomination. I've counselled people affected by suicide, and I went through a very dark depression for 7 years, and still am being treated for depression and other things. During the darkest time I attempted suicide several times. I'm grateful to have that level of suicidality behind me, but I have to acknowledge that it's not far beneath the surface of my thoughts.

Years ago I thought that believers should be able to have victory over mental health issues. While I still believe that, life has taught me that it isn't the same for everyone. Many people suffer far more than I will ever experience. How do they keep going? A good question that each person has to answer in their own way.

I know that many well intentioned people think that because suicide would be your final act in this life, it's a sin (murder) and it can't be forgiven because there's no opportunity to repent. And since sin cannot enter heaven, suicide, which those people would call murder, which is a sin against the ten commandments, prevents one from entering heaven.

I'm extremely grateful that God is a merciful God, certainly more merciful than we humans. Therefore, I believe that if we are truly followers of Christ, as Paul wrote in a letter to the Galatian church, nothing can separate us from the love of God. (Or maybe it's Romans.)

If we were to follow it through, if a person who commits the sin of suicide, none of us would qualify for entrance to heaven, because every one of us has committed some sort of sin. And if any sin disqualifies us, we are guilty of limiting God's unlimited grace.

Sorry this is becoming my sermon notes, but it's hard to answer your question with one or two words. I hope that what I've said will at least put to rest the fear of being shunned by God.

I'm certainly not advocating suicide. Don't misunderstand me. It's seldom the right solution to our pain, but I strongly disagree with the notion that it's an automatic ticket to hell.

Do you know who Rick Warren is? He's the pastor of a large church whose son committed suicide a couple of years ago. You might see if you can find what he and his wife, Kay, have to say about this.

In the meantime, I pray and believe that you will be able to allow yourself some time to consider all of this. Maybe you will do what I've been doing for the past 17 years – start by saying I'll be safe for one more day. As time goes by, I think that you'll be able to move that goal a little farther off. Right now, I'm able to commit to staying alive until Thanksgiving, when I get to see my brand new granddaughter. Don't worry about how big or small your projected goal is. It might be one hour right now, and that's ok. I believe it will get better.

Jim

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@elizm

@resawaller
I hear your plea, and I can relate to your despair. Chronic pain does contribute to depression.

Firstly, take some action. Order some Palmitoylethanolamide (PEA) from Amazon. Take 400 mg. in the morning, midday, and bedtime. Also order some Topricin Fibro Cream from Amazon and use it whenever. Both are natural products which get me through the tough days (which are most days). The PEA will take about 3-4 weeks for you to feel a BIG difference, so don't give up on it. Will it work for Regional Pain Syndrome the way it does for peripheral neuropathy pain? I don't know. I have chemo-induced PN and it works for me.

There also is evidence that taking 2 grams/day (and not more) of a good Omega-3 fish oil can help with depression. Also available on Amazon.

Secondly, I am assuming that, if you believe in hell, then you believe in God. The thing about faith is trust in God. Perhaps your post here is God speaking to you… telling you to share your concerns with others. And the thing to remember about God is that s/he loves you and all her/his creations more than anything that we can imagine. I believe that with all my heart and mind. I personally don't believe that God allows bad things to happen to people, but God does help us get through our crises and afflictions. Ask for God's help. Keep asking.

Thirdly, and I'm speaking again for myself, it has helped for me to get out into the community and help others who are suffering more than I am… and really listening to them… making good use of the compassion we are acquiring from our own suffering.

And lastly, but certainly not least, a good psychologist or pain therapist is helpful. Ask your PCP or church minister for recommendations. Cognitive behavior therapy is very helpful, as well as meditation, controlled breathing, etc.

Realize that you are in a deep funk and be determined to climb out of that hole. Life is so precious… YOU are so precious.

Blessings, Liz

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Hi Liz…Thanks so much for suggestions and positive energy. Got the 100 percent PEA from Vitalis and am upping my dosage. Have the cream from them also. I've already said my condition is better just knowing Mayo Connect is out there.! Pam

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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

Liked by rwinney

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@burningfeetinphoenix
Hi, Pam

The PEA capsules basically have saved my mental health as I contend with chemo-induced PN burning in my feet, legs and hands. I have not tried the cream and will be interested to hear about your experience with it. I do use Topricin's Fibro Cream (two 6 oz. tubes on Amazon for ap. $29), especially at bedtime, and it has proven invaluable for me. Let me know how the PEA cream works out for you. – Liz

Liked by rwinney

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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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@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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Interesting. Do you know why they denied you?

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@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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@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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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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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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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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