Ideas for pain relief from Small Fiber Neuropathy (SFN)

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

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

I may Pam but first curious of the cost?
Rachel

@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.

@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

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

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

@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

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

Interesting. Do you know why they denied you?