Small Fiber Neuropathy?

Posted by elsa @elsa, Jan 23, 2019

Hello. I'm a 64 year old woman who has a complex medical history. I have relapsing-remitting MS (diagnosed in 2006, well-controlled; on Copaxone). I also ruptured my L5-S6 disc in 2009, subsequently had a microdiscectomy during which the surgeon tore the dura. Since the surgery, I developed chronic pain which worsened with time. Last March I graduated from Mayo's 3-week pain management program. Since then I no longer take any opiates or benzodiazepines which has been a huge step for the better.
That said, in the past few months my pain has spread and changed in nature. I now have bilateral burning sensations in my buttocks and hamstrings. This new pain seems to be burning in the outer part of my skin. It burns whenever I'm sitting or lying down. Any pressure at all on these areas causes really awful burning sensations. I am wondering if I have developed small fiber neuropathy.
Questions: 1) Does my description of this new pressure-sensitive, burning pain sound like it's SFN? 2) I notice that there is some discussion about immunity and SFN. Could my having MS (an autoimmune disease) somehow be causal in the development of SFN? 3) Can anyone recommend a doctor at Mayo in Rochester who could examine me and do the proper tests to hopefully diagnose what's going on?
Thank you much!!
--Elsa

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@burningfeetinphoenix

@lorirenee1 Where do you get Kratom and what form - how do you take it? I ordered it once and it tasted so bad I sent it back. Can you put in a smoothie or something. Capsule form? Tea? In Florida they have Kratom bars where you can order up a drink that tastes good (probably has sugar!). My Sister goes there and gets it for back/leg pain (scoliosis). She swears by it. It is illegal in Arizona. Pam

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@burningfeetinphoenix I get kratom on line at cbdkratomshops.com You order MaeDoeng Kratom for pain. I like the green, and the white Mae Doeng for pain. I might have spelled this wrong. I buy it in powder form. I put about 3 teaspoons of it in about six ounces of water, and stir it up. It is pretty strong stuff, so I just gulp it down, and then take a hard candy to get rid of the taste. For me, the results are worth the bad taste. I literally gulp it down, very quickly, and done. I know people make tea from it, but I like to just chug it down. Oh, you cannot get it? I just read that. what a shame, because it works well for pain. Have your sis get you some of the real stuff at my website.... Lori Renee

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@steeldove I have researched Kratom extensively. Deaths from Kratom were mostly from kids being irresponsible with it, and having other chemicals in their system. I have learned to take the very least amount, to get the effect I need. I have never had an adverse reaction, and it helps immensely. There are as many positive reviews of Kratom as negative reviews, and I have such bad neuropathy that I am willing to try what works. Kratom works. I treat it with the respect it deserves. Lori Renee

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@lorirenee1 Thanks Lori! I am going to order some... Pam

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@steeldove

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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@steeldove This article was the best one I've seen on SFN! Thanks for sharing...Pam

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@lorirenee1 One more thing. Are the capsules as effective as drinking it? Pam

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@burningfeetinphoenix

@lorirenee1 One more thing. Are the capsules as effective as drinking it? Pam

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@burningfeetinphoenix Hi Pam, I did not think they could be, so I went right to the powder. However, I do not know for sure. I know when I take the powder, within about 5 minutes, or less, I can feel the Kratom. I just bite the bullet, and chug it down. Not so bad. Just take a piece of hard candy afterwards. I like Kratom more than marijuana because I only get very tranquil, not high. I save marijuana for when I have had just a horrid foot day, and need to escape completely. Is that just sad, or what? Can you get Kratom? I am confused..... Lori Renee

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@lorirenee1

@burningfeetinphoenix Hi Pam, I did not think they could be, so I went right to the powder. However, I do not know for sure. I know when I take the powder, within about 5 minutes, or less, I can feel the Kratom. I just bite the bullet, and chug it down. Not so bad. Just take a piece of hard candy afterwards. I like Kratom more than marijuana because I only get very tranquil, not high. I save marijuana for when I have had just a horrid foot day, and need to escape completely. Is that just sad, or what? Can you get Kratom? I am confused..... Lori Renee

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@burningfeetinphoenix Pam, I just had another thought about the capsule. There is much less Kratom in a capsule, than what I take. I take 3 teaspoons per dose. I am 5 feet 3 inches tall, and weigh 155 pounds. I am telling you this, because you have to figure out how much to take, for your body size, and how you respond. The RULE is to take the least amount you can, for the desired effect you want. Different companies have different quality and types of Kratom. I have tried different companies. One had Kratom that had no effect on me at all. The company I posted seems to work best for me, and I have no side effects. I like that I have been in their shop, and it is busy, clean, and has great people working there. The place is "real," and people love it there. Green Mae Doeng Kratom. Spelled wrong, works right! Lori R.

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@lorirenee1 I can order it online as I did before when I ordered the tea. It just cannot be sold in Arizona. I think the White Mae Da looks like it is targeted for serious pain. Is this what you recommend? Pam

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@burningfeetinphoenix

@lorirenee1 I can order it online as I did before when I ordered the tea. It just cannot be sold in Arizona. I think the White Mae Da looks like it is targeted for serious pain. Is this what you recommend? Pam

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@burningfeetinphoenix Hi Pam, For me, the green Mae da works the best. But white is also very good. Everyone is different. They do have a sampler of all the Mae Doeng in one package. You could try all of them. I bought the Red Mae Dong, but it did not work well. However, I am going to try it again, because I have some left. Remember to try the least, and work up. Also, drink a lot of water, and best on an empty stomach. However, sometimes I eat, and it still works. Be a trooper, and just gulp down the stuff. Probably works the best. I actually dislike the taste of CBD oil even more than the Kratom. Ya do, whatya gotta do. Let me know what you think!!!! Good luck, and keep in touch! Lori R.

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In addition to the Mayo Clinic article @steeldove posted on Kratom, I'd like to offer this note from a Mayo Clinic pharmacist:

Kratom is a natural product but it does have significant risks and side effects. Because of these risks the FDA banned import of Kratom in August 2016 and issued a notice of intent to classify 2 chemicals in Kratom as Schedule 1 drugs (the same category as heroin). There are no FDA-approved uses for kratom, and the agency has received concerning reports about the safety of kratom. FDA is actively evaluating all available scientific information on this issue. (2019) https://www.fda.gov/news-events/public-health-focus/fda-and-kratom

Kratom can cause dependence and withdrawal symptoms including aggression, anxiety and other negative psychiatric effects, muscle aches, spasms, tremors, insomnia, fever and upset stomach. It can also cause dangerous slowed breathing and seizures. It can worsen psychiatric disease and may increase the risk of suicide. Kratom can impair liver function. Kratom interacts with other herbal medications including Jimson Weed. It interacts with sedating medications. It has the potential for many other drug interactions because of the way it is metabolized.

For more information see:
– National Institute of Health: Drug Facts, Kratom https://www.drugabuse.gov/publications/drugfacts/kratom
– Center for Disease Control https://www.webmd.com/mental-health/addiction/news/20190411/cdc-americans-are-dying-from-kratom-overdoses#1

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