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 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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@lisalucier

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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Too risky for me.

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@rwinney

I combine those two meds with 5mg hydro/325 acetaminophen and 1000 mg intravenous lidocaine infusion.

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Hi! I’m from Wisconsin, trying to figure out how/where to get lidocaine infusions for CRPS, RA, Fibro etc. Does your pcp prescribe your lidocaine infusions? Do you have them at the hospital? So many questions! Lol.

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@gashmell

Hi! I’m from Wisconsin, trying to figure out how/where to get lidocaine infusions for CRPS, RA, Fibro etc. Does your pcp prescribe your lidocaine infusions? Do you have them at the hospital? So many questions! Lol.

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Hello and always happy to help. Great questions. I have Small Fiber poly neuropathy and my Neurologist prescribed lidocaine infusions for pain. They are given in the Apherisis unit of a hospital. Usually a university hospital or big city hospital.

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Thank you! The difficult part for me won’t be getting it prescribed I don’t think, but having to drive so far from home for treatments and having no one to help me with travel and childcare if I need to be gone overnight. I’m hoping to find something closer to home possibly Wausau or Green Bay Area. I can’t figure out how to find clinics that actually DO the infusion so I can get a referral for it. Is there a resource available for that? Thank you!

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@gashmell

Thank you! The difficult part for me won’t be getting it prescribed I don’t think, but having to drive so far from home for treatments and having no one to help me with travel and childcare if I need to be gone overnight. I’m hoping to find something closer to home possibly Wausau or Green Bay Area. I can’t figure out how to find clinics that actually DO the infusion so I can get a referral for it. Is there a resource available for that? Thank you!

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Well, perhaps googling "closest Apheresis unit" or having a sit down visit with your Neurologist. Dr should be in your best interest and do the work for you.

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