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Aching legs from Small Fiber Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Oct 23, 2019

One of my relentless symptoms from neuropathy is profusely aching legs. Does anyone share this symptom with me? At times I wonder if it could be another issue. They hurt so bad and create pain when walking continuously. Both legs feel heavy, tired and can't get much mileage. When I walk it's as though they are full of lead and they make me go at a turtles pace. If I stop and don't move they may settle a bit but then same old situation as I walk again. Only relief is being elevated and wrapped with heat or soaking in warm water. That buys me maybe a half hour or an hour tops. Same goes for any topicals. A tight wrap feels good almost like a weighted blanket does. Something about tightening the muscles does too.
I appreciate comments or feed back you may have to share on this.
Thanks all,
Rachel

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betty1954 | @betty1954 | Nov 13, 2019

Rachel I am a walker and I used two walking sticks due to legs hurting and balance problems. Walking does give me relief though. I try to get over 4 miles a day. I also have a bar in my back along with the neuropathy. I do not see a neurologist any more. I see my PCP and my pain doctor. I use a lot of essential oils from DoTerra to easy the pain and heaviness. Copaiba has been a lie changer for me and their new Adaptiv for calmness. When my muscles get to jumping the Adaptiv will calm them down. What ever you do don't give up your walking. If we don't use it we lose it.

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1 reply
albiet | @albiet | Nov 13, 2019
In reply to @rwinney "Hello and sorry to have missed your question 2 days ago. I take 165 mg 1..." + (show)
@rwinney

Hello and sorry to have missed your question 2 days ago. I take 165 mg 1 x day of Lyrica Controlled Release with dinner. Only thing I ever had was maybe being tired but I overcame it. I had been on Gabepentin 2 years ago briefly for neuritis after cervical radio frequency ablation. Then months layer tried regular Lyrica for other nerve pains and burning which I associated from continous occipital and cervical ablations. Eventually off Lyrica again due to cost then finally diagnosed with SFN and realized there was no way around being on a nerve medication so my neurologist went right to Lyrica CR. He's a bit of a "bleep" so never explained why the CR version over regular Lyrica but I'm happy with it being once a day verses multiple doses per day. Hope this helps you. Have a happy Sunday!
Rachel

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@rwinney Thank you. The dr I spoke with today wants me to go on lyrica. I think they just came out with generic so that will probably be what I’d have to take. I told him to need a few days to think about it. I also asked him about steroids which he gave me an earful on not taking them. However after decuaaaiin he prescribed me a 5 or 6 days supply kit from the pharmacy so I have to think about trying that

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 13, 2019
In reply to @albiet "@rwinney Thank you. The dr I spoke with today wants me to go on lyrica. I..." + (show)
@albiet

@rwinney Thank you. The dr I spoke with today wants me to go on lyrica. I think they just came out with generic so that will probably be what I’d have to take. I told him to need a few days to think about it. I also asked him about steroids which he gave me an earful on not taking them. However after decuaaaiin he prescribed me a 5 or 6 days supply kit from the pharmacy so I have to think about trying that

Jump to this post

Definitely think it over and you may feel better about your decision. I've learned to try hard and keep an open mind...if you close the door in your mind then you close the door in your body and don't allow for time and acceptance of new medicine to help. Spoken from my own mistakes. 😣

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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 13, 2019
In reply to @betty1954 "Rachel I am a walker and I used two walking sticks due to legs hurting and..." + (show)
@betty1954

Rachel I am a walker and I used two walking sticks due to legs hurting and balance problems. Walking does give me relief though. I try to get over 4 miles a day. I also have a bar in my back along with the neuropathy. I do not see a neurologist any more. I see my PCP and my pain doctor. I use a lot of essential oils from DoTerra to easy the pain and heaviness. Copaiba has been a lie changer for me and their new Adaptiv for calmness. When my muscles get to jumping the Adaptiv will calm them down. What ever you do don't give up your walking. If we don't use it we lose it.

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Thank you for your reply. I continue to do my best with what I've got. 👍🏼

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Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 22, 2019

Thought you all might enjoy getting to know one of the members in this "Aching Legs from SFN" discussion a little more. Please take a moment to read the Connect member spotlight on @johnhans, https://connect.mayoclinic.org/page/about-connect/newsfeed-post/encouraging-others-by-letting-them-know-ive-made-it-meet-johnhans/. If you'd like, share it with others on your social media accounts.

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kansasgal | @kansasgal | Dec 16, 2019
In reply to @lorirenee1 "@helennicola Hi Helen, It is happyhippoherbals.com So sorry. Had no idea it had herbals in the..." + (show)
@lorirenee1

@helennicola Hi Helen, It is happyhippoherbals.com So sorry. Had no idea it had herbals in the address. I live in Illinois. I know there are 5 states in which kratom is not allowed, but I do not know which ones, other than Wisconsin. If you order, order the slow strains that allude to pain relief. I am not sure if they say it directly. Also, anything called a Maeng Da, works for pain, even if it says it is a fast strain. Maeng Da is where the tree comes from in Asia. Maeng Da strains are great for pain. Happy Hippo has kind of a silly way of marketing the plant. I can tell you exactly what I buy, if you want to know. I also have another great company I buy from, right here in Illinois. They are also on line, but I do not know their address off hand. I can get it for you if you want it. I tend to go to their store. Fabulous. Good luck. Try some..... Lori Renee

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I want to try Maeng Da from Happy Hippo, how much do you take a day? Wondering how much to order. Thank you! Kristen

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3 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 17, 2019
In reply to @kansasgal "I want to try Maeng Da from Happy Hippo, how much do you take a day?..." + (show)
@kansasgal

I want to try Maeng Da from Happy Hippo, how much do you take a day? Wondering how much to order. Thank you! Kristen

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Hi, @kansasgal - since Maeng Da is a type of kratom, I wanted to be sure and point out the following:

- The post by @colleenyoung talking about Kratom and possible side effects
https://connect.mayoclinic.org/discussion/intractable-pain-ip-doctors/?pg=1#comment-316645
- mayoclinic.org Healthy Lifestyle information on Kratom https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/kratom/art-20402171

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james4753xerxes | @james4753xerxes | Dec 21, 2019

I’m wondering if someone could recommend shoes that have stability

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1 reply
lorirenee1 | @lorirenee1 | Dec 21, 2019
In reply to @kansasgal "I want to try Maeng Da from Happy Hippo, how much do you take a day?..." + (show)
@kansasgal

I want to try Maeng Da from Happy Hippo, how much do you take a day? Wondering how much to order. Thank you! Kristen

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@kansasgal I would start out with the smallest package of it that you can get, and maybe get a few strains to switch off with. Check the slow strains that say they are for easing discomfort. Take the smallest amount you can, and still get relief. If you feel nothing from it, try a bit more. I would start at about 1 gram, or so, and see what happens. I take about 5 grams at a sitting, but I only take it when my pain is excruciating. I have found that Kratom is absolutely the only thing that really works for pain. There is nothing like it. But you have to play around with it, to find the right amount. Just mix into water, and chug it down. It is quite vile tasting, but I use my sense of humor and just knowing I will be pain free in about 10 minutes or so. Good luck, and your pain will be better. Lori Renee

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Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 22, 2019
In reply to @james4753xerxes "I’m wondering if someone could recommend shoes that have stability" + (show)
@james4753xerxes

I’m wondering if someone could recommend shoes that have stability

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Hi, @james4753xerxes - here's one Connect thread you may want to check out about neuropathy and shoes https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/?pg=12#comment-321496

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