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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@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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@lorirenee1, kansas girl, et al: there was a very informative enlightening article in the 1/21 issue of “Wired” magazine which I read online. It explains the stigma and negativity associated with the drug and also the benefits of the plant which is soon to be legalized in one of the Asian countries in which it is grown and has been used for centuries for medicinal reasons.

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@helennicola

@lorirenee1, kansas girl, et al: there was a very informative enlightening article in the 1/21 issue of “Wired” magazine which I read online. It explains the stigma and negativity associated with the drug and also the benefits of the plant which is soon to be legalized in one of the Asian countries in which it is grown and has been used for centuries for medicinal reasons.

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@kansasgal I would buy their smallest packet of Maeng Da. It is a 1 ounce packet, if I remember their smallest packet amount. But you will be correct in buying the smallest packet size they offer. That way, you won't lose too much money if you do not like it. Remember too, that sometimes the wrong Kratom may not work for pain at all. If one does not work, try another. But from Happy Hippos SLOW strains. I would start at about 2 grams, and work up if needs. Use the least to get rid of pain. You will find your "sweet spot" in the amount that works for you. I usually take 4 to 5 grams per each time I use it. Mix in water, and swallow as fast as you can. In about 15 minutes or so, pain will go away. Good luck….Lori Renee

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@helennicola

@lorirenee1, kansas girl, et al: there was a very informative enlightening article in the 1/21 issue of “Wired” magazine which I read online. It explains the stigma and negativity associated with the drug and also the benefits of the plant which is soon to be legalized in one of the Asian countries in which it is grown and has been used for centuries for medicinal reasons.

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Kansas girl….I will check it out. Thanks, Lori

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Hi. I also have achy legs, especially at night that literally prevents me from sleeping. I take a lot of CBD oil and B vitamins and have massage therapy but truthfully nothing works. During the day the pain subsides but I always have the weakness and heavy leg feel as well. I tried Gabapentin but does not work for me and I took 1 Pregabalin 25 mg once and it blurred my vision so I never took anymore but I am considering trying this again as I read it is very helpful for some people with pain. What works best for you.

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@ecc79

Hi. I also have achy legs, especially at night that literally prevents me from sleeping. I take a lot of CBD oil and B vitamins and have massage therapy but truthfully nothing works. During the day the pain subsides but I always have the weakness and heavy leg feel as well. I tried Gabapentin but does not work for me and I took 1 Pregabalin 25 mg once and it blurred my vision so I never took anymore but I am considering trying this again as I read it is very helpful for some people with pain. What works best for you.

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Hello there. Interestingly enough, last night I forgot my Pregabalin (Lyrica) dose 100 mg 2x day and was 7 hours past due. My body fired up beyond its normal craziness and I thought….Wow, it really does work for certain things!
My only advice on the side effects is that often we have to tough it out in order to get to find the benefit of the drug. As long as you give it a committed try, then determine if you can't or haven't acclimated enough to continue for its benefit. Trial and error I'm afraid. Good luck.

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@rwinney

Hello there. Interestingly enough, last night I forgot my Pregabalin (Lyrica) dose 100 mg 2x day and was 7 hours past due. My body fired up beyond its normal craziness and I thought….Wow, it really does work for certain things!
My only advice on the side effects is that often we have to tough it out in order to get to find the benefit of the drug. As long as you give it a committed try, then determine if you can't or haven't acclimated enough to continue for its benefit. Trial and error I'm afraid. Good luck.

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Also, heat is my savior. I have pliable heat packs and wrap my legs from top to bottom. Then wrap a blanket tightly around my straight legs. Eventually they settle down almost to dead state and I never want to move again. It's not always fool proof but what is?

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@rwinney

Also, heat is my savior. I have pliable heat packs and wrap my legs from top to bottom. Then wrap a blanket tightly around my straight legs. Eventually they settle down almost to dead state and I never want to move again. It's not always fool proof but what is?

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Thank you, yes I will give the Lyrica a good honest try

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Lyrics made my hair fall out, including my eyebrows and eyelashes. It did not help my pain, so after almost two years, I stopped using Lyrica. High doses of gabapentin help me now.

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@albiet

@rwinney how much lyrica are you on. How long did it take to feel it’s effects ? Any side effects?

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Hello. Looking back it appears I neglected to respond to your question. I'm sorry.

I was on Lyrica CR (controlled release) 165 mg for several months and it did help. Expensive drug therefore I utilized a co-pay card to be able to afford it. I began Medicare January 2020 and am now ineligible for co-pay cards. My new insurance will not cover this version of Lyrica so I've switched to Pregabalin (generic Lyrica) and take 100mg 2 x day.

Side effect for me was drowsiness however, I've acclimated and tolerate it well.

Be well –
Rachel

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@rwinney

Hi Lori Renee

Thank you so much for your thoughtful response. I do appreciate it. I agree with where you are coming from regarding stretching. You have some good ideas. I stretch my legs now as it feels good, also hold them straight up (the wall excercise) to get blood flowing down. These things give temporary relief but have yet to be long term.

I began having electric shocks and sunburn sensations in my calves about 6 months ago. That was followed by bouts of my legs feeling like a cold flush was running down them.

On several occasions, mainly at night, my legs would go completely numb and feel dead. They began aching in June, which may break a day here or there. In addition to occasional waves of numbness, they also experience cramping, as have my arms. No rhyme nor reason to any of this mind you.

Sorry, don't mean to bore you with all the details but I desperately hope someone out there will validate what I'm experiencing and say, "yeah, me too!" Comfort in numbers I suppose.

I have so much nonsense throughout my body and this describes only my legs. I'll save another "new discussion" for a different day.

I'm really not a complainer nor a drama queen but this week has got me good.

Thanks again for listening. I wish you relief today. Best wishes.
Rachel

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Preaching to the gallery. My right calf has just about disappeared, I have trouble getting up if I’m on my knees and I get pain so bad at night I just want to take a hammer and beat my legs. I’m tired from getting the attacks 2-3 nights a week and waking up in the morning wondering where my legs are.

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