Aching legs from Small Fiber Neuropathy

Posted by rwinney @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

@iceblue

That freaks me out a bit. When diagnosed a few months ago, the FIRST question I asked the neurologist was: Will this eventually impact my mobility? Am I going to end up in a wheelchair? He did not hesitate and was very confident when he said No.

My diagnosis came about when chatting with my doctor and complaining about the weight I had gained when I quit smoking several months before. He suggested I walk to help lose weight. I told him I couldn't because of my painful feet – which had been going on for years. I then mentioned that the pain was now even waking me up in the middle of the night. Next thing I knew he had referred me for a nerve conduction test, and here I am…

Sadly, I've only had this doctor for about a year, and he told me at our last visit that he will be moving :'( I *think* another doctor is taking over his practice, but I will have to double check on that when I see him for the last time.

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Please don't worry and get too far ahead of yourself. Very important to remember that each one of is different therefore so is our path. Symptoms may vary, underlying cause may vary, progression may vary. Hang in there and I'm sorry to hear of your neurologist moving. Good luck on your search fir a new one. Who knows, you may find even better! Take care.
Rachel

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I have the same feelings in my legs. The docs don’t seem to understand what is going on.

Liked by rwinney

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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 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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One thing I'd like to share is 6 oz. Topricin Fibro Cream found at CVS for $20 but, Amazon for $10-$14. It was suggested by a sweet forum member and I have been using it like crazy. It's in my budget which is helpful and I'm finding some relief with cramping. I smear it all over my shoulders, arms, hands, legs and feet. This cramping thing started about a month ago. Gnarly is the word that comes to mind, like my limbs are knotted up. Anyway, after a bath or shower helps too to apply it. I now travel with it. No long term game changer but, what is?

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@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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@rwhinney thank you.

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I haven't gotten any emails in the last few days. Is no one posting or did I get bumped off the board?

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@jager5210

I haven't gotten any emails in the last few days. Is no one posting or did I get bumped off the board?

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We're still here!

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@jager5210

I haven't gotten any emails in the last few days. Is no one posting or did I get bumped off the board?

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Have you checked your spam folder? Email providers are getting tougher on spam which can cause a lot of emails that come from places like Mayo Clinic Connect to be classified as spam.

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@jager5210

I haven't gotten any emails in the last few days. Is no one posting or did I get bumped off the board?

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Hi @jager5210
As @johnhans suggests, please check your spam folder first.
If you’ve been participating in discussions on Mayo Clinic Connect and suddenly it seems they all dried up — no more email notifications — it might be your email client.

Email notifications from Connect may be going to spam or bouncing, stopping all emails from appearing in your inbox. But it’s fixable, and here’s how.

– How to add Connect to your Safe Senders List https://connect.mayoclinic.org/page/about-connect/newsfeed-post/what-to-do-if-you-arent-getting-connect-email-notifications-anymore/

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@colleenyoung

Hi @jager5210
As @johnhans suggests, please check your spam folder first.
If you’ve been participating in discussions on Mayo Clinic Connect and suddenly it seems they all dried up — no more email notifications — it might be your email client.

Email notifications from Connect may be going to spam or bouncing, stopping all emails from appearing in your inbox. But it’s fixable, and here’s how.

– How to add Connect to your Safe Senders List https://connect.mayoclinic.org/page/about-connect/newsfeed-post/what-to-do-if-you-arent-getting-connect-email-notifications-anymore/

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That happened to me and finally I went into spam and transferred a bunch back into inbox. I am now getting them again.

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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.

Liked by rwinney

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@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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@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

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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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@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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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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