Mayo Clinic Connect
How have you received enough physical exercise while dealing with neuropathy?? Do you walk in spite of the condition; tiptoe to get around; particular exercise program, etc.?
Liked by Teresa, Volunteer Mentor, johnhans, Chris Trout, Volunteer Mentor, lioness ... see all
Hello @whirleybirdie, welcome to Mayo Clinic Connect. I'm tagging our moderator @lisalucier to see if we should combine your post with the following discussion where you will receive more visibility and can meet other members with neuropathy that can share their thoughts and experiences on your question.
> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
I have small fiber peripheral neuropathy in my legs and feet. Although I am unable to walk for long distances anymore I try to walk some every day and use an elliptical or recumbent bike for 30 minutes a day. I think you need to exercise as much as you can without over doing it — especially if you are having pain in the feet or legs when you walk. Do you enjoy walking or is it hard for you? Are you able to share a little more about your neuropathy?
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Good morning John, I have a Fitbit and my goal is 2500 steps a day and I have been exceeding that as I am spending the winter with my daughter and she walks with me.
I am taking Gabapenton for my neuropathy and it seems to be helping.
My toes tingle at night but my the front of my legs are hot and ache at night. I honestly don’t even know I have neuropathy during the day.
Liked by John, Volunteer Mentor
I have been walking everyday and try to get 2500 steps in.
Liked by John, Volunteer Mentor, Chris Trout, Volunteer Mentor
Good morning @whirleybirdie, that's great that your daughter is able to walk with you. It's also good that you don't even feel like you have neuropathy during the day. Have you talked to your doctor about possibly taking part of your daily Gabapentin dosage at night to see if that might help with the night symptoms with your legs? I think there are some other members who have mentioned taking a partial dosage before going to bed.
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@johnbishop I take, along with other meds, my daily dose of Clonazepam at bedtime. It keeps me from acting out my dreams, especially dreams that involve kicking and punching.
Oh my Chris…what I meant by that: I was told by two docs to “stay off my feet” which to me translated as, “don’t walk, don’t play, don’t do anything on my feet; sit or lay down, stay put, i.e., don’t walk.” Plus, I just cannot walk but a few steps till I cannot tolerate the pain anymore. I’m on the early-end of my journey w/ this condition with no “track record” yet.
You’ve worked hard to walk! In the short few days I’ve been on Connect have learned that walking is good.
You are not doing anything wrong—yikes no! Keep-on-keepin’-on with what’s working for you. All the Best!
Happy 2020 @southwind. It's been 6 weeks since we chatted about walking. How are you doing with walking or any up on your feet exercise program? You were in learning mode and getting some help from @johnbishop. What definitive information have you accepted to help you manage your neuropathy? Please share what you have found valuable. As the New Year arrives and we move along…..it is really important for me that I apprise myself of the latest technical information for neuropathy. I am committing to three 2020 goals……or at least aspirations.
1. Complete my taper off an anti-depressant I have been taking for 4 years. I have completed 3 months as of yesterday. Now I need to stabilize and evaluate the result. Have you started or changed your medication as you learn more?
2. Travel in a plane to Texas to see the grandchildren. I haven't felt secure about doing that until I read about your scooter. Do they have those to rent for a week or two? Are you planning any adventures in 2020?
3. Continue to fight depression with Yoga, Meditation and Mindfulness practice. I had some movement this year in my ability to accept others with greater loving-kindness. It was pretty special. Do you plan to participate in any programs or retreats this year?
May you have happiness and be free of suffering. Chris
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@whirleybirdie, @johnbishop, I was strolling past this interchange and decided to add my two cents. I am one of those who takes 1200 mg of Gabapentin 2 hours before bedtime.
My toes always have some numbness but no tingles and no pain. And I no longer have the hot and cranky legs. You may want to arch them over a couple of soft pillows or rub them with a medical cannabis balm if you have access to it.
I have also found that Biofreeze actually gives you about 15 minutes of comfort and just time enough to get to sleep. Lidocaine solutions from a compounding pharmacy also work for maybe 30 minutes. They cost a lot more than Biofreeze.
Do you have “sleep starts” or shocks that start when you crawl in bed and last until the built up energy has been expended? If not then your sleep efforts won’t be disturbed by them.
I am going to set my walking challenge at 2500 steps this year. That just may be doable for me. Do you walk out in nature? What is the best time for walking for you?
Be safe and free of suffering. Chris
Please please try pure peppermint oil any time all over your legs anytime as much as u want. It heats up and goes right through the muscle and bone. Adding a heating pad helps to. U will feel it within 10-15 minutes. U can even put it in a bathtub before bed. My daughter with a 47 degree angle and her spine with scoliosis and my husband who is a disabled veteran 100% who has bone on bone in his lower back and other parts of his back or very messed up. It helps them both very much. To the point that people are starting to buy large sums from me of peppermint oil. You putting it on your legs at night should help you fall asleep easier.
Pure peppermint oil is much stronger than biofreeze. Try it. I promise. And it's cheaper and less invasive on your skin.
Awesome goals Chris!
@rwinney Hi Rachel, I love what you wrote for the New Year. So inspiring. I am hoping that on the day of your son's wedding, happy endorphins for pain will release, adrenaline will pump, and you will just manage to enjoy! A good dose of CBD may help too. I love you dancing! I too, am a dancer, from way back in Disco days. I was damn good! Just know that we are here to support eachother, and know more than anyone, what our struggles are. Have a good New Year, Rachel. Keep those flowers coming. Lori Renee
Thanks Lori Renee 😊
You know, MJ Radio gives me disco too! Love it!!! We shall keep dancing.
Hi @paulsheasby, if you click the View & Reply button at the bottom of this email notification you won't get all of the junk characters like in your previous post here. Using the email reply button will send all of the extra characters and make your post hard to read. ☺
I can not handle too much Gabapentin at 1 time because it makes me tired & sleepy so the dr. has me take 1 100 mg after breakfast & 1 in the afternoon & 300 mg at night & I sleep very well. They wanted to increase me to 200 mg at a time but I was getting headaches & nauseated so I'm just on 500 mg which is low. I don't feel it helps with the pain but I guess it does to an extent because I am functioning & doing my house work. I do notice I forget things a lot & I think that is part of the side effect. I also take Cymbalta & i think that helps me to not get depressed over this. I now wear low shoes instead of high heel & my life style has changed a lot. I'm pretty much home bound. I would talk to your dr. about it. Best of luck. Tigreyes
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I have been a part of this thread of polyneuropathy for several months. Mine is sensory and I do wonder about a connection to my first Shingrix shot. My first concern was to see if anyone has found the symptoms improve over time. But, alas, I am just living with this. I have found Gabapentin has helped with my neuro pain, the creepy/crawly feeling under the skin of my calfs and the overall pain in both legs. All my sleep symptoms disappear as soon as I am on my feet. Disordered sleep was my main problem, though now that I know what to look for I have numbness on the underside of the toes of my left foot. I have kept my Gabapentin at 600 mg. First I was dividing it to 300 mg at bedtime and 300 in the middle of the night. I have now found the 600 mg at bedtime is holding me quite well without leaving me too ‘foggy’. I also take Amitriptyline 25 mg in the evening. I have started taking this in the last afternoon as it has a half life of 20 hrs and holds me better through the night. All this to say, I am 77 yrs and have not taken much or required many meds. This is a new existence for me and I feel it is paramount to get adequate restorative sleep. I know I am on low doses of both Gabapentin and Amitriptyline and it takes a while to get adjusted. It is so difficult to be patient with these changes.
I still run on the beach 4 or 5 miles a day. It helps with pain – it distracts me, the beach is new and different every day and there are animals: we have beach foxes here as well as the usual sea gulls, sandpipers, crabs, sometimes we see dolphins, sand-sharks, sea glass, jellyfish, all kinds of stuff. I take 150 mg Lyrica at night and lately 600 gabapentin twice during the day. I tried taking lyrica during the day but it made me sleepy. Laying down and sitting down make my legs/feet worse, I'm getting those 'wasp sting-like' pains in my arms, back, and face now too. Some days it's better and I wonder what I did right but I do the same things and eat the same things every day so I haven't found anything that correlates. Some days are worse and I have to take 1/2 of a Tramadol. I'm still trying every lidocaine and cbd product but having only a few minutes of relief. I asked my Pain Doctor about low-dose naltrexone for Neuropathy – he is looking into it, we'll discuss it again next time. I will also ask him about Shingrix – I don't know what that is but I'll try anything that you guys are trying. This forum is terrific – when any new treatment for neuropathy is invented, I'm sure we will be some of the first to hear about it. Thanks, Peggy
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