Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@summertime4

Thank you John. I have not had any tests done to confirm the diagnosis of lymphedema. A vein doctor told me just by looking at it. After some conversation I am having a CAT scan done on Friday, June 21. I hear you saying you have nothing wrong with your lymph nodes, but you are diagnosed with lymphedema? Do you have severe pain in the foot and leg affected? You are also wearing the compression stocking to bed? I cannot get the 20-30 mg on yet. Sometimes the compression hurts more and them I am told it is because of the neuropathy.

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I take the compression socks off at night. I think the explanation the doctor gave me is that the lymph system has an easier time pushing the fluids out of your body when you are laying down vs when standing or sitting. I only have numbness in my feet and just above the ankles but that is from my idiopathic small fiber peripheral neuropathy. I can tell you I definitely don't like wearing the socks but they are doing the job. The lymphoscintigram is a test that takes quite a long time. My layman's words on how they did the test -- They inject you with some radioactive dye between the toes (if I remember correctly - it wasn't painful). Then they run you through an x-ray machine after the injection to get a base line. Then you walk around for 20 minutes and come back and they do another scan to see how far the radioactive fluid has traveled in the lymph system. Then you walk around for about 2 hours and they run another scan to check the fluid progress. The scans are compared and they can look for any blockage in the lymph system.

I can see where the compression socks would cause more pain. I'm definitely ready to take them off when I go to bed.

Here's some basic info on the test:
-- https://www.radiologyinfo.org/en/info.cfm?pg=lympho

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@johnbishop Hi there! I have a question after reading about the fluids and lying down. Have you ever tried the yoga pose “legs up the wall?” Jay and I do this every morning. It allows fluids like blood to travel where they are going without gravity pulling them in the opposite direction. It also opens the little valves that control the dam so to speak. I will see what I can find for visuals. Chris

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@artscaping

@johnbishop Hi there! I have a question after reading about the fluids and lying down. Have you ever tried the yoga pose “legs up the wall?” Jay and I do this every morning. It allows fluids like blood to travel where they are going without gravity pulling them in the opposite direction. It also opens the little valves that control the dam so to speak. I will see what I can find for visuals. Chris

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Hi.
It would be great if you could send me any visuals that I can try. Thanks
Mitch@2015

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@artscaping

@johnbishop Hi there! I have a question after reading about the fluids and lying down. Have you ever tried the yoga pose “legs up the wall?” Jay and I do this every morning. It allows fluids like blood to travel where they are going without gravity pulling them in the opposite direction. It also opens the little valves that control the dam so to speak. I will see what I can find for visuals. Chris

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@artscaping Hi Chris! Nope, never have tried the legs up the wall yoga pose. I think you told me about that one before. I can't get up off of the floor without extreme difficulty so that one for me is probably not going to happen unless I get brave enough to try it. ☺

6 Benefits of Legs Up the Wall Pose
-- https://www.doyouyoga.com/6-benefits-of-legs-up-the-wall-pose-48440/

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@johnbishop......oh dear....I forgot about that challenge. Here is the image. It does tell you how to get up. I drop to one side and then get up on hands and knees. You get better at it after awhile. You stay in this pose for 5 minutes to get the real benefit. I will help you up. That might be like the blind leading the blind. Be well John.

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@mlross4508

Hi.
It would be great if you could send me any visuals that I can try. Thanks
Mitch@2015

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@miross4508, Here you go. There are instructions for getting into the pose and out of it on line. You hold it for 5 minutes for maximum benefit. Be safe and well. Chris

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@artscaping

@johnbishop......oh dear....I forgot about that challenge. Here is the image. It does tell you how to get up. I drop to one side and then get up on hands and knees. You get better at it after awhile. You stay in this pose for 5 minutes to get the real benefit. I will help you up. That might be like the blind leading the blind. Be well John.

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@artscaping I am definitely going to try this. It sounds very helpful, thanks for posting.
JK

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@artscaping

@miross4508, Here you go. There are instructions for getting into the pose and out of it on line. You hold it for 5 minutes for maximum benefit. Be safe and well. Chris

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If you don't do yoga regularly or maybe have lower back issues, try putting a firm pillow on the floor next to your hip. Now try rolling slowly onto the pillow as you swing your legs up the wall.

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Thanks @steeldove for walking people through Legs Up the Wall. It’s my “go to” whenever I’m tired or my body is cranky. I’m a regular yogi but no longer have the balance to do Vinyasa so I practice Adaptive and Yin and Restorative yoga with lots of props. I highly recommend those yoga practices for any of us with PN or arthritis or generalized chronic pain to calm our minds and bodies.
I’m happy to send more information about those to anyone who’s interested. Peace. Margot

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@margottaylor

Thanks @steeldove for walking people through Legs Up the Wall. It’s my “go to” whenever I’m tired or my body is cranky. I’m a regular yogi but no longer have the balance to do Vinyasa so I practice Adaptive and Yin and Restorative yoga with lots of props. I highly recommend those yoga practices for any of us with PN or arthritis or generalized chronic pain to calm our minds and bodies.
I’m happy to send more information about those to anyone who’s interested. Peace. Margot

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@margottaylor I am very interested in trying yoga. I have been to two classes, not recently and not around the same time. The first was hatha I think (lots of standing on one foot), and the second was yin which I found too slow-moving. I belong to a health club where yoga is included and you can basically just show up. They have many varieties - the ones I mentioned plus vinyasa, power yoga, yoga core, integral, and Prana breath, none of which I know anything about. I am not good at starting new things so I’ve held back so far.
Any suggestions or advice about these different types would be appreciated. They also have barre but I don’t know if that falls under the yoga umbrella.
Thanks.
JK

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