Living with Neuropathy - Welcome to the group

JK... If you have good balance any of those yoga classes could work for you. It depends on your preference for a more athletic or more meditative practice. Yin can feel very slow if you want more movement because it is designed to work on the facia, the connective tissue in your body, rather than muscles and the postures are mainly stretches that you hold for 4-6 minutes while breathing deeply into the poses. Perhaps you'd like Vinyasa (again if you have good balance) or a Gentle Hatha or Vinyasa class. Barre is great for strength training and balance. Also pay attention to how you resonate with a particular teacher as that can influence how you like a particular class. Let me know if you have other questions and I'm happy to try and help. Margot

Thanks much @artscaping for the visual. Now I just need to be able to get on the floor and up again when finished !!! Thx again

Thanks, @margottaylor Now if I can just work up the confidence to be the newbie in a class I will go. I cannot stand for long on one foot, barely at all on right. All of the instructors at my club are very good about telling people to modify to meet their own abilities. I know nothing about Barre really and have presumed that it would be too much for me. I'm not in bad shape for my age, I go the gym at the club generally 3 days a week and do water aerobics another three days a week, but I am old (71) and went too many years being too sedentary and very overweight.
JK

Hi everyone. I a looking at the exercise above and have tears. I few years ago that would be no problem. Now I can hardly get up from a sitting position. I believe this is in part due to lack of activity for sure. I stopped going to my aqua fit pool exercise after told I needed lymphedema therapy. Lyphedema therapy is not done in the same place and I had to travel and they did not use water therapy. As I had said previously I was diagnosed a few months ago with lymphedema and then peripheral neuropathy. The vein doctor said I had lymphedema but never tested as to why as I did not have cancer. After I questioned he said I should have had tests I am having a CAT scan with contrast tomorrow. These last 8 months have been a nightmare mare. I could go back and say 16 months as that is when I lost my husband to stomach cancer. I knew I had neuropathy long before I had the nerve conduction test. Always had problems with my legs and some swelling in ankles. About 8 months ago my left foot, toes, ankle and leg started swelling and the pain is intense. No one can tel me why. I have been to two vein doctors and I do have venus insuffiency and neuropathy and now according to one lymphedema. I have referred to a orthopedic surgeon who asked why I was there. Yup. He did. Told him what doctor sent me.I do have osteoarthritis in my toes and foot and am told that shouldn't cause this much pain and neither of the diagnosis should cause this much swelling. One doctor said "I;m stumped" ANA blood test was positive with titer of 1:80 speckled which is on the border of autoimmune disease but neurologist kind of blew it off until I told her about rashes I have and she said I probably should see a rheumatoid doctor, a hemotologist and an infectiousness disease doctor but never gave me a referral. The one vein doctor is sending someone out with a pump for my leg to use at home. I was in lymphedema therapy for a month and they used one. The neurologist said someone should have been looking at this because it is only on one side. I must admit her questions and answers concerned me about cancer and she said the C word. That is how she said it. I have pushed myself in a dark corner and am finding it difficult to get out. The pain and swelling keeps me down alot so between being alone and losong mobility I am struggling. I have never had to rely on doctors or been to so many or been in this much pain for so long. I have been fortunate I agree. Right now though I am not seeing light in this tunnel. Thank you for reading this. I give you all so much praise and keep all in prayer.

Hi @summertime4, I know it can seem overwhelming sometimes but hopefully they will find something that helps with the lymphedema. I would keep asking questions and being your own best advocate. My lymphedema is primarily in my right leg and I wear compression socks which helps with the swelling during the daytime. At night when I take them off and am laying down it doesn't seem to swell since it's easier for the lymph fluids to be pumped up and out of the system from the feet/legs. I had thought about getting a pump for my leg to use at home when I'm working on my computer but the socks seem to be doing OK for now.

Can you can give us an update after your CAT scan and contrast? If I'm not mistaken the contrast part checks to see how the lymph fluids pass out of the body to see if there is any blockage.

I sure will I should have the results next week. Did they ever find a reason for your lymphedema diagnosis?

@summertime4 -- looking back on my medical notes from the doctor, my diagnosis is mild bilateral venous insufficiency with my right leg worse than the left. The Lymphoscintigraphy was negative for lymphedema so I have been mistaken about having lymphedema. The doctors report says bilateral lower extremity edema, worse on the right compared to the left. Not sure why I had it in my head that I have lymphedema. The doctor said -- "There is no notable pathology to explain his edema. When comparing the right to the left ventricular size, there does appear to be some enlargement of the right ventricle". So I guess in addition to idiopathic small fiber PN I also have idiopathic edema ☺

Hello Mat @mathewv -- Welcome to Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I also have small fiber peripheral neuropathy but don't have pain with it. I only have the numbness. I posted what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You may also be interested in the following discussions on Connect:

> Groups > Sleep Health > Restless Leg Syndrome
-- https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
-- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you found any treatment that gives you some relief?

Hey there. I have been diagnosed with small fiber peripheral neuropathy and benign fasciculation syndrome, a condition which causes my calf muscles to twitch constantly. I am also bothered intermittently by restless leg syndrome. According to my neurologist all three conditions are related. Ain't we got fun?

The main problem is the burning in my feet from the neuropathy which makes it difficult to sit for prolonged periods (notably at work) without shifting around, getting up to stretch or taking a walk. Because a blood test showed that I had elevated homocysteine levels, the neurologist put me on Metanx, a prescription vitamin b supplement which in theory would lower my homocysteine and solve my problem. Unfortunately, the medicine gave me heart palpitations and so I discontinued using it. A follow-up blood test showed the homocysteine back to normal levels and my primary care physician concluded that that was not the problem to begin with since the burning persisted, while my neurologist thought that it might have worked given more time.

I am now taking neurotin without any noticeable relief. This has been going on for about 2 years and it has really affected my quality of life. So I'm here to find out what the hell can be done to make me feel normal again. Is there anything that works against this infernal condition?

Thanks,

Mat

Hi John. I'm okay when I'm in motion. Exercise helps. I only seem to notice the symptoms when I'm at rest, particularly when I'm sitting. I don't feel pain either, just an aggravating burning sensation. It's worse at work sitting in front of a computer than when I'm stretched out in my recliner watching tv at home. It also tends to flare up when I'm particularly stressed out, which happens often since I've also been diagnosed with generalized anxiety disorder!

Meditation helps but it's no cure. Taking lots of Lyrica helps, as does Xanax, but obviously neither is the permanent, long-lasting solution I'm looking for. I'm at a loss. I really don't know what to do. That's why I'm here.

Mat