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Has anybody with PN felt like while walking down the street, you have lost your awareness of where your body is in space? 😒
Hi @lweave2 Can you be more specific? Do you mean your entire body? Or just the parts that are affected by your neuropathy?
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When I go walking at the park, I feel like I'm not grounded or achored to the ground, I have numbness in both legs & both arms & probably in feet, maybe thats why I feel like I'm weightless when I'm walking. An astronate feels weightless while floating in space. I feel weightless when I'm walking on the ground. Never felt like this before, but it started around the same time I started getting numbness in legs & arms (which was a couple of months ago) I feel like I'm losing control of my body. 👱♀️ Thanks for asking.
this is called proprioception — What is an example of proprioception?
For example, proprioception enables a person to close their eyes and touch their nose with their index finger. Other examples of proprioception include: Knowing whether feet are on soft grass or hard cement without looking (even while wearing shoes) Balancing on one leg. Google the word and you will learn more information.
I think I know what you mean but I thought it was caused by the gabapentin or the tramadol that I take for pain. I have noticed my pain level in my feet and hands has increased lately and at the same time I have this weird feeling that I am not quite in touch with my surroundings. Today I also have a slightly stiff neck and that might be making it worse. I received my monthly Evenity shot this morning – first time in several months, (I was on Alendronate for a while before restarting the Evenity. ) I don't have numbness as far as I'm aware – I experienced numbness in my feet earlier in the disease but not right now. What really disturbs me is the feeling that I am unaware, less alert than I should be and have always been in the past 76 years. I have not been driving for probably 4 or 5 months because of the medicines I take, but I had hopes I would eventually be able to drive again but I guess that is not going to happen.
Peripheral does not only apply to your surroundings.including vision, sounds, temperature and that vital sixth scent
This related discussion about proprioception may be of interest:
– What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
@lweave2 have you talked about this feeling with a neurologist or even a physiotherapist?
@lweave2 You described it so well! As neuropathy has moved upward in both legs up to my waist and both hands, both numbness and pain are causing those strange sensations in my body, and the sense of losing control of my body. I wish I could be more encouraging, but until research gets serious about discovering causes and real treatments for neuropathy, I'm afraid we're going to be "weightless"
Steeldove, Thanks for sharing your experience. I had physical therapy the other day and asked my PT if he had treated other patients that have a loss of wareness where they stand. He said many patients with PN come in the clinic feeling the same way. Its a very akward feeling that I'm trying to adjust to every day. The more I'm outside in a wider open space the more I get this feeling. When I'm working in a smaller closed space like in my kitchen or living room the less I feel this way. Keep Plugging on!
Hi. Rereading your post history, this started for you with Morton's Neuroma followed by surgery to remove the nerve causing that which then led to neuropathy, correct? You were prescribed baclofen as treatment. Did that help and are you still taking it? How is your pain level now? Best, Hank
@lweave2 I think that we're more comfortable in smaller spaces indoors because we know exactly what's underfoot. OutdoorsI always use a cane and I'm very careful to watch exactly where I'm placing my foot with each step. Do you find the strange sensations particularly strong when you move your legs off the bed and onto the floor? I do, and suspect it's because of the dramatic change from being horizontal to becoming vertical. I'm 82 (sliding towards 83!) and have Kempf digital hand controls on my car because I lost feeling in my feet and my legs, and twice this year I drove from Springfield, MO, to Mayo in MN.,
Hank, You are so nice to ask me about my current pain. I'm taking Pregabalin 50 mg in Am & Pm, Nortriptyline (pamelor) 50 mg in Am, Rx: Baclofen 5 mg – take 1/2 tablet 2X day as needed for pain, Most of my pain is coming from muscle stiffness in both legs & feet, From 9:00 am – 12:00 pm- Window of time when I go to park & walk, do PT exercises, go home and do stretches on a mat, from 12:00 pm -11:00pm my pain level starts to increase to a 8. My Neurologist Rx: Baclofen (muscle relaxer) but side effect is sedation. Hank, if you were me what would you do to decrease my pain level? You seem to have a lot of experience helping your wife manage her PN.- Thank you 👱♀️ interested in your feed back
Two days ago I posted for someone a list of the things my wife is doing in her life to deal with her pain, here is the link to that post:
Some of the things on her list are specific to her primary pain area which is her neuropathic burning feet. Physically it sounds like you are doing plenty, what a great sounding program of walking and PT related exercises. I am impressed.
Linda is allergic to many drugs. She does not tolerate others very well either. She's had some bad reactions to a few different things. So she just says no to drugs at this point. That said, some of the things on her supplement list might help you. Among these I would consider Theracurmin (from the company Integrated Therapeutics) for inflammation. Possibly Milk Thistle to help your liver deal with the toxicity of the drugs you are taking. Also are you taking magnesium (citrate, glycinate or malate)? Could be good for the stiffness. Linda is taking PEA (palmitoylethanolamide) as a possible help for the pain from her PN but she has not yet taken it long enough to know whether it will help her.
She (and I) also take several mitochondria boosting supplements (mitochondria are the source of all energy in the body). Not sure you're interested in those, just tossing it in here. Some of them do seem to boost energy (I can point you to a discussion if interested). Wish I had something more to suggest. Oh, one other thing she is doing is a cold laser light treatment on her feet. The laser, bought on Amazon, is uber expensive, but so far, after 2.5 weeks, she is noticing some changes happening in her feet, possibly for the good. We'll see. Maybe using it on the offending muscles in your legs could benefit you, who knows. If you are interested, here is the item on Amazon: https://smile.amazon.com/LaserTRX-Therapy-Premium-Technology-Combining/dp/B07RGFKBPK/ref=sr_1_1?dchild=1&keywords=laser+trx&sr=8-1
You can also find it discussed on Connect, just search for LaserTRX in the search window.
Hope some of this is helpful for you. Best, Hank
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