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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Debbie | @dbeshears1 | Mar 21 10:34am
In reply to @ray666 "Hi, Debbie. I read all these posts about the benefits of swimming for those of us..." + (show)
@ray666

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

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Ray -
Maybe I should clarify that I do NOT swim now. I used to be able to get myself around, but today, with my PN, I cannot cup my hands to keep my head above the water enough to swim. I do humor myself and try to doggie paddle.

What I do in the pool is exercise. You know, all the things are easier on your joints and you get the benefit of water resistance. My PT had given me a lot of exercises to do in the water. But swim? I can’t propel myself 5 feet with these arms and legs 😜

REPLY
julbpat | @julbpat | Mar 21 10:59am
In reply to @ray666 "Hi, Debbie. I read all these posts about the benefits of swimming for those of us..." + (show)
@ray666

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

Jump to this post

I used to do laps every time, but while recovering from carpal tunnel surgery recently, I started doing water calisthenics. I put the floatation belt on (there are bins full of these things for the aerobics classes) and grab some foam dumbbells. Then I jog in place, do jumping jacks, kicks, abdominal crunches - all this without submerging my shoulders and head. Then I do my laps, but I suspect there are a lot of non-swimming adults at the pool doing exercises like this. Then the delight of the whirlpool afterwards!

REPLY
mikem75 | @mikem75 | Mar 21 12:56pm
In reply to @sallymagint "Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy..." + (show)
@sallymagint

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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John 2nd time
Initial blood test mean corpusclar hemoglobin up .4 Dr. Called me.they said other labs will come tommow.question: is this common with P N. ??

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 21 3:03pm
In reply to @mikem75 "John 2nd time Initial blood test mean corpusclar hemoglobin up .4 Dr. Called me.they said other..." + (show)
@mikem75

John 2nd time
Initial blood test mean corpusclar hemoglobin up .4 Dr. Called me.they said other labs will come tommow.question: is this common with P N. ??

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@mikem75, Not sure I can really answer the question if it's common or not with PN. I have had low numbers and developed iron deficiency anemia when I was giving blood to the American Red Cross too frequently. I ended up having to go to the hospital for iron infusions for several weeks until my numbers came back up.

I'm guessing you may have already seen an explanation of the numbers, if not this may help:
--- What Is MCH and What Do High and Low Values Mean?: https://www.healthline.com/health/mch

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joanne64asis | @joanne64asis | Mar 21 5:31pm

I have the (insert scream, cry , moan and fall to the ground) kind of pain after I walk on my feet for about ten minutes. Apparently I have both arthritis and PN with plantar fascitis and well, just throw in the kitchen sink. As a result, although I used to hike and walk my dogs and garden and enjoy life I am now a recliner cowgirl with life measured in five minute dashes to the kitchen or bathroom. I was lucky yesterday since I got extremely fed up with my lot in life and stopped by an urgent care and threw a hissy fit over the lack of care my two podiatrists, four neurologists and current gp have given me and was seen by an extremely competent and caring urgent care doc who changed up a bunch of meds and suggested some vitamins and took the time to explain the nerves and what is happening and why I need to exercise my legs although with non-weight bearing exercise until the nerves get a chance to regenerate a little bit! I am happier with my urgent care doc than the previous six specialists combined.

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Leonard | @jakedduck1 | Mar 21 9:05pm
In reply to @ray666 "Hi, Debbie. I read all these posts about the benefits of swimming for those of us..." + (show)
@ray666

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

Jump to this post

@ray666
It's never to late Ray.
I used to swim 5 miles a day. After swimming I'd drive across the street for an ice cream bar and maybe a candy bar. Everyone made fun I drove such a short distance. I told them “you swim 350 laps and see if you want to walk.”
I had to stop swimming after my shoulder surgeries.
after I finished my laps, I used to sink down 12 feet and lay on my back on the bottom of the pool until one day a lady screamed, thinking I was drowning. Good times.
Jake

REPLY
1 reply
leelou03 | @leelou03 | Mar 22 12:54am
In reply to @daj3333 "Try low dose Naltrexone. It has helped me." + (show)
@daj3333

Try low dose Naltrexone. It has helped me.

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Thank you. I will try it

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efgh1020 | @efgh1020 | Mar 22 8:59am
In reply to @julbpat "Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve..." + (show)
@julbpat

Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve wondered what would happen if I got it stuck around my face and called out for help! Or maybe scissors ??? Yes, I know I can wear something looser, not even a real swimsuit. But I still have enough pride to want to look as normal as possible. I wear a two piece with a swim skort. Even that is painful when my hands hurt like this.
I belong to a wellness center with an indoor pool, so can swim twice a week year-round. I honestly can’t handle the whole experience (spandex, lane-sharing, chilly locker room, spartan shower) more than that. And that’s okay.

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There are maillot one-piece swimsuits from Swim and Sweat with front zippers. I have feet leg and hand neuropathy, and this makes getting in and out of my bathing suit easier. So glad for your access to a pool. I look forward to my weekly Aquatherapy, and plan to return to my aquacize class more often.

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1 reply
Ray Kemble | @ray666 | Mar 22 9:56am
In reply to @jakedduck1 "@ray666 It's never to late Ray. I used to swim 5 miles a day. After swimming..." + (show)
@jakedduck1

@ray666
It's never to late Ray.
I used to swim 5 miles a day. After swimming I'd drive across the street for an ice cream bar and maybe a candy bar. Everyone made fun I drove such a short distance. I told them “you swim 350 laps and see if you want to walk.”
I had to stop swimming after my shoulder surgeries.
after I finished my laps, I used to sink down 12 feet and lay on my back on the bottom of the pool until one day a lady screamed, thinking I was drowning. Good times.
Jake

Jump to this post

Hi, Leonard
I agree: It's never too late to learn something new, even how, at 79, to enjoy oneself in the water (other than in the shower, I mean, of course 🙂 ). Suggested by a good friend some months ago, I did bring up the possibility of aquatic PT when I met with my doctor, and he (surprisingly, perhaps) endorsed the idea but asked that I give top priority to dryland (!?!) strength-based PT of the sort I'd already been doing.
Ray

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