NeuroTalk Support Groups - Exercise: Pros & Cons

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- - Exercise: Pros & Cons (https://www.neurotalk.org/peripheral-neuropathy/192742-exercise-pros-cons.html)

Quote:

Originally Posted by Susanne C. (Post 1014331)

I am not sure it is hope.

Well, I had originally written a couple of paragraphs about the "some people" you mentioned being in one of the first three phases of Kübler-Ross (denial, anger, bargaining) and holding out hope, while you may (without assuming) have reached "acceptance". If you no longer hold out any hope, I would think you must have at one time, and would remember/understand those folks reasons/motivations.

That's what I get for trying to tackle the rhetorical/philosophical angles; I'm danged if I do and danged if I don't. :o

Doc

Quote:

Originally Posted by Dr. Smith (Post 1014355)

Never feel like it is you if I come off as confusing. I am confusing. I am on the autism spectrum so have an excuse. When I was younger I was just anti-social.
My emotional state is in a box a couple of rooms away from wherever I am so we aren't really on speaking terms. I have deleted a lot of posts after spending ages writing them because they were just...awkward? Offensive? Idiosyncratic?

A really bad childhood prepared me to always expect the worst. It has advantages and disadvantages.

Quote:

Originally Posted by Susanne C. (Post 1014331)

I am not sure it is hope. I follow this forum because there is hope for many PNers, but there really isn't for CMT. The posts are interesting, the regulars, yourself included, are very well informed and dedicated, and sometimes I can contribute something that may help someone else or just share a "me too" experience. It is a great forum.

Information about CMT from other sources on the web is either repetitive or erroneous- the old belief that it doesn't cause pain keeps popping up from cites that just paste that darn Mayo page- so SFN is really painful, unless it is caused by CMT, then it isn't? And having your muscles twist and wither couldn't possibly cause pain? The percentage of people who end up in a wheelchair is skewed too, unless I know of a disproportionate number of them, perhaps the others are too busy skiing and cycling to write about it. The idea that treatment is around the corner seems strongly rooted in the talisman-like properties of stem cells, which I am not entirely comfortable with ethically. I also think that corner may be the same one Hoover mentioned.

I do what I do- exercise, watch my weight, take fish oil and B-12, castigate myself for my frequent failures to do all of the above, in case it slows things down, but I am not sure that qualifies as hope. I do not like being a burden on the family. I firmly believe in the relationship of pain management to quality of life, though, so maybe that relates to your comments as in "I hope I can get off the sofa today."

I think of myself as a cynical, ruthlessly logical and realistic person. Hope has always hovered beyond my grasp. Now my husband? He is always hopeful. Sometimes it makes me want to kill him, but it does balance things out.

Susanne,

It takes courage to accept one's fate, especially if this includes a future potentially pain- filled days. You are a brave woman.

Mary

Susanne,

I know it can be so discouaging! I am not gonna tell you not to have those days or feelings because we ALL deal with them. Sometimes I will just get exhausted at the thought that I will be dealing with this for the rest of my life, I am only 45. When I start to focus on "the rest of my life" it does not take long before I am in a deep dark pit of self destruction.

I encourage you the same way I encourage myself: one day at a time. And it it's a really bad day, then one hour at a time. I rejoice in the hours and days that are good because being positive does help in so many ways.

There really IS hope. I find my hope in different ways every single day and some days are harder than others but without hope is despair. For me, my faith gets me through the darkest hours. I truly believe if God brought me to it He will bring me through it.

:hug:

UPDATE:

As to the exercise, well, I believe more than ever now that exercise and blood flow have a DIRECT impact on my PN.

I had stopped exercising since my PN was getting worse and worse. It was horrid, the burning flares all night.

Then I decided 2 weeks ago to pull out my chi machine and start using it twice daily, I kept thinking blood flow would help.

Help it did. In the middle of a flare when I use it, the flare ends within 30 minutes. Result of using my chi I was feeling better so this week I started walking 2 miles again.

Life it soooo much better. Sleeping through the night. I still believe hormones also impact my PN, getting worse right before my period then better once I start.

For me, exercise and my chi machine have moved up in rank even over supplements.

So glad for you, Stacy! Wow--two miles. (On treadmill again, or ground? Either way it's impressive.) Thanks for the encouragement for the rest of us trying to maintain or regain an exercise routine.

Yes, treadmill. I can't go outside, too hot.

I notice when I stretch my toes, point then flex, there is a distinct line of color, almost where I can see the blood flow problem areas, while normal flow areas are white the problem areas red then when I stop flexing its all white, lol.

I was unable to bend my big toes and the toe next to it on both feet, it would stay straight while the other toes curl/bend. I notice the more blood flow/exercise the better I can bend it.

It is strange how the worse I felt the less I exercised, which is now apparent why the less I exercised the worse I kept getting.

My nights are 95% better now.