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Old 03-04-2008, 04:43 PM
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Join Date: May 2007
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15 yr Member
cyclelops cyclelops is offline
Magnate
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Join Date: May 2007
Posts: 2,049
15 yr Member
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I exercise, and actually did competitive (recreational) athletics with PN, altho I had no idea that the pain and other symtpoms I was feeling, were indeed PN.

In general, I totally agree with Dakota, and she knows of what she speaks.

I have a few additional problems that most people do not think of when they think PN. I have global anhidrosis---do not sweat to heat. So I have to make extra efforts to cool myself. I have hypotension and bradycardia, so I have to take care to keep my BP up, and know when to fold, and lie down. Exercises against gravity, such as hiking and running stress my autonomic system terribly and my BP and P decrease the longer I am upright, until they all together dump on me. I do have meds to raise my BP, and I can use compression clothing....provided it isn't too hot.

Other issue, it with sensory neuropathy, make sure you are confident of where your body postion is. Proprioception can be greatly off with PN...using a mirror to make sure you can see your body will help. When outside, not much you can do.

Pool exercise is always great. I learned to swim very well, the worse my PN got, the better of a swimmer I became....because I do not fight gravity, don't traumatize my bones and joints, and don't have to worry about balance or a fall. You can even run in water. I do.

That said, I still bike, still try to lift weights (very hard on me--but I have myopathy too) I swim and I walk....just saw an orthotist today and got spine, AFOs and shoe orthotics to see if we can get me to be able to jog, just a little. I look like the bionic woman. (Actually, what I got is fairly innoccuous and mostly carbon fiber---we shall see how it goes??!!)

I had to promise to do just a little....just to give myself the 'feel' of it. I will never be a runner again--too much nerve and bone damage and risk. Running on already damaged nerves is not advisable. But I can maybe run a few steps and walk a few steps?? Maybe? Depends on how numb I am, or how bad the spine and tibias hurt.

I have a bit of a risk taking personality, so, for me to not feel too depressed, I have to do these things. Plus they increase my endogenous opoids tremendously, and I am sooo much less depressed.

I won't be able to keep up this level for too much longer, and I know it, but I will make hay while the sun shines. My spine isnt going to take too much trama, as it is hard to stay upright for more than an hour without feet going numb and back hurting so bad I have to lay down.

It may seem oxymoronic, that I still do the sports, but they are entangled so much in my self image and who I am, that I don't see I have much option. I am in the position where, I can do this, not every one is. I have more foot numbness... I do not have the burning pain, I have aching pain. That said, I often over do, and end up in the ER, with my famous puke-spasms, which are in themselves, exercise.

I am looking at other things like kayaking or canoeing. I can hike but not too far, no backpack. I can kite (no skis this time). I can snowshoe with orthotics or specialized snowshoes.

I always take a cell phone and hubby says, pretty soon, he will put a GPS beacon on me.

I have never been to a recreational competition where I haven't met folks with very huge physical challenges, amputees, people with aneurysms, blind people. I once met a one legged cyclist who was crossing the country on his bike on a ride to benefit the lung assoc...also a blind cyclist.

Consult a knowledgeable PT....some one who knows neuropathy and loves sports. You can have one that knows neuropathy and doesn't understand a person who loves athletics and you get a bunch of therabands and a few sheets of instructions. You can get one who loves athletics, and you get the go ahead to do things WAY too much for neuropathics......you need to find one who wants to work with people with neuropathy, who understands the many neuropathies that there are, and who respects and will help you live the way YOU want to LIVE! Then you need to be reasonable as to what you can safely do, listening to your body.
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