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Old 10-13-2017, 12:36 AM #62 (permalink)
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diamond diamond is offline
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Join Date: 2015
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Country: UK
Diagnosed: 01/2008
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,536
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Default Re: Exercise intolerance , how real is it?

I think you and i have ME/CFS too Tipnatee that's why we are different. Its impossible to understand unless you have it that tiny amount of exercise makes us worse indefinitely...not the usual recovery period of a day or 2.

Sadly that also means our muscles do weaken over time on top but that's not our fault for not trying because we have caused a flare and then caused a temporary set back from over doing its because so little is overdoing it.

I didn't have the CFS part to this degree at the start of my fibro journey so i know the difference. I could walk for an hour and just hurt ..this is a whole different thing.

Exercise intolerance is a real and debilitating situation to be in......zero or very few spoons like you say.....spoons that if you have them are used having a shower and then you don't have the strength to get dressed and can only lay down and try to recover from the exertion....or reading or using a laptop is exhausting then you need to rest in silence to recover...with the pain building too as a consequence.

Your mouth muscles tire talking and you loose your voice after a few sentences and struggle to eat sometimes because your muscles barely have strength to chew or swallow.

The more you push the worse it gets both loss of strength and pain until the jaw starts to seize up.

My fingers and wrists are constantly exercised from typing and general things like making meals and drinks but they don't get stronger and more able to tolerate the things i do they just get more painful and stiff as the months and now years go by.

This is the best example i can think of to show we don't give up or stop using our bodies then they become exercise intolerant as a result..although long term its bad for the muscles true strength the way most people understand it including doctors and even myself.....we are intolerant because we don't have the ability because of an illness that takes away the muscles own tolerance to be used and cant for some reason be fixed or tolerance built up more and more by exercising and use...yet at the same time we have to keep trying or we become more and more disabled..muscles atrophy and bone density is lost...so a very scary place to fight from.

Yet we must fight somehow but with a bleak future which affects your mental health too with repeat failures to improve the situation.

I also feel somehow its my fault...when did this illness switch up gears ...should i have fought harder and pushed harder..then i look back and know i did ...i didn't choose to suddenly become exercise intolerant it just happened somehow.

I didn't suddenly get more afraid of pain id been living with for years or stop knowing how to pace myself between enough exercise and too much...everything i did suddenly switched to too much and i could barely get to the bathroom and back to the bed.

My heart races too Tipnatee with movement.

Im not sure if anyone else can identify with this...or feel their illness progress or change long term rather than a flare.

Last edited by diamond : 10-13-2017 at 12:53 AM
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Tipnatee N (10-13-2017)