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Oouch

Feb 17, 2017 4:09 AM

Pain pain pain
Lots of pain making my life just so miserable. I have no energy nor the motivation to get out of bed let alone do anything. My every activity of daily living is affected, my appetite is rather unpredictable at the best of times, my social skills are almost nonexistent. I remember a time when I exuded confidence that was off the scale and I used to be loquacious and all but now even my girlfriend is complaining about the so called lack of communication. How can I listen or engage in conversation, dinner, sex or anything else for that matter when all my body is immersed in pain. I mean the only thing I am getting all the time regardless of the activity at hand is this excruciating red hot sensation. It's like I am engulfed in a massive ball of fire. I don't mean to depress or dampen anyone's mood or spirits here but if anyone shares at least some of these experiences then I would be glad if you nudge me. Obviously I could go on and on about the day to day monotonous events which have one thing in common : pain and lots of it.
What I dont get is how my body is not getting used to it. I always thought by now my nerves would be immune to the stimuli but I guess "no pain no gain" right?
Cjg

Feb 17, 2017 4:45 AM

What do the doctors say? Does heat help? Try soaking in warm water in tub with 1-2 cups Epsom salts. Supplements help some people. Vitamin D, vitamin B complex, magnesium.

Feb 17, 2017 5:18 AM

Doctors have carved, pricked,prodded medicated me among other things in trying to find out what it causing these symptoms. I have had blood tests, muscle biopsies, MRIs, lung function tests and more. From the biopsies they said I have " idiopathic necrotising myosotis" however after years of further tests including genetic studies now the culprit is a caveolin gent mutation causing muscle pain and dystrophy. The disc problems too. I do have some good days though where I pop the smarties (pills) and the raging tide subsides and I get on with it and even go to work.

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