Part of my story

[leteeters]

This link tells part of my story.

www.dailystrength.org/c/Chronic_Pain/forum/11672664-tubular-aggregate-myopathy-just-dxd

I'm not sure how to get a link to work here. You can just google Tubular Aggregate Myopathy. The story shows up on www.dailystrength.org

I hope this board starts getting some more activity it has been a few years since some folks have posted. Hope to here from you guys thanks ET.

[Craig Lane]

Hi Leteeters,
The link works just fine, thanx for adding that. It is interesting that some people who have not experienced anything have judgment calls on everything. I do agree that pain is subjective and what is agony for one is irritating for another. We are all made different and are driven differently. What I think is the issue is that whenever we become aware of this condition is when we are reaching our tolerances (otherwise why would we seek help from the Doctors?)
It is undoubtedly a chronically degenerative condition and the best we can do is limit the impact on our lives. Each one of us knows how far they can push themselves and I don't doubt we all try to exceed this at every opportunity,usually to be reprimanded with additional pains for our trouble.
I would encourage everyone to steer their Doctor towards this site if only to show them you are not imagining it and you are not alone. Rare it maybe but, let just one person of "import" be diagnosed and the world will know about it.
Carry on reporting any little piece of information you find. I was told I was the only person in Europe with this condition. Here we proved that wrong. Maybe we are not as rare as they thought, just a nuisance as we are not in the easy to fix box.

[leteeters]

Great to see the link works thanks for looking at it.