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I am at the end of my rope. In an act of desperation I am emailing my story to every doctor I can find. Someone, somewhere, has to be able and willing to help me.

LadyAlyxandrea 8 Mar 23
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I wish I knew any doctors. Hoping for the best.

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You would think so? ((((Alyxandrea)))))

But my niece's wife. Gees - the help she finally found was a Dr willing to prescribe Ultram.

It makes me nuts.

My pain specialist took me off oxy and put my on Oxy/Ibuprofen

And said to just take more ibuprofen if that doesn't work.

And told me that they'll have to stop prescribing me pain meds at some point.

This fucking war on opioids is going to kill me.

My mom is probably going to be tapered off next, and that really will kill her

@LadyAlyxandrea They took me off Opioids a year and 3 months ago. My life has gone downhill. I'm considering talking to my pain clinic (who right now only deals with my Botox injections for migraine) about resuming. I barely get anything done anymore.

Tried a nerve block and I'm never having that done again if I'm conscious.
Though I have a friend with a disintegrating spine who gets her nerves burned every three months or so. (It horrifies me). But she's way more active then I am. She also doesn't have to cook for herself as her parents left her money. (sigh).

Granted there is the whole "Pain feedback loop" they've discovered. And that is also problematic. (from Opioids).

Does you Mom also have EDS?

I thinking hunting down people with actual pain and taking opioids away from them is the cruelest thing I can think of.

IBU - laughing hysterically. And that's how I got my first ulcer. Gees.....

It's really a weird world out there. Where people with actually intractable pain can't get adequate treatment.

@RavenCT it's possible my mom has eds. I have had my nerves burned but it failed and only increased my pain and problems. They think it's because my nerves sit lower or higher in the root. I'm going to die if they make me go off meds

@LadyAlyxandrea I think you may need to point that out to them? I just don't understand what "skills" people can use to cope with intractable pain?

Distraction seems to be my major coping tool. And I'm tired of using it.

@RavenCT oh you can't tell them you'll die unless you want to be manditorally held with a psych until they deem you aren't a danger to yourself.

Because if there's one thing that will definately help it's stupid therapy

@LadyAlyxandrea You can however say "What would be the quality of my life then?". It helps to shift it back to be their decision being a bad one.

@RavenCT ah redirecting. That's a good idea. Thank you!

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