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Amplified Musculoskeletal Pain Syndrom or A.M.P.S. PLEASE HELP ME

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Chronic Pain
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Posted 12/8/2014 5:53 AM (GMT 0)
I am 19 years old and I was diagnosed with AMPS at the Mayo Clinic a year ago. I am a female and started my first year in college this year. The pain I have everyday makes me want to stop everything. No I am not suicidal I am quite strong actually. It is just that the pain is so horrific that in the moments you can't breath, think, or make a sound. AMPS has cause me to faint, have a stroke and lose control of my body at times. All throughout high school I was a dancer, singer, violinist, gymnast, cheerleader, and actress. Now I still dance but it is to painful to do any of the others. Mayo didn't really know about AMPS. I am down to my whits ends with trying to get help for my body. If anyone has AMPS, knows anything about AMPS, please, I beg you, comment.
Posted 12/8/2014 6:50 AM (GMT 0)
Sarah, I am so sorry that you are having to deal with this situation. it does not seem fair that someone as young as you should be enduring such pain. I had never heard of this before but a quick search provided some basic info.

Amplified Musculoskeletal Pain or Reflex Neurovascular Dystrophy (RND)
Info looks like there were studies at children's hospital in Seattle which are described in Journal of rheumatology.
Also, the children's hospital in Philadelphia has a program.
I might call either/both hospital and see what they suggest.
RSDS.org has some good info as well.

This forum is a pretty cool place. There are a lot of good folks and the archives also have tons of info. You just use the search bar at the top of the page. Shout out anytime. there is almost always someone lurking about.
Good luck.
Posted 12/8/2014 12:15 PM (GMT 0)
Hi, Sara - welcome to the forum. I don't know how to solve your problem, but I'm glad you found this forum, at least for support.

It must be tough since your condition is rare, but perhaps you could find a forum that is specifically geared toward people with the condition you have?

It sounds terrible, I'm so sorry your life has been so altered at such a young age. I hope your pain is managed to the point where you aren't in horrible suffering all the time. It's sad that that's all we can hope for as people with chronic pain.
Posted 12/8/2014 2:51 PM (GMT 0)
Hello Sarah & welcome to the forum. No one wants to deal with chronic pain especially when we see young people like yourself dealing with it. I am glad that you are continuing to dance. At least by having that to do it keeps you active which is very important for someone with chronic pain.

Daesin has given you a couple of places to check out so please either get online with these places or call them to see what they can suggest.

Let us know what you find out. Take care.
Posted 12/9/2014 5:57 AM (GMT 0)
Hi Sarah...I'd never heard of AMPS - but googling it seems to fall into the same box as CRPS/RSD - which I've been dealing with since I was 14 (I'll be 30 in a few weeks). So perhaps as Daesin suggested, contact an organisation such as RSDS - I think they have a list of doctors (assuming you're in the US? I'm not, so can't be much use there, though if you want to email me you're most welcome to).

Am sorry you're dealing with this pain
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