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TyRoni
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/21/2011 9:00 PM (GMT -6)   
This is my first time posting and I hope to get some feedback.

It's been over 4 years now that I have gone w/o a proper diagnosis. I have widespread pain in my muscles/joints that the doctors just can't get a hold of. I'm only 22 years old now and have been in pain everyday since I was 18.

In the past four weeks alone I have visited the emergency 6 times due to the pain being too intense... or me having rectal bleeding... or vomiting... or passing out. But every time I've been sent home after hours of waiting w/ "normal" lab results.

It seems that everything could possibly go wrong, short of dying (which doesn't even sound as badly as it used to anymore) has! I'm dirt broke. I have no degree. I've been forced to drop out of college 3 times. If I start crying I don't know how to stop. I've completely given up any dream I've ever had relating to the future... I'm spent!

There's got to be an answer as to why I'm in a condition worse off than that of a 79 yr old in need of a new hip, in the prime of my life! But every test has come back negative/normal. I'm on my 3rd or 4th (I can't remember) set of specialist and being completely rejected, sight unseen, by the supposed "best in their field."

If one ache leaves, another one follows. If my nausea subsides, my bleeding starts back up. If my pain is at it's minimum (which isn't often) I'm being hassled by debt collectors... all b/c my health insurance or lack there of sucks! I'm literally at the end of my rope & I fear rather than being saved or finally falling, I'll just dangle here w/ no hope.

At this point if it's not one thing, than it's another and I can't stomach that fact any longer! I need help! I want help... I need advice!!!!!

I've also set up a blog for ppl like me & just for those in the same situation that could use a laugh of relatability: confessionsofthechronicallyfrustrated.blogspot.com

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9252
   Posted 6/21/2011 11:34 PM (GMT -6)   
Hi TY and welcome to the Chronic Pain forum. This is a great family of people you've joined here and we will do everything we can to help you regain your life.

The first thing that came to mind is fibromyalgia or one of the similar disorders. Basically it's muscle pain with no known cause. The pain can be intense or slight of vary between the two. The diagnosis is often made by a rheumatologist but a good PCP can give you a yes or no too.

When you find yourself not getting anywhere with the medical people you've seen the next suggestion is to head to the top! Find the closest university/teaching hospital to you and get there ASAP. These folks have clinics to treat people like you and me. They can handle issues of money or lack of it. And best of all...when the going gets tough they won't send you away without an answer. This is where the research is done and they won't give up. Sometimes you can get in on a research study or maybe a medicinal trial...who knows. But if I were in your position I'd give the closest one a call...even if it's a very long drive.

How do you find these??? At the top of the page is the topic Chronic Pain 101. In there is a link to a worldwide list of university/teaching hospital and clinics. It doesn't have every single one but enough for you to likely find one. Here's the link so you don't have to search right now.

en.wikipedia.org/wiki/List_of_university_hospitals

And since you listed the state where you live on your profile, here are two teaching hospitals
in Maryland. These are top notch centers! I hope something here can help you!

Chutz
~~~~~~~~

University of Maryland Medical Center, Baltimore
en.wikipedia.org/wiki/University_of_Maryland_Medical_Center

Johns Hopkins Hospital, Baltimore
en.wikipedia.org/wiki/Johns_Hopkins_Hospital
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/21/2011 11:58 PM (GMT -6)   
Hi Ty,
 
...and welcome here.... but I'm sorry you are dealing w/ so much.  You sound so overwhelmed...  Not having a diagnosis is more than frustrating - many of us here have walked in those same shoes. 
 
Chutz gave you some great ideas... and I agree w/ her that it sounds like maybe you have fibro or something like that. 

You mention your trips to the ER - but have you seen a PCP?  Any specialists?
 
Are you on any medications give you any relief? 
 
Anyway, this is a wonderful, supportive group of people... so feel free to vent or ask any questions.  I wish you every success in figuring things out.
 
--Tina 

TyRoni
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/22/2011 8:22 AM (GMT -6)   
Thank you so much Chutz & Tina for the warm welcome! I'm very excited to be here & gain some encouragement & understanding from ppl going through similar situations.

I have beenn diagnosed w/ fibromyalgia & then told I was misdiagnosed then diagnosed again but b/c of my growing symptoms & me not responding to the medications for I, they're saying there's clearly more to the story.

I have reached out to the. Universities & higher up facilities that you've mentioned however they've refused to see me after years of begging. First they told me that they do not treat ppl w/ this diagnosis despite my PCP sending multiple letters & making many a phone call explaining that they don't believe that I have the disorder or that it's the only thing wrong w/ me. & as far as my insurance goes, it only covers my PCP, generic medications, & some ER visits. And I've been told by law I cannot be charged out of pocket w/ the "coverage" I have. I can't afford to keep my insurance but I cannot afford to lose it either.

I'm now on my 4th PCP & that's within the last year alone. If it isn't a problem w/ health coverage it's this huge scarlet letter of fibromyalgia pretty much blacklisting me. The whole situation is out of hand & I just want the proper answers & treatment so that I could get some form of my life back.
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