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1sweed

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Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
I got a magazine in the mail called Pain-Free Living, and it has a good article in it by a doctor Abraham Rivera, M.D., called Perplexed By Pain.
In the article he talks about how hard it is to find reasons for pain and it usually becomes a process of elimination being the only way doctors can diagnose medical conditions.

He also mentions how the healthcare system is not very user friendly when someone is trying to find out what is wrong as they keep getting moved from doctor to doctor through-out the different professions of medical conditions.

Example he uses is:

Imagine taking your car to a mechanic for a new engine rattle. The mechanic tells you, "I do not work on that brand of car. It could be the muffler." You then go to the muffler guy next door, who charges you a fee just to look at the car but ends up not being able to help. He tells you, "There's nothing wrong with your muffler. It could be the transmission. But that would cost $100."
Then the transmission guy can not find anything wrong so he sends you to another specialist. And on and on it goes. Six months later you just learn to live with that engine rattle.
***************************
We have all been down this road. Some are at the beginning, others in the middle of the cycle, and still others at the end who are just learning to live with their condition. Then we find a website that offers some hope in self-management of our health condition and some of that lingering fear goes away. We share the good, the bad, and the ugly, symptoms and problems, trying to find ways to ease them to a more comfortable and knowledge filled way of dealing with this fibro life.

I am thankful this forum and it's many old and new members who are finding coping skills and new friendships that allow us all to move forward in hopes of a cure of our condition sometime in the future.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Thanks for sharing. And I couldn't agree with you more.

The healthcare system is incredibly user-unfriendly. It took me many doctor/hospital/administration mistakes to learn that one must always and always be a smart patient. In fact, and thanks to fact that we have access to all kinds of information, I found suggesting diagnosis/tests, presenting cases to doctors seems to open their eyes, and look at the symptoms differently.

We were in the ER with my mom a month ago, my mom could not speak, she was shaking, screaming, and the doctors could not figure out what it was. They insisted it was a psychosis (only focusing on the fact that she has an anxiety disorder), but we were sure that it was not. Me and my sister were both on our smart phones, checking online what it could be, so we kept on asking them 'did they check this?', 'could it be this?' and sadly, our suggestions were like eye openers for the doctors there and they did further tests and finally figured out what it was (hypertension crisis). It was so so so frustrating to see how close-minded doctors can be. They heard mental illness and made their assumption there and would not look at the situation from different perspectives.

I mean this was the ER and it was a life or death situation. Imagine the situation with us. We go to the doctor with pain complaints. We can't tell them where it hurts, because it hurts everywhere. We tell them we are exhausted, with no apparent reason. They do all kinds of tests, they come back all fine and then they go down the 'mental illness', 'stress' road and send us away. And many of us have believed them, haven't we? Worst and the truth is that we have blamed ourselves, told ourselves to 'be strong, not be weak, push on through' etc. We felt lazy and weak......

I love the example of the broken car. It sounds so pathetic, but it is exactly the same with us as well. Pathetic. And this needs to change.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
Broken car . Yes indeed I am. Tear just flow out of my eyes reading this just thinking how far can I keep on going , my gas is leaking too but there's seem to be no distination that I could stop by and get a rest.

Sometime it also felt like a small boat with leaking hole and no roof . I'm going to drown if I stop scooping the water out , there's no way off that boat and I'm in the mid of the ocean. It's cold and wet at night , it's hot and burning during the day light sometime both at the same time. But I can't stop . I have to keep on fixing that leak. I have to keep on going but there's no permanent solution is there?

That's what I'm racking my brain every each day to find any solutions with such limited amount of materials and options. How long can keep on living? Till I sink maybe? Of couse I can't give up yet , there could be an island somewhere and I'm very close to it. It would be a waste to die now right? Or should I even keep on deluding my self?

Thank you 1sweed for posting this.
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Thank you for this post 1sweed....good analogy.

I'm also grateful to you and the others for helping me through each day. For anybody reading back over old posts they will find comfort in the fact that others share similar problems in the journey with fibromyalgia.
 
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