I'd rather have any other condition.......

Indigobluejay

Member
Joined
Jan 8, 2020
Messages
14
Reason
DX FIBRO
Diagnosis
01/2016
Country
US
State
CA
It strikes me - while reading the forums - that none of us, including the medical establishment, really know what is going on with our bodies and our minds regarding this disorder. All of us have different experiences with fibro and chronic fatigue and different strategies work for helping us feel better... There doesn't seem to be one correct answer for how to address the pain, or fatigue or painful pressure points, etc.. But with other conditions, like heart disease, there are tried and true ways of treating it and curing it. It feels like we are desperately flailing around. I feel anger with the medical establishment for just throwing drugs at our symptoms and telling us to go on our way.....For a comparison, if feels like my child had been abducted and all the police department will do is post fliers saying, "missing child" and tell me, "its going to be OK." when they really don't know. I also feel frustration, despair and uneasiness. This condition, disease - whatever the heck it is, sucks!
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
335
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
While I understand your frustration, a minimum amount of research on medical conditions will show you that there are many you could have that would be worse.
 

Mirador

New member
Joined
Nov 27, 2019
Messages
2
Reason
DX FIBRO
Diagnosis
01/2017
Country
US
State
MI
It's not fun to have FM, with its unpredictability, aggravation, and relative lack of treatment.

I have a niece who doesn't have FM, but who was diagnosed with multiple sclerosis at the age of 21. There were several medications available to treat MS, and her neurologist tried her on several of them until finally trying a newly developed medication, which is administered by IV.

After several infusions, her MS went into remission. That was over 20 years ago, and to this day, her symptoms of MS have not returned.

However, just a few years after her MS stopped being an issue, she once again began to feel unwell - though not the way she had with MS. Her doctor determined that she had developed cardiomyopathy and heart failure. She became gravely ill by the time she was in her mid-30s. She endured several mechanical devices being implanted to assist her failing heart, and ultimately, by the age of 40, she had to have a heart transplant to save her life.

And what had caused this rapid, unexpected damage to her heart once her MS was in remission? It was the IV medication she'd received - the one that eliminated her MS. Turns out that an uncommon side effect is heart damage - and she turned out to be one of the unlucky ones. So by the age of 40, she traded away MS at the cost of a previously healthy heart.

She and I have never discussed it, and we never would, but there's no question that both she and I would have preferred that she were with me in the FM boat rather than being in the boat she ended up in.

Everything is relative. There are SO many worse things we could have than fibromyalgia.
 
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