Once labeled with fibro

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Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
I look back over old post (OLD) and I've noticed many regulars drifted away. So I wounder, did they recover? misdiagnosed to begin with? Or just loose interest? I wish some would pop back in and give an update.

I have shared this thought with another member and my own "dictor" had sent me back to my reumotolgist twice now when I've asked to be checked to rule out something!

How many of us have something else that just hadn't been detected but since we are now labeled as fibromyalgia they won't be looking for anything else. And even worse, they right our symptoms of to fibro rather then checking us.


***we thought my 19 year old had fibro, he has all the symptoms, to everyone's shock (including the reumy) he has psoriatic arthritis. Very rare at his age and had he not been in a flair up the day of his apt. He would have been labeled as fibromyalgia and probobly gone years before it was caught. This has really got me thinking now.
 
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I have wondered the same....made some good forum friends and then they disappear. I know for sure two had just been told they had lupus as well as fibromyalgia ...but maybe it's more likely they had undiagnosed lupus all along.

I think some people come here in desperation and support during the worst times or when newly diagnosed and then come to terms with the illness and build a new life not needing to regularly mix with other sufferers and perhaps even preferring not to read about everyone's ailments when perhaps they are coping pretty well.

So sorry about your son. Gosh that's another thing to cope with as a family. I am going to go have a read about psoriatic arthritis..have you been tested for this yourself?

Best Wishes Eyesup x
 
I've talked to my dr offen about this. He always tells me that what I present him with is fibro.he explained that if I was to present him with other problems he would no if I t wasn't fibro. he is a dr I'm not.and that has given me comfort.
Like I'm having probs with my heart and lungs atm .and it's not down to fibro,and the dr told me so if u trust your dr all should be good.but that's a big if.
 
I don't trust doctors particularly at all....some act and think they are gods but they only go by what they are presented with and dependent on experience training commitment to their profession and sometimes instinct make as good a diagnosis as they are able.

I have been treated for uti infections and gum infections in the past chlondrium patella of the knee a frozen shoulder and more all of which turned out to be false...i had interstitial cystitis....burning mouth syndrome and a this chronic pain disorder that started in specific places.

Years before fibro my GP thought I had ME/Chronic Fatigue but a very unpleasant highly qualified hospital consultant belittled my condition and said he got very tired too after a days work! and basically told me to get on with it. I had no pain but would find it so hard to sit at my desk at work and even went home in my lunch break and got into bed all dressed up in my suit for twenty five minutes rest!

Perhaps if i'd been believed back then and diagnosed i would have got the validation and support from both the medical profession and family and may not have gone on to develop severe pain of fibromyalgia .

HaHa rant over ...so if you have a good doc thats great but they like all professionals vary.
 
Forgetmenot your are indeed lucky to have a dr. You can trust. Like Willow I have not been so lucky. More often then not. And after being diagnosed it is as if any symptom I present to my pcp he tells me to talk to my reumotolgist.

I'm sorry to hear that former active members actually had lupus. I truely was hoping that they slowly recovered. I know the better I feel the more I do and the less I'm on line.

Does misery love company? I know I originally joined so I could keep researching through posts. But forum is about support so I can see only coming when ones desperate. Hit and run is what I call it when they as a question then never return for the answers! Lol that would be the ADHD me.

Thanks for the concern for my son Willow. It is life long also but is better understood and better treated then fibro so it's kinda a relief. I would prefer neither but this I believe is the least of the two evils and I'm greatful it was caught now.
 
I think it is probably very true too that people feel better or at least adjust to having fibro and fill their time with positive things that make them feel better .....less afraid...less need to search for answers.....they fall away.

I have noticed you are on here a bit less Eyesup but if that means you are feeling better and able to do more then that's a good thing for you.

I did have a quick read about your sons type of arthritis and saw it is pretty treatable especially if caught early and stops it progressing which as you say is the better of two evils...i wish him contentment in his life with meds to help to control pain.
 
I'm sorry your son has an illness, Eyesup, but I am glad it is something treatable. He has a good role model in you
 
For me it's not important the label, the most important is how we feel!
 
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