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a moment to vent
10 Replies
Auvonto - October 11

To me it seems ok to look up information on the internet. when i have someting bothering me i look it up to see if it is one of the many symptoms that are associated with FMS. but i am finding out that some Drs. dont like you to do that. they say its self diagnosis. this is my body noone knows my body like i do. i like to know everything that i can so that i can work with my dr in helping find some sort of relief from what i am going through. there have been several times that I caught a problem with the meds that were being given to me that they were not to be taken together. if i hadnt found out that those two meds were not compatable i wouldnt be here today. tell me what is wrong with me looking and trying to find out myself especially when there arent many drs that even believe us in the first place. i dont care who doesnt like it. i will keep on looking for myself because who cares more about me than me. whew thanks lol i feel better.


Fantod - October 11

I would pay no attention to a doctor who critizes you for being smart enough to check on symptom. In fact, I'd probably find someone new to work with me in a more collaborative manner.

Granted, not everything you read on the Internet is correct. And, for those of us prone to anxiety, it sometimes is not helpful to be given too much information.

But, as a Fibromyalgia (FMS) patient, the lack of knowledge by the medical profession means that you must be your own best adovcate for care. If your doctor is not receptive to having an open dialogue, go to the National Fibromyalgia Association website and find a list of fibro-friendly healthcare providers for your area. Doctors are not God, they put on their pants like the rest of us. If they are not smart enough to realize that they may not know everything perhaps it is time for a new career.

Take care.


Auvonto - October 11

thank you Fantod, i take everything i read and cross reference with other information that i have gotten. i love to research and feel that i am not hurting myself by trying to find out more information about this illness. thanks again


ladryna - October 12

I totally agree with looking up things on your own, as long as you completely research .. not a problem in my book! I definitely think that having a dr who welcomes all the information I can find to help her understand FMS has been a blessing! Good on you Auvonto!


axxie - October 12

Auvonto, pay no matter to doctors who tell you that, it's better for you to go on the web site and do your research. Doctor's don't want you to say I have this and I think it's this cause I researched it. They like to be in control, so go and say something like, I have this and this and what do you think could it be this, and leave it at that. That way the doctor's ego won't run wilde. As for the medication, always look on the web site and check with your pharmacist, before getting your prescription filled. Make sure, you know what you take, I always ask the doctor what are you prescribing and what does it do, and are you sure it doesn't interac with my other meds. Always bring a piece of paper with you, with your meds on it, it doesn't matter if it's the same doctor you see, they can't beging to know everything. It can save your life, to ask questions.


Stacey373 - October 12

Hi Auvonto - I totally agree with everyone else on here. As long as you don't panic over every little thing you can only help yourself in being proactive with this illness.

Actually, the internet is how I figured out what was wrong with me and my daughter! My daughter has severe ADHD and absolutely NO ONE believed me. They kept telling me either she was just acting like a "normal" kid misbehaving or that I was a terrible parent and needed to discipline her more. It wasn't until she finally got an older teacher who brought it up to me and then I was able to do the research for ADHD and bring all of it to a NEW doctor...she was then FINALLY diagnosed. (Thank God!)

The only reason I was diagnosed with Fibro was because I DID the research (I honestly believe that!) My friend's Mom has Fibro and I started realizing we had all the EXACT same symptoms. After years of doctors not having a clue of what was wrong with me...even 3 years with my current doctor...I took all the research paperwork into her and told her "this is what I have!" Even after being diagnosed with Fibro, I had to research ALL the reasons I was getting headaches and migraines and I took all that paperwork into my doctor a few months ago. (even with fibro she was trying to say my headaches were from stress, but it was way MORE than that!) I felt like I was doing all the work for her (what the heck was I paying her for?!?) but I realized that I HAD to do the work if I ever wanted to get some answers.

Like I said, if I hadn't of done the research on Fibro I think I would STILL be sitting here wondering what the heck is wrong with me. so don't let your doctor discourage you from doing this...and don't let him "ignore" what you tell him you've found. Find a new doctor who is willing to work WITH you if that happens.

Good Luck and Take Care, Stacey :o)


Auvonto - October 12

im glad to know that others feel the same way i do. thanks to you all for your help.


jrzgirl1 - October 14

Good for you, some DR's are self rightous and clueless, my pcp told me it was in my head, I knew it wasn't, my husband does not understand but one day he might


staceyw1 - October 18

It took me several years to get diagnosed with Fibro. Numerous trips to the doctor....blood test, x-rays, and alot of what ifs. I did alot of research before I got my diagnosis too. Its not self diagnosis.....its a way to help yourself feel better and peace of mind that there is a diagnosis out there. You will eventually find a doctor that will listen.


tia - October 28

Doctors!! Grrr!! Some of them shouldnt even hav that title they dont know wats g0in on with you and dont believe fms exists so say its stress and in your mind...any1 that tels me it cant b that bad and its in my mind i say darling live nt even a day jus a few hours in my body and then tel me its in my mind...


Auvonto - October 28

Tia, you said it right. live in my body for 5 mins. and then tell me it's in my head... I bet they will be singing another song then.



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