My doctor told me today he thought I was lying and manipulating him. I need to find a new pcp in the northwest florida area that will listen and take me seriously and never treat me like that. I need my federal disability retirement applicaiton narrative medical report and he doesn't want to spend the time on it. He has never read my complete history and today yelled at me and was verbally abusive. Any suggestions appreciated.
Florida has very good support groups......check with them if there's one near you.
Also, if you go to 'www.co-cure.org'.....they have a Good Doctor List by State. You might even be able to find one there.
It is frustrating and said that most of us have such bad time looking for a doctor. Please hang in there, don't allow those doctors get you down. An knowledgeable Internist should be able to find out whether you have ME/CFS, or FMS. A rhumatologist can also be helpful.
I had a doctor who believed that ME/CFS, FMS was real and had no known cure nor treatments when I first saw him. 4 yrs down the road I was leaving the area and asked for my medical records. Little did I know I was in for a real shocker.
He never did believe me and indicated in black and white and I was a patient who 'self proclaimed"' of having both conditions, regardless that I was diagnosed and confirmed of having these illness by at least 6 doctors, which included an Infectious Expert, a Rhumatologist, General Practitioners, and Internist.
I think some doctors who prefer not to believe in us, either because their lack of knowledge or they don't gain financially/egoistically by treating us and see no real results. Makes sense to ya'll? (wink)
i am so disgusted to hear how u were treated. it's so frustrating to be going thru all of this and have someone plying with u all of that time....i overheard one doc say that this was a female's disease and mostly in our heads.......psychosis
Please don't be discouraged.....there're many good doctors out there, just take time to connect with one.
The research for ME/CFS, and FMS both have come a long way for the past 14 yrs...and more doctors are well informed than before. I've been seeing a very compassionate, knowledgeable doctor for 6 yrs now, so it is not all bad experience that I have.
Please don't be discouraged.....if your fibro debilitates you, by all means apply for disability. Read all the 'how to's about application, make sure you're well prepared...then, go from there.
thanks so much for the encouragement. i'm trying to find info on how to come off work..i tried to fill out the allsup inquiry but it requires that ur out of work already. i'm currently applying for intermittent FMLA due to my current flare up. i'm so fatigued that it's becoming very difficult for me to function in the early hours of the day much less work my 12 hr shifts. i was hoping to atleast make it to jan...10 yrs on this job. but, it doesn, look like i'm going to make it.
"I think some doctors who prefer not to believe in us, either because their lack of knowledge or they don't gain financially/egoistically by treating us and see no real results. Makes sense to ya'll? (wink) "
Physicians (AKA: liars) like this need to be reported. Imagine if you were disabled and your employer's insurance company everything that this physician had said in the past ?
If a physician believes their patient is faking an illness, then it is their responsibility to talk to properly diagnose their patient and recommend therapy. However, these physicians need to rule out everything else first and if they don't believe in CFS or fibro, they need do their research and GET WITH THE PROGRAM !
There are tests that will show abnormalities in most CFS/FM patients. Your doctor will likely continue to be a.... , but it can help with disablity.
- Dysautonomia tests (tilt table testing)
- Low blood volume done with nuclear medicine (I dont' know if that's low in FM)
- Neuropsych testing. A 15 point drop from prior IQ testing is significant in the eyes of Social Security Disablity Admin, as is a positive tilt table test.
Of course for those you need a doctor, but to give you an idea..
(I've never found putting real test results in front of non-believers has ever gotten a sane reply. So sorry to hear you've met one of those.)
I was diagnosed almost 20 years ago by a rhumatologist (sp? - fibro fog). When I am in need of help, every complaint is "it's your fibromyalgia" and even when I was disabled on the job, was told it was "mostly fibromyalgia" and not injury so only got small settlement. The PA said "your fibromyalgia should be calmed down by December, (5 months from when statement was made). Each injury, insult to system puts me down further; like when I had a stereotactic biopsy, and then a surgical one. Yet, when I apply for disability they say "it's not that bad, you can work".
Well, I either can't sleep nights for more than a couple hours or sleep and sleep, all night and several naps during the day. Right now I am in a sleep cycle. I go to be by 9pm, sleep until 4, am awake for 1/2 to one hour, then sleep for two to three hours, and nap again around 11 am, and again about 6. So how do I go through the morass and get disability? My doctor listens, and then doesn't really hear. He put me on Lyrica, but it didn't really help much with the pain, it sure did make me zone out though.
I have a disabled husband, stroke with TIA's on occasion, diabetic as well. So can't have any more fog than necessary. Any suggestions? No home health - no family help available either. Step-mom has inoperable cancer, his family ignores him.
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