It's rare to find someone with fibromyalgia or chronic fatigue syndrome who's never had a problem with a doctor, or had serious frustrations getting a diagnosis. When you're trying to deal with a debilitating illness and then you butt heads with the person who's supposed to be helping you, it can leave you scared, frustrated, angry, and at a loss as to what you should do about it.
The reality is that you need to be your own patient advocate. That's not always easy, so I've compiled several articles from About.com's Patient Empowerment site, where Guide Trisha Torrey shares her expertise on how to deal with some of the problems those of us with these conditions frequently face. You can find it here:
If you're having problems that aren't covered there, browse through Trisha's site: Patient Empowerment. You can also visit her forum to see how other people may have dealt with similar issues. And don't forget my forum as well, if your problem relates directly to fibromyalgia or chronic fatigue syndrome.
What kind of problems have you faced with doctors? What frustrations did you have on the way to your diagnosis? How have you handled these problems? Leave your comments below!
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What problems have I faced with doctors? Please don’t get me started. Because they are not trained because there is lack of solid reseach they rush you out of the office for the next patient who they will hope to have an easier time getting thier bread and butter for the day.
Because of this ignorance I have had terrible trouble acknowledging I can no longer work and need to look like a looser on disability pension. Not only does the loss of dignity end there but I’ve been appealing for eight months the Centrelink decision with first the tribunal, then the Administraive Tribunal then the Ombudsman all to no avail. The Ombudsman rejected my clain. Not acknowledging my accurate evidence but by reading the faulty doctors reports. THESE DOCTORS ARE NOT EVEN ACKNOWLEDGING I’M AS ILL AS I AM. NONE HAVE TAKEN THE TIME TO LIST EVERY HURT PAIN OR INABILITY TO MOVE. LET ALONE CARED. Yesterday Centrelink CUT/ me off parenting payments. Strange..I’m still a parent and it is school holidays. My daughters birthday next week. No money. Next thing is an eviction notice. NICE ONE DOCTORS. NICE ONE GOVERNMENT! NICE ONE ALL YOU THIEVES WHO THINK YOU HAVE A PRESIGIOUS JOB BUT YOU USE IT TO OPPRESS.
It took 7 years of going from my primary care Dr to a number of different specialists. After a barrage of bloodwork tests…I remember my primary Dr saying ” Diane, I know you are in pain, but you look great on paper”.
I went home in tears and decided that if I have to live with pain then I should see a pain specialist. I found a Dr close to my home with great credentials and I went to see him ( I took my husband as a witness to my pain ) The Dr listened closely as I described all that I had been through. He said with a smile “Let’s take a look”.
It took him no more that 10 minutes to look me in the eye and say ” I know exactly what is wrong with you…..you have fibromyalgia”.
With that being said…..Don’t give up !!! Keep searching and you will find someone who will help you.
I have been diagnosed with Fibromyalgia for over 8 years, and back when i was going through the beginnings of this disease, it was a living, waking nightmare trying to find out why i all the sudden could no longer get out of bed each day without agony. After needles injected into my supposedly “swollen” joints (excruciating) and test after test after test, my primary told me it was all in my head, and that maybe it was because i did not want to do housework. It took a visit to a ear nose and throat doctor to find out it was fibro. I was at the ENT for nose surgery for polyps, and while i was there he checked my jaw and found crystal clear TMJ. He proceeded to ask me how i felt each day and a myriad of other questions, and then looked me dead in the eye and told me i had fibro. This was two years after the beginning of the disease and at this point i felt sure i was insane and would never know for sure what was wrong with me. Suffice it to say, that i cried the whole way home, and it was relief, not fear, that had me sobbing. When i went to my primary doctor for a confirmation of diagnosis, he examined me, said yes i had all the symptoms, but that fibromyalgia was a made up disease fabricated by housewives to give them the excuse to be lazy and not have to do their every day chores. He then stuck a two inch long needle into each hip joint to “relieve” my pain, gave me a prescription, and sent me on my way. The relief i felt before was gone, and i cried all the way to the pharmacy feeling like a lunatic that needed to be locked up, and hating him with my entire being. After countless doctor visits (with a new doctor by god!) a definite diagnosis was made of Fibromyalgia, and ever since it has been a daily struggle to overcome and work through this disease…despite the lack of care most doctors give. I find my information online and make damn sure i know what i am talking about before i go to the doctor so that i do not ever again get mistreated. Standing up for ourselves is the best thing we can do for our disease, and if your doctor is ignorant, FIND A NEW ONE. You CANNOT trust someone that thinks you are faking or crazy, and if you cannot trust them, they cannot help you in any way.