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A study on # times we got incorrect care blamed on fibro??
6 Replies
m.e. - May 22

Sound like a good idea? I love how recent research is showing how fibros tend to "catastrophize" over their pain and condition. I find that extremely insulting. Let the rest of the population experience a day of what we do, and we'll see if they "catastrophize."

Related to that is insufficient and incorrect health care & arrogance from doctors who know little about our condition. I recently complained to 2-3 doctors of weeks of terrible belly pain. I was told it was reflux. I knew they were wrong, and that I was going to need to be hospitlized if this was not properly taken care of. Luckily, I contacted my gastroenterologist, and he did an upper G.I. I had a stomach infection!!!

My dentist did an unneccessary filling on the side of a healthy tooth that was next to a dental implant. I kept complaining of pain and discomfort. She placed the same filling twice--$$$ cha--ching!! I was in such terrible pain, and she said I was "so sensitive" due to my fibro. Found a great dentist, and it ends up the tooth was exposed and filling was loose for the 2nd time causing great pain. Sad how I want to hug and kiss health/dental professionals who actually listen to us and do their jobs correctly!!

I am dismayed at how we are are treated and sterotyped when we do not get proper health and dental care. Sorry to rant...thanks for listening!!....any stories to share??


kvc33 - May 22

All I can say is it's a good thing you know your body best and when to seek a second opinion. I had a gynecologist who wanted to due exploratory surgery on me for a condition I knew I didn't have. When I declined he was a total ass about it and treated me like dirt. Years later I found the answer to my problem on the internet. It had nothing to do with what he said. Doctors have failed me totally. I don't know any who specialize in treating CFS. I continue to see my doctor because he always does what I request and is a nice man but he knows nothing about my health problems. Doctors that are taking new patients are hard to find so I'm stuck with do-it-yourself care. I'd be afraid to go to a new one and be treated like dirt.


January - May 22

I agree!! I could rant on this for hours! 20 years ago, fibromyalgia was taken more seriously. It is classified as an arthritic disease - because it WAS considered a disease of painful muscles, connective tissue and trigger points, with insomnia. Blame the drug reps for "re-educating" the doctors so they can sell more highly addictive, zombifying meds. There has been a subtle reclassification going on for years and a huge marketing and media campaign. Now fibro is basically a "mental illness." I am thinking I will no longer tell medical people (other than need to know rheumy) that I ever got this diagnosis. I can see their eyes change!

What happened to you is inexcusable! Your case just emphasizes how if we don't get treated well the first time, we should move on.

Fibromyalgia is, above all, PAIN and EXHAUSTION - don't you think? It might be a viral illness or something like malnutrition. I remember back when many doctors thought Lyme Disease was imaginary, but that community organized to get publicity and fight for research.

I'm really glad you got to the root of your problem with the dentist. Shame on her! She needs a reprimand from her professional board.


January - May 22

kvc - I take the same approach as you. Educate myself, and have a nice doctor who works with me. I had years of surgery that I was told might help with my fibro pain (it didn't) - and I was stupid to trust them. Live and learn.

I found a good website - CFS Central. Some good ideas there.


Jaopfer - May 23

I have suffered unbelievable pain for over 30 years and gone to the same doctor for 20 years. It was only when he filled in a form which I read, that said I suffered from fibromyalgia. Recently I asked him why I had put on so much weight when I was eating very little. He replied that I must snack alot. I was furious! I asked him if there was any point complaining about my severe back pain..he said no, my back is damaged. A few months later, still putting on weight, I passed a kidney stone about 8mmx2mm. I bled for 3 days sitting and sleeping in the bathroom. I lost 20kg in 3 weeks after passing the stone. A week later I visited the doctor and told him what had happened and asked him for antibiotics for the infection in the kidney. I asked him what the 20kg was..his reply..well it doesn't matter now, it is gone.
My latest problem is very low blood pressure when lying down. Sometimes I have trouble even opening my eyes or reaching for water on the bedside table. I have trouble waking up, when I can sleep! BP when lying down drops to and stays at 80s over 50s. Usually about 84 systolic over 56 dyastolic. Any clues on this??
If I try walking around for several minutes or even cooking a meal, I start sweating from the head and it soaks my hair and runs down my body. BP then rises to 160/110ish My doctor said it is probably menopause...I am nearly 60!! I am so sick of the incompetence. I have a neck injury, a very fatty liver and mitral valve disease, which I guess doesn't help, but I don't drink or smoke and eat healthy food.I also developed an unusual lump in the middle of my breast bone at about 13.
Just wondering if anyone knows a decent doctor in the Illawarra?


Fantod - May 23

Jaopfer - I Googled Illawarra and fibromyalgia and came up with Dr. Guy Bashford who is a specialist physician in pain medicine at the Port Kembla Hospital. He has a very strong interest in Fibromyalgia. I hope that this helps. Take care.


January - May 24

Hi jaopfer -- sounds like you might be describing what is called "postural hypotension" - though usually the BP drops when you stand up. You say it drops when you lie down. Google it and read some of the longer articles. There are MANY different drugs and MANY different diseases that can cause BP abnormalities. It can be related to things like heart disease or diabetes or a variety of other conditions. Your doctor is an IDIOT to dismiss it, as if you faint in the wrong place - you can REALLY hurt yourself - I did. They can test you for postural hypotension in the office: you lie down for 15 minutes and they take your blood pressure. Then you suddenly stand up and they take your blood pressure again. If there's a significant difference, it should be investigated. Antidepressants often cause this, but many other drugs do too.

And, just thinking -- there's something called "labile hypertension," which means your BP fluctuates more than it should. A BP of 160/110 is considered hypertension. Again, this should be treated, not ignored!

If you are able, you might want to change doctors and get somebody who listens to you. This person sounds like a jerk - and it's your health on the line. Wishing you the best, and hope you take a stand for yourself.



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