This just blows my mind..

http://www.nytimes.com/2008/01/14/he...ia&oref=slogin

I am moving out of Vegas as we speak...because I have a dr that has his "head in the clouds"....

It makes me so sad for these people that are truely suffering...Will this ever end?

Heather

It's too bad that they have to come out with articles like this to beat down what years of trying to get a disease acknowledged has done.

I have a friend that was diagnosed with Fibro back in the 70's before most people had even heard of it. I don't think it's that new of a disease, some of the Drs. just won't acknowledge it.

My PCP had doubts at first on it but when I got diagnosed he jumped on the banwagon and started trying to calm it with PT, triggerpoint injections and meds.

My thing is what right does a Dr. have to at least not treat a person for it wheather they believe in it or not. If you have been diagnosed with a disease and it is acknowledged by the Medical Associations then the Dr. should have to acknowledge it.

Heather, I think it's horrible that you are leaving Vegas to get better help. I will say though, I do believe you. Bill and I moved back to Ky. for awhile in 95 and we actually moved back to Co. to be around our Dr. We had found one Dr. there that would take care of us, me with no insurance and Bill with Medicare, but he had a heart attack not long after we started going to him. Then we looked and looked and no one would take care of me. I would have died if I had stayed there. I did finally find the University of Ky. hospital but they turned out to be a joke. I donot like learning hospitals. My Dr. told me himself that I was being used for a guinnea pig in those places. I don't want them to learn on me. I want them to take what they have already learned in school and in practice and take care of my medical issues. Co. has the best medical care for people with no income nor insurance then most places I have heard of. When people don't have insurance and need help then that is what we need.

As far as the Lyrica, I couldn't do it due to the side effects. I do question the thing about the weight gain though. I actually only took 2 and gained 7 lbs. Now I am working at getting it off. For a lot of people weight gain is a death wish when they have other medical issues. If it helps people then they have to weigh the pros and cons.

If these Drs. really believe that there is no such thing as Fibro, and are dedicated to trying to get other people to believe it then it is going to undo everything that has been done for it, what little that is. I think it's one of the least researched medical issue right now due to the nonbelief in it.

Ada

This upsets me...I see the fibro and RLS commercials and just sit and wait for a RSD or TOS commercial... It seems like its always 1 step forward and 2 steps back... Its truly sad... My mom has Fibro.. I know its real... and ppl who discount a disease that they just cant dx with a x-ray, cat scan, or physicaly see it it must not be real!


It truly makes my heart hurt for those who are suffering with invisable diseases... I pray some day that we all will be cured...

Hugs and pain free days ahead!!!

Love J

This statement is what makes me angry: The article suggested that the pain of fibromyalgia is a case of people who “obsess over aches that other people simply tolerate,” and that the pain is just a “physical response to stress, depression, and economic and social anxiety.” My story below will let you know how much I obsessed over the pain I endured for years without going to a doctor over. I didn't.

I have FM. I have ached with pain all my life long. Starting back with leg aches when a little girl my Mom told me. She even took me into the doctor & this was in the 1950's when parents didn't take their kids to the doctor for hardly a darn thing. They couldn't afford to do that then at all. They told my Mom I had growing pains is all. I use to curl up on our couch & sob with the pain. And I had a high pain tolerance even then. I also was not one as an infant to want to held & cuddled, especially when I was sick Mom told me. She couldn't figure that one out since my older brother wanted held especially when he was sick. So after the growing pain dx, I was told to pretty much suck it up & deal with it. Everyone probably hurt like I did so quit complaining. And that is what I did. For the most part, altho I would ask of girls when in Jr Hi or HS if doing this or that in PE or in sports made this hurt or not. I asked only occassionally.
Just a bit of my background that pretains to my having probably having FM my whole life.

I was having a difficult time getting to sleep & staying asleep so I went to my doctor in the spring of 1999. Low & behold, after weeks of medical hystory being taken on me & female relatives on my Mom's side, blood tests taken, xrays, MRI's, & a myrad of other tests to rule in or out any & all disease process' my PCP diagnosed me with Fibromyalgia which use to be called Fibrosistitis or something like that. Luckily for me I had a very progressive thinking/believing doctor or I never would have gotten this DX back in the spring of 1989. Once he explained to me exactly what Fibromyalgia was & all of it's symptoms & how I had all of them & how he had ruled out all other autoimmune diseases such as Lupus or MS, etc this is what he determined that I had. I had never heard of it before. Like I said though once he explained to me about the widespread pain involved & that all the pain that I had endured my entire life & of the pain I described to him that my own Mom & her sisters talked about having had most of their lives was NOT, NOT endured by other people on a day to day basis 24/7. I was in shock. I had been led to believe as my Mom & her sisters had been that most everyone else also endured pain like we had. There still wasn't any actual treatment but atleast I knew that the pain I endured wasn't all in my head & that all the sleeplessness had a reason also. I felt validated anyway finally.

And now to have a doctor/s say there is no such thing as Fibromyalgia does a huge injustice to all of us & to alot more women & men to come behind us who may not receive this diagnosis. I take a low dose of Lyrica, but I do think it does help with my Fibromyalgia pain. I take it along with Neurontin & together they work well to also control my RSD pain. I do hate the side effects of weight gain & sleepiness. I have been on Lyrica for over a year now & I am still extremely sleepy from taking it & I did gain approximately 25lbs which I wish I hadn't gained from taking it. I am just now starting to slowly take some of that weight off. It is a struggle. So patients should think it thru before taking Lyrica if the weight gain will be worth any help the med will give to them.

DebbyV

Your story is a lot like mine.

I delt with the so called " growing pains". I cried myself to sleep each night with them. I also delt with cronic fatigue as a child.

We lived in the country and Dad only took us to the Dr. for other things such as cuts that needed stitches and nails being pulled out of our feet that we jumped on. He actually had insurance on all 10 of us but just didn't believe in going to Drs. He put me on one a day vitamins to help with the fatigue and I couldn't keep them down. They believed in mostly old time remedies such as hot castor oil in the ear for earaches. I had them all my childhood along with toothaches. We did still try to function as normal kids back then because of the Drs. not knowing about these illnesses back then.

I think a lot of us can endure medical problems pretty damn good. A lot of us have been through hell with the Fibro and the RSD.

I am wondering if these Drs. that believe this will start pushing harder for their ideal to be known and believed.

Ada

Ada,
Oh my Mom use to warm up olive oil & pour down our ears when we had ear aches. Also plastered Vicks on our necks & chests when sick. I remember wrapping an old sock around my neck & pinning it with a safety pin. It helped too. But yes the old fashioned way of doing things. Plastering 'mudd' on wounds etc. And I grew up on a farm in Iowa. We lived about 8 miles from Sioux City but like you we didn't go to a doctor for much of anything. We always took some form of vitamins & minerals even as tiny kids we took them & I kept them down fine. I wasn't an overly sick child at all. And luckily for my brother & I we neither one ever had stitches or broken bones & we didn't step on a nail even as farm children. *L* My one aunt thought it was cus my Mom was overly protective & never let us, especially me, get dirty *ROFL* Mom was overly protetctive, but Joel & I still played & got dirty & stuff. We were just careful, but mostly LUCKY to not to get hurt. We ran & climbed & jumped from trees & swung from ropes in the barn. We were extremely lucky I guess not to get hurt *L* so we didn't even get to a doctor for any of what you went for.

Like you I endured too the pain from FM. I would go out for sports, track is the one I was the best at. Short sprints were my specialty. I would ache so bad after practice I wanted to die, no one else seemed to hurt like I did, but I kept it to myself. I was in drill team also during the winter months. So pain was a friend. And it pretty much is still a friend, all be it, one I could live without *L*

DebbyV

There were 10 of us and my Dad was very protective too. My Mom was too but when Dad worked she had a time keeping up with us.

We jumped out of barn lofts and did jump on rusty nails at times. Broken collarbones, arms, you name it. Mostly the 5 boys though.

I was the only one sick in the family and it's pretty much that was today. I did lose my two sisters and a brother to cancer but they were healthy until they got the cancer.

I was lousy in PE or sports. I could not run for long, jump very far, or do PE of any kind very good. It was mostly because of the bad health I was in as a child.

I grew up on a farm in Ky. We had relatives all around us so we had ball games going. I was able to do some things but I couldn't do what healthy kids did.

My Dad use to get rid of anything we got hurt on. If we got hurt on a bike he gave them away. If we got hurt on a horse, he would sell them. He always said he'd never have anything around the place we could get hurt on. It didn't always work though as I said. We still found ways of getting hurt.

My childhood was horrible though due to my CF and other health problems.

Ada