From what I've read many people are suffering from this but there seems to be no answer. Is it brought on by the fibromyalgia? It's a strange feeling, very hard to accurately describe. All I know that when it's the pain I know is ice, heat or massages don't work. I'm on medicine for it but doesn't always work. My doctor doesn't like to talk and has not looked at my file. Unfortunately is the only doctor I can see. It's been 6 years since my scan I need a new one but my MD says my pain doctor has⦠read more
I know many people who have seen chiropractors, and saw one myself for a work related injury who helped a lot. Good ones are wonderful healers.
Who aren't good healers are the two fools this unfortunate woman has fighting over her who DOESN'T want to see her. If I were she, I would report both doctors to the Missouri State Medical Board. And while she's waiting to hear from.them, look for a new doctor. And when you're calling around (unless you know differently), ask the staff if the doctor believes in fibromyalgia.
Did you know that fibromyalgia used to.be called hysteria? How much do you want to bet that a man came up.with that? So fibromyalgia gets a tiny piece of the research money pie and many decades later when we should know more, much more about this disease, we have stupid doctors covering for their ignorance by giving women patients especially the message this is all.in their heads or they're having emotional problems.
I had to tell.a man at dinner earlier this evening who asked me, " Didn't they just recently find out fibromyalgia is a real illness?" I had to inform him, since I know my history on the subject, that "No, they've known it's real for 3 or 4 decades now, but its been a hard disease to.pin down because it has so many different symptoms unique to those who have it." Then.I told him about the latest research I knew of going on at BostonMedical.
I could easily go on. Too easily. I hate hearing that doctors are taking advantage of their patients vulnerabilities. It's not right, nor Godly. Here we are, tired and in.pain, and we have to.fight for our rights, too.
@Queeneannex, Having grown up in Massachusetts, I was aware from an early age that this state had many excellent research hospitals and facilities. Boston was always the place to go for something truly serious, and I learned that people from all over the world would go there because there would be therapies you couldn't find elsewhere. In western Mass there are also quite a few good hospitals that are affiliated with the Boston hospitals. Until I moved back to eastern MA to take care of my Mom, I lived in western MA since the mid 80s. I got diagnosed with fibromyalgia in 1994 and then 2 more times. I was never met with skepticism, which is a common experience for others on this site. I have met incompetent health care professionals in the past 24 years, but I never went through any of the kind of experiences you describe some people having. And yes, I am fully aware that treatment varies by state and by gender. I used to be a Mental Health Counselor so I was always as assertive about my care as you describe yourself being. Also, I was alone, so no one was going to help me but myself.
I am as frustrated as you are. I first heard about this research at Massachusetts General on the news last summer. (We get the Boston stations for our local news). Then in the ensuing months I got the name of the hospital mixed up in my head, until someone asked me about it yesterday, then I felt I had to Google it. I found the information I had heard about it. On the news stations website was the link to website to get information about the blood test. So I went there. It sounded legitimate. It describes the test in scientific terms and says it is accurate and are seeking as many people with fibromyalgia as possible to be tested for what I understood were statistical reasons. You have to get your doctor's approval and sign up for it.
Thank you for the information you posted. The more we have, the more power we have over this disease which, by its very nature, can leave us feeling powerless. I recently came back from a vacation that was more ordeal than restful. So, I will close for now. I will add you to my team.
God bless you,
Kathryn
Mkathryn I am a Registered Nurse who has had this since 1992. I am extremely skeptical about a blood test for this. I have done extensive research but I am open to new ideas. I can't write much or I'LL disappear! New phone tomorrow though. I will be back. There is a blood test that shows an inflammatory process but it's not specific to Fibro.
The NE is much more advanced than the South though. I moved here from RI and the difference is amazing. There is a woman on this site who has a buprenorphine patch changed every 7 days for pain in Mass. Here you can only get it if you're an addict and in jail so they won't suffer from withdrawal. Poor darlings. It's ok for us to suffer through this and be denied relief. Of course sexism is Rampant as 80 Percent of sufferers are women. Jail is mostly male so there you go.
Not much has changed since 1992 from what I see on this site and yes I am extremely angry frustrated for all of us!!! I am fortunate in a way cuz I am relentless in receiving care. Very assertive. I was a charge Nurse on 3-11 shift ER Trauma Center so I had to be.
Before I lose you guys there's a website themighty.com Check it out- lots on Fibro, anxiety depression etc. Real stories. There's also the NFA a non profit for Fibro research. If you shop on Smile amazon.com you can pick them to donate to. National Fibromyalgia Association. You can follow them on Facebook. Well I am in tons of pain & gotta go as this will poof if I don't.
Love Annie πππ
@A MyFibroTeam Member, I have tried over and over to post this. I was mistaken. The research is at Mass General. The best link I could find is: wcvb.com>article>mass-general
I don't have a date, but it's easy to google and the article will lead you to an.important article on.getting a blood test for fibromyalgia that is accurate and will.go a long way to proving the reality of this disease to skeptics. God bless you.
Thanks Kathryn! Knowledge is Power! Keep the info coming please. I find it very strange with the discrepancy in med info between North & South!! I moved to Florida 3 years ago for the weather! It's kinder to the Fibro but I am thinking of moving back to RI, the care here just doesn't measure up. Love Annie ππππΌπ