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Fibromyalgia / CFS Community
This patient support community is for discussions relating to fibromyalgia, Chronic Fatigue Syndrome (CFS), and pain management.
Why don't people understand?
by AngieK45, May 10, 2008 09:33PM
Why is it that insurance companies don't understand fibromyalgia? I paid in Short Term/Long Term disability insurance at work. But after a 10 month wait while they evaluated my condition, they refused to pay me stating that Fibromyalgia was not a disability. If they ever actually had Fibro maybe they would understand. I don't know where to go from here. I need to work but I am unable to because my Fibro is so bad and I can't seem to find a doctor who is knowledgeable about Fibro to help me get it under control. Everyday for me is a new struggle. I have good days and bad days but I NEVER have a pain free day where I would be able to hold down a job. No employer is only going to let you work only when you have a couple good hours. What can a person do? Is it just me or has anyone else having the same struggles that I am?
It's all about the money. The pharmaceutical companies believe fibro is a real condition and yet the insurance companies don't because they don't want to cover the millions of people in this country who have fibromyalgia. It is an injustice... IMO.
One thing you may want to do is find a physician who knows how to treat fibromyalgia. Many of the experts are successfully treating fibromyalgia without Lyrica. To find a physician in your area who routinely treats fibromyalgia, you can view my profile and check out my website or check out one of the links I post on my website. Google "Co-Cure's Good Doctor List".
Good luck !
*sigh*
RoraFromDownUnda
Female, 45 years
Australia
Member since May 2008
Mood: RoraFromDownUnda confrazzled
******Wow an answer, but then she was promoting her own website ******
*sigh*
I found your contribution a bit cynical to say the least the contributor may or may not have a web site, however if you look at her profile you will see that she herself suffers from Fybromyalgia so she will be in a position to understand and help others with this same condition. We are all aware that we are not doctors and no one gives medical advice but when you are in a lot of pain and the so called medical profession dont know what it is, then surely having other people with similar or same condition helps one to believe that they are not going mad and someone else identifies with their pain. I wish you a pain free life. dont comment for the sake of it, think first. use your loaf ! I to suffer from fybromyalgia and it took years of going to rhumatology and other investigations before I got a diagnosis, I thought I was going mad or my pain was in my head. deep down I knew "you could not feel pain like this and it not to have a name" well Fibromyalgia is real and it is a condition:-
from the uk Fibromyalgia society http://www.ukfibromyalgia.com/
"Increased recognition of FM in both primary care and rheumatology clinics has skyrocketed since the publication of the ACR’s FM classification criteria in 1990. Medline references for FM soared and so did NIH funding as evidenced by the number of projects involving FM. From 1975 to 1990, there were only 17 projects. From 1992 to the present, there have been 500 projects involving FM. Diagnostic criteria also set the stage for epidemiological studies, demonstrating that FM in the general population has a prevalence ranging from 1.3 to 7.3 percent.
FM carries an annual direct cost of care over $20 billion. People with FM account for a large proportion of rheumatology outpatient visits and FM is the second or third most common diagnosis made by British rheumatologists. In a cross-sectional mail survey of Canadian rheumatologists, FM was listed as one of the three most common diagnoses among their patients. In an Israeli internal medicine ward, 15 percent of the inpatients were found to have FM and FM in hospital patients could be more common than reported findings.
Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition According to recent research; most patients can expect to have this problem lifelong. However, worthwhile improvement may be obtained with appropriate treatment, as will be discussed later. There is often concern on the part of patients, and sometimes physicians, that FMS is the early phase of some more severe disease, such as multiple sclerosis, systemic lupus erythematosus, etc. Long-term follow up of fibromyalgia patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with "well established" rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren's syndrome to also have fibromyalgia.
Angie K45 keep posting you have helped me.
, May 12, 2008 12:32AM
Hi Rora,
If that comment was in response to my comment, I wanted to let you know that I already discussed my website with MedHelp manager's. They understand that both fibromyalgia and CFS are fairly new conditions... there is new reserach coming out on the daily basis and a lot of information that newly diagnosis patients need.
You see some links are not allowed here... if you post a link to an organization (like co-cure), it will often be automatically deleted. And we have copyright laws, etc. If I were to post all of the latest research... then it would be a TON of information and then it would end up disappearing, as more people post.. it would end up being lost.
So what I do plan in the future... when I have the energy to hopefully copy a lot of the information I have already posted on that non-commercial website (where to find a knowledgeable FM or CFS physician), etc. and add it to our Health Pages. But I need the time & energy first and want to run it by the MedHelp manager's.
I hope some of you will be interested enough to make your enquiries about it but dont be surprised if your doctors either pretend not to have heard of it or refuse to prescribe it as it would be "off label".
Best wishes to all.
Thank you for the information, bev ! And some links are allowed... I know that MedHelp will approve some of them and also governement links. I think they are mostly concerned about suspicious links, spamming and links to other message boards. It is also okay to let members know what they need to google to find certain information.
Stanford University is also the place that came up with the Valcyte trails for CFS. I'm thrilled that they are taking both CFS and fibromyalgia seriously ! I applaud any and all physicians who care about CFS and fibro patients.
Interesting website. You know I believe that fibromyalgia and CFS could turn into an autoimmune disease (it has to do with mycoplasmas... Dr. Garth Nicholson sums it up very well).
I think that rheumatologists don't really know much about autoimmune conditions and that more research funding (allocated to the right people) is needed.
Best,
PlateletGal
Wow ! I just noticed that the physician quoted on your website recommends antibiotic therapy for both FMS & CFS. That is what I was doing (I'm currently on Dr. David Jernigan's treatment... which also kills the mycoplasmas, etc. but uses natural formulas instead).
There is a non-profit organization called "The Roadback Foundation" that also recommends antibiotics (believe it or not) for people with FM and autoimmune conditions. They have many testimonials on their website.
Why aren't rheumatologists paying attention to this ? That is my question. All of these physicians I know who have CFS have treated their condition using antibiotics !
I also understand about being a little worried about asking a doctor for a stronger pain med. The first 2 months after being diagnosed, I really didn't know what to expec as far as my Rhuemy was concerned. When I had my 3rd appointment with him, he sat down and looked me square in the eye. He asked me if my pain meds were working? I told him on most days they were but on other days nothing worked.
He then told me that in order for him to help keep my pain down I had to let him know what was working and what wasn't. He has me on a cocktail of meds that do work now. He also gave me a script for Lidoderm patches to put on the trigger points when I feel them begin to start tightening up. I cut them in half and place a half on each inner elbow, and on my neck and back. I also put them on my inner knees, and they do help e get relief
I'm not saying that I have all of my