This one can come from anywhere, but it seems most prevalent in the medical community -- "That's just what they tell you when they don't know what's wrong." The belief is that fibromyalgia and chronic fatigue syndrome aren't "real" diagnoses: doctors just give them to people they can't diagnose properly (or who don't have a real problem), so the diagnosis is meaningless.
This myth is partially true, unfortunately, but only when you're dealing with doctors who give these diagnoses but don't understand them. They may be perplexed about what's going on and decide, "I can't find anything causing this pain, so it must be fibromyalgia," or "There's no reason for her to be this tired, so it must be chronic fatigue syndrome." These doctors generally aren't familiar with the full diagnostic criteria, and they don't always go through all of the steps necessary to rule out other possibilities. These guys are obviously doing a big disservice to their patients, and they're hurting the rest of us as well.
What the medical community as a whole needs to realize is that these conditions do have very specific diagnostic criteria, and when they're followed, it's not a "wastebasket diagnosis." We've had studies showing that the criteria do successfully separate people with our unique symptom clusters from people with other medical problems, and believe me, when we get together and compare notes, it's pretty clear that we've got far more in common than just pain and/or fatigue without an obvious source! We discover commonalities in sleep problems, irregular temperature fluctuations, hair loss, sensory overload, allergies and sensitivities, word loss, short-term memory problems, intestinal issues, vision, etc. You're not going to find those widespread similarities in people with an invalid diagnosis.
I don't know how I've been so fortunate, but I have yet to have a doctor question my fibromyalgia diagnosis. I know the day will come, and when it does, I have a response prepared: "Are you too lazy to keep up on the research, or too stupid to understand it?" Seriously, folks -- if we can all dig up scientific studies and understand them through severe brain fog, it takes a special breed of incompetence not to see that there's something very legitimate going on here.
We've got well-documented dysfunction in our central and autonomic nervous systems, immune response, hormones, blood flow, cellular reproduction and more. These doctors need to update their thinking and stay on top of things, because by sticking with dark-ages thinking they're violating their oath to do no harm.
Have you run up against this myth? Do people close to you believe it? Leave your comments below!
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So true! Especially the last paragraph.
a close family member works in a hospital environment and she has apparently discussed me/cfs with her colleagues and none of them think it is anything more than a handy bunch of symptoms for benefit bludgers and scammers to use in order not to work.
You can imagine how hurtful such a view is to me personally from such a close family member – especially when that viewpoint is passed on to other family members who trust her medical knowledge.
She defends her opinion by saying that it’s based on the viewpoint of her trusted colleagues. you can see why i rarely visit home any more.
I agree completely. My wife was being treated for fibromyalgia for three years, nothing helped. Last week she started a gluten-free diet, and has been feeling better ever since! We have NO idea why one of her many doctors never suggested trying this simple thing
Given the dominance of the psychosocial school in many countries it has become a wastebasket diagnosis. It shouldn’t be like that but it is. The name CFS doesn’t even begin to describe this disease.
I’ve kept a list and have seen over 20 doctors in the last 4 years and only one has outright yelled me out of his office, a couple more have scoffed at my symptoms, most of them are just at a loss and don’t really care otherwise, and about half a dozen of them have been intrigued/concerned without knowing what to do, and I have been lucky to have two doctors (an infectious disease and a rheumatologist) who have educated themselves and given proper diagnosis and “treatment” options. The infectious disease doc had me try EVERYTHING before diagnosing with PVCFIDS becuase he kept saying “once I give you that diagnosis, I won’t know what else to do!”.
The Rheumatologist is very familiar with Fibro and helped write the Idiot’s Guide to Fibromyalgia. Still not a lot to treat it, but we’re trying!
Friends and family took a long time to come around. Dad went back and forth between being in denial and being convinced I’d picked up a foreign disease when I traveled abroad. Mom has always been on my side, as she lives in “the world of the sick” as a survivor of a massive stroke. (Older folks and those who have experienced illness seem to really empathize). I’ve had cancer survivors hold my hand in Knowing and empathy, and physical therapists and massage therapists give me complete faith that they understand something is really wrong.
Don’t listen to the nay-sayers. They are so just a waste of time and energy. Reach out to those with open minds and open hearts.
I was a hair’s breadth away from spinal fusion when the neurosugeon scheduled to operate on me cancelled and suggested I find a sympathetic and thoughtful neurologist. For a time I though “sympathetic neurologist” was an oxymoron.
Finally through efforts of a combination of a very good neurologist, orthopedist and rheumatologist fibro was diagnosed.
En route one neurologist asked what I was doing in his office — he told me I seemed to have plenty of pain meds, so what was my problem? I told him part of my problem was alleged physicians like him.
My family (Mum, Dad, brothers and close friends) and people who knew me well and care about me have aknowledged I am and have been seriously ill. Doctors however have been absolutely cruel. Shuffling me out of the office before I have said half of what is going on. It is very limiting to a patient who is seriously ill to not only describe symptoms that have not been described before and to inform them of the method of how they can validate my claim if they would step out of their box. I suggested the doc place his stethascope at the base of my brain at the back to head where he would hear the hormones oozing into over action from a gland there and then further down my neck while I turned my head so he could hear the loud crunching while I painfully moved my head to the side in as far as possible being only a limited amount of movement. Also if he could just feel the raging heat on my head as my hypothalamus was in overdrive since my husband had almost beaten me to death. That stress almost destroying me. Boy, was I nuts to think doctors cared to know how to heal. Let alone cared to listen to another human being speaking outside their scope of understanding. Just for clarity my husband had no cause to smash into me. I was not winging nor was I shunning duties but after that I ould not.
DO NO HARM, is right. I know people who their famly was told they have FMS just to get them out of the office. On the other hand you would think the Drs would hear these syms enough that they would be more like the sciencetist that they are suppose to be and connect the dots. I was lucky about the 5th Dr. I had to see for workmans comp called it Fibrostis 25+ yrs ago. Just because it says Md or Dr.on their calling card does not mean they know or care. The graveyards are full of their mistakes or failures to educate themselfs beyond what it took to get that calling card. Just remember one more thing” FMS does not kill you,,,,,,,,,,, it will only take your life.” Lonnie
It should also be strongly noted that fibromyalgia is physically detectable. A massage therapist or physical therapist can feel the knots and taught muscles.
Some people just have stress. But this is everywhere, all the time.
My neurologist told me that when he went to medical school, he would bring this up and they told him that whatever he thinks he can detect doesn’t exist.
It wasn’t just us that received a cold shoulder. So did rational doctors and researchers who could see something is obviously wrong.
A lot of people are misdiagnosed (including the leader of our support group, who was later found to have reactive arthritis). A lot of people also have multiple things going on, so diagnosis can be complex. But you are indeed fortunate not to have suffered indignities at the hand of doctors.
The rheumatologist who diagnosed me simply stated that “we diagnose it; we don’t treat it.” After I was told at work that I needed to take some sick leave since something obviously was wrong, my primary care physician wrote “gastric reflux” on the form in regard to the nature of the illness. I said, “The rheumatologist you referred me to reported a clear diagnosis of fibromyalgia (the report had been sent to my physician weeks earlier). In disgust, my physician said, “Okay, then, fi-bro-my-al-gia” (he sarcastically enunciated the word); “that’s what we’ll put down.” But it has been a learning experience for him. He can now pronounce the word without disgust, even while he still never asks about my symptoms and I have learned not even to discuss them.
Actually a Rheumatologist told me that I did not have fibromyraglia because the trigger point test did not match my pain. The final diagnosis was “undefined immune disorder”. However, I have had chronic fatigue for over 20 years and most recently developed the severe pain after an allergic reaction to an anti-biotic almost 2 years ago. Now when I get sick or worn down, not only do I get tired but I also have the temperature flucuations, the severe pain, etc etc. This is a great support newsletter because everytime I read it I find something that I had recently gone through and did not know it was related to all of this – the most recent being the temperature flucuations when I had the stomach virus. It always takes me at least a week to get over anything and this took me 3 weeks. Thanks for all the info and communication and suggestions. I greatly appreciate it.
I am sick of doctors and other people saying that FMS is a waste basket diagnosis. I walked out of a doctors office for telling me that. If people could live in my body for one day they would understand better. I’m tired of people not understanding my limitations.
The “wastebasket” comments really bug me, too. Besides being completely inaccurate, they are also entirely insensitive.
I have actually been carrying the Canadian definition of CFS as well as a list of documented objective physical abnormalities around in my purse as a result of getting so fed up with this type of response. Anyone who dares make such comments to me anymore can see some evidence that it is not a wastebasket diagnosis. I really wish I could get them to read Osler’s Web, though!
Also, there is an excellent article (well, at over 400 pages, I don’t know if article is exactly the rt description) that was recently put out called, “Magical Medicine: How to Make a Disease Disappear”. The author is Malcolm Hooper and it can be found online. Over 100 pages of this article are about the real physical issues that are part of CFS. Just the table of contents alone (which breaks down the physical abnormalities by systems and parts of the body) should be enough to convince most people that there is substantial evidence that this is not a wastebasket diagnosis and that the biomedical abnormalities are very real.
There is a lot of other very compelling material in this article, too, including more info about the UK’s secret files on CFS. However, just for the purposes of pointing to the physical issues, it is definitely worth reading.
My last GP appointment when I tried to get the GP re-assess the med combo I’ve been on for 5+ years was met with “Let’s get to the ROOT of your problem… your weight.’ I’ve got a full house when it comes to trigger points and I barely have the energy or enough relief from pain to look after myself, let alone hold down a job. And after deciding that, and making it abundantly clear that he believed FMS was a throwaway diagnosis for the terminally fat and lazy, he actually told me that he knows very little about fibromyalgia. Really. I’d never have guessed.
I encouraged him to re-educate himself and I will never see him for medical advice of any sort again. If I’m laying in the road bleeding to death and he’s the only doctor available, please just let me bleed to death. I’m sure he’d simply assess me as ‘laying down because she’s fat and lazy.’
I firmly believe that the only way we will ever convince people of exactly what we are suffering every single day is to come up with some sort of drug cocktail for a month – for them. Give them something to mimic IBS and over stimulate their nervous system, mess up their coordination, and make even the tiniest pain amplify by 100 and then slip them an Ambien at the beginning of a workday and see how well they can function on the job. They should be helping us to deal with the symptoms or researching a cure – not blaming us and treating us like hypochondriacs.
I do not go to doctors anymore. They have not helped me one bit. I have however been denied health insurance because of the diagnosis of fibromyalgia. So the diagnosis for me has not been helpful and has actually hurt me. I spend the money I save from not being able to get insurance, on cranial sacral therapy and lymph drainage. I have been steadily improving with no meds and no medical care otherwise. So I actually do believe that diagnosing someone with fibromylagia is a horrid thing to do to that person.
I knew I had fms (from my own research), but when I mentioned this to the dr. she stated that it was “a wastebasket diagnosis.” Another year passed and she finally gave me the referral for a rheumatologist. I almost flew off the table when he was checking the points. He gave me ultram (yuk), and said that was all he could do.
When I went to a psychiatrist, she understood and gave me meds for sleep. When I went to another rheumatologist, he sent me for a sleep study. I slept 244 minutes (with drugs) and was told that I did not have fms and needed behavior modification.
Just this past summer when I had a sinus infection another dr. told me that fms was “all in my head.” I was stunned, and told him to just give me the antibiotics. Later I was angry with myself for not telling him off, but I just wanted to get the meds that he didn’t want to give me because “too many antibiotics are prescribed in this country.”
arrrggghh!
I finally took myself to Mayo Clinic and was diagnosed in 20 minutes with childhood fibro after 10 years of being told I was just a crazy drug seeker and see a shrink. I also have RA which is a indicator for fibro. The scary part was the Mayo rheumy found in my RA chart from my rheumatologist that he had diagnosed me with fibro 3 years ago and never told or treated me.
My primary had gotten copies of these notes, and when I confronted her she said “fibro is thrown around alot, but now that MAYO says you have it, you do!” I about threw up and switched primaries immediately. 3 additional years of suffering. MORONS.
This is so sad and harmful to us all with fibro.
I broke my leg in 2008, and have been being treated by a friend since then for knee problems, muniscus tears and ACL damage on both knees. While still treating my knees, with surgery and injections, he suggested I see a doctor in another town, (rheumatologist), when I asked why he said I think you also may have fibromyalgia. I thought he was wrong and did not go. That was in April, 2008 but by November I started feeling so sick with jabbing pains, leg aches, stomach spasms. Went to the ER twice, they tried there best, but they never asked me about my fibro that I maked do on my intake form. It was then I did some investigating, and found so many things that I was experiencing were signs of fibro.
It was time for my PCP check up and I explain to my doctor everything that was going on, I was very lucky, she immediately ordered tests to rule out other possible problems……………and then refered me to the same Rheumatologist. I asked if she thought I had fibro and she said “yes I do”. Needless to say I made the appointment and have the diagnosis of fibro.
My sister, is the doubting Thomas, and it hurts my feelings and I told her so. I also said I choose not to talk to her about it. Oh, forgot to mention my nephew, her son, works as an Assistant to my orthopedic doctor, the person who first informed me of his suspicions. My nephew is a wonderful person and I love him very much and is quite talented as an assistant but he, like his mom, think that is it a catch all diagnosis.
I mention I thought it was harmful, I have battled with depression most of my life and who knows how someone with depression will react to doctors family or friends who are not informed and tell you to get out there and exercise that’s all you need to do. Then you feel lazy or crazy.
Well good luck to all. I have not been well since November 17th. Still working on it and reading all I can.
I have seen three neurologists, and a CNP in neurology. Because I have multiple findings (like cervical sondylosis (arthritis in the neck), a large benign brain cyst, cavernoma, and multiple ER trips for things like dizziness, vasal vagal response, a bp of 201/186, etc., I saw all the specialists. My PCP was thorough, but I wasn’t quite sure what she was up to, so as further tests came back “normal” I was starting to feel like a hypochondriac. Then she found that I had a B12 deficiency. The first neurologist, on a follow up visit, argued with me over whether or not I had a B12 deficiency. I had been asking him how long I could expect for improvement on the replacement therapy. I told him about other symptoms – all classical signs of fibromyalgia. While deflecting a question about the cyst, he told me that a better question would be what were my parents doing in 1959 (when I was born). He also told me that since I didn’t have cancer or a stroke, I should go home, do some neck rolls and be happy. He also told me we didn’t really need to follow the cyst.
After a huge battle to change neurologists, I was sent to a neurosurgeon, who informed me that the imaging protocol for the cyst was 6 months after the first MRI, and annually thereafter! But, he questioned my pain. And all this in 2 minutes!
After a physiatrist found no physical reason for my pain, I was sent to neurologist number 3 for hyperreflexia (as in when they tap your ankle with the mallet your neck isn’t supposed to jump). He gave me a thorough exam, and ruled out MS.
A week later, my PCP gently suggested that I had fibromyalgia. Since she had mentioned Lyrica the appt. before then, I had been online, and one of the questions I had written down to ask her was if I could possibly have fibromyalgia.
I wish I could have the guts to use your imagined response, Adrienne. My husband and I had a hearty laugh over it. I have been trying to educate medical people ever since. I was in PT for a year for my neck pain, but since the results were not consistent in any way shape or form, the PTist finally gave up and told me I was done. He make comments many times that made me believe he thought the fibro diagnosis was inaccurate. He was trying to fix the “root” of the problem (my neck), and I can tell you there were times I felt like a failure, because I wasn’t getting my neck, arm and hand pain cured. (I was diagnosed with Carpal Tunnel Syndrome through a nerve conduction study and EMG recently – of course my hands weren’t getting better in PT: we were treating the wrong thing.)
I have finally found a private practice massage/physical therapist who understands and performs trigger point therapy, myofascial release and good old empathetic listening. He has done more good for me in two visits (so far) than the PTist at my hospital did in one year.
I feel like I’ve got a treatment program that is working fairly well – massage, warm water exercise, neurontin, support group – but am having trouble with students and co-workers who continually touch me. With the students, I tell them that they cannot touch me as their teacher, but regularly one of them will tap me on the shoulder or grab my arm to get my attention. I finally told one young man to imagine that he hurt his arm playing football over the weekend and he had a big bruise covered by his shirt. I asked him if he would be in pain if his friends came up to him all day hitting him on the arm because they didn’t know it hurt him. He agreed with all that, but then replied that he hadn’t hit me hard – just tapped lightly on my shoulder. Sigh.
Colleagues are harder – even one who purports to be sympathetic and has made some effort to become knowledgeable about fibromayalgia (there are at least 3 of us with fibro out of 100 staff members, and 2 others with chronic pain for other reasons), will greet me with a hand rub on the middle back – since I don’t see her coming, it always takes me by surprise, and I practically trip over myself moving forward away from the pain. I don’t want to make a general announcement because I’m the “whiner who asked the nurse to talk about perfume/chemical allergies to the staff”, but one by one is difficult. I would love ideas on how to handle this. No one in my support group is still employed.