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Adrienne Dellwo

Poll: Doctors' Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome

By March 4, 2011

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With fibromyalgia and chronic fatigue syndrome, we don't even have the "luxury" of all doctors "believing" in our illnesses or taking us seriously. Sure, many do -- more all the time, in fact -- but we still have far too many doctors and other health-care providers who have ignored the past 2 decades of research and reached the wrong conclusions about these illnesses.

When doctors don't believe, it's a major barrier to treatment, and it may even make us worse; chronic fatigue syndrome researcher Dr. Nancy Klimas has told the media she's seen cases of doctor-caused post-traumatic stress disorder! So much for "do no harm."

I've been fortunate enough to have wonderful doctors who take my fibromyalgia diagnosis seriously and understand that they need to take my symptoms into account when it comes to meds, procedures and recovery times. However, a close family member who was having many symptoms suggestive of fibromyalgia was told, "You may very well have fibromyalgia, but if so you just have to learn to live with it because there's no good treatment." As if that weren't bad enough, I regularly hear horror stories from readers who've been denied treatment, "fired" by their doctors, and openly mocked or berated.

How have your doctors reacted to your diagnosis? Have they been dismissive and abusive, or professional and supportive? Take the poll, and leave your comments below!

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March 4, 2011 at 10:01 am
(1) Rachael says:

Though it has been almost 25 years since I became ill with CFS, I will never forget how my family doctor treated me. He accused me of being an attention seeker, which I found quite ironic because I had always been the type of person who avoided the spotlight; didn’t like going to doctors or hospitals; avoided them if at all possible.

After some time had past, he finally admitted me to the hospital for tests. When my concerned family was out of sight he made a point of telling me, that I was taking up valuable hospital space and that I should get on with my life. I was so scared. I didn’t think you could feel much worse than I already did, but his dismissive attitude towards my illness caused additional stress and made me even sicker.

His attitude and that of other doctors have left a deep impression on me, that will never leave. I started doing my own research and have found things, that have helped me with my own illness. I have avoided doctors completely for the past ten years and I am now my own doctor. I just don’t need to be humiliated by doctors on top of being already very sick.

March 4, 2011 at 2:53 pm
(2) Laura says:

I’ve had Chronic Pain ( Fibromyalgia ) for 20 years & Arthritis in spine since 07. I also have chest and breast pain ( Costoconritis ) which I diagnosed myself. I had Thyroid cancer in 95 & 97 which they said was a cyst by the sound waves it makes, on the ultra sound. I didn’t believe it so I had it removed it was cancer. I’m currently on my own. Would like to know rachael what you are taking.

March 4, 2011 at 1:28 pm
(3) Margaret says:

I have been to my doctor and immediately she took a wide range of blood tests. She intimated Fibromyalgia but she said she wanted to rule out other possibilities.

I am really happy that in a small little town in the middle of a small little island on the outskirts of Europe could even consider Fibro. so I am impressed.

I will await the results and let you know how I progress from here.

March 4, 2011 at 1:30 pm
(4) Bree says:

Like you I’ve been lucky enough to have doctors who have been either supportive or interested. My family physician is the kind of man who is interested in seeing how it plays out and what treatments work/don’t work, etc. Both him and my FM doc work together and keep each other informed; which, as I understand is rare I guess. Also, my Neurologist has joined in on the fun to help out so I’m blessed with the right mix of physicians who want to get to the bottom of FM. In return, I recommend other patients to them for care as I believe they are genuine in their concern.
Ultimately, what I’d like to address in my response here is that I took control of how I reacted to my physicians and my own research. For those who dismissed me and didn’t live by the “do no harm” rule I immediately walked away and searched for someone else…and certainly never received any recommendations for anything EVER. You sow what you reap…and this is true for both patient and doctor. Take responsibility for your care, don’t let their god complex rule your attitude about finding appropriate care :) Stay as positive as you can that we will all find the cure as long as we don’t give up!!

March 4, 2011 at 1:58 pm
(5) PaulaW says:

My primary is the BEST… When I was diagnosed with fibro by nuero after severe migraines… My pcp was regretting that he didn’t think about think about with all the pain symptoms he had treated me for. He had been thinking arthritis and muscle skeletal problems b/c of family history. He admitted that they weren’t taught anything abouth fibro in med school. He took that and and started studying about it. He looked back on my history and realized I prob had it for a long time. He sent me to a rheumatologist that was supposed to be one of the best in the state. I was the first patient of his that he referred to him. This guy was cold, uncaring, and I just had to get mad @ him to makelisten to me! Some specialist!! I will keep my hometown, caring, Christian, praying, admits when he makes a mistake dr. God Bless Him and his whole staff!!

March 4, 2011 at 2:00 pm
(6) Aslaug says:

My endocrinologist (that I see for my hypothyroidism) is the one who suggested I might have fibromyalgia and told me to see a rheumatologist. I ending up seeing two and after a prescription or two (that did little for my symptoms) they both dismissed me with a well-that’s-all-we-can-do-and-now-get-more-exercise attitude.

My thyroid doctor has been better, the last time I saw him he asked about the fibro and when I told him I wasn’t too happy he basically said (what I wished the other two had said): well it’s a complicated disease, treatment is hit-and-miss and really, they don’t know what they’re doing.
Unfortunately this isn’t his speciality so I don’t think I can ask him to try to treat my fibro. As it is, I’m in pain all day everyday, knuckling through work (with plenty of sick days) and collapsing at home.

March 4, 2011 at 4:19 pm
(7) Rachael says:

Hi Laura: CFS and fibromyalgia affects people differently; what works for one might not work for someone else. I take a number of different things everyday. I have done a lot of experimenting in my lifetime and through trial and error, I have found what works best for me, that’s not to say it would work for someone else. Some of the things I take are dietary supplements, over-the-counter pain medications and antihistamines.

I try to give my body things to slow it down a bit and replace what I feel it is depleted in. I always go back to that old saying about CFS, that it’s like ‘running-on-empty’. One thing I do take that would probably benefit most people is salmon oil, which is a natural anti-inflammatory. Omega-3 fatty acids found in salmon oil are not produced by the human body and reduce inflammation. Hope this helps.

March 4, 2011 at 9:34 pm
(8) Terry says:

My PCP dx’ed me in 06 with the FMS. Then sent me to a Rhemy who agreed with my PCP. In the mean time I was going to a pain clinic for the pain in my back which turns out to be some major problems there. From pinched nerves to messed up disks in my low back. My PCP and pain doc was working so well together to get my pain under control that I quit going to the Rhemy. Just extra spent money I was thinking. Which in the long run I was right. I have truely been blessed with caring doctors. Now we have the right medication for me so that every 8 weeks when I see the pain doc he is just as happy as I am that I am still walking. I wasnt supposed to be walking much longer according to a doc that I saw before the pain doc unless I let him operate on my back. That wasnt gonna happen at all. I have seen too many times of the messed up lives with back surgery. I do have to say tho that the rhemy helped me get my disablity. He wrote to them that I couldnt work no more than 15 minutes at a time. Then I had to rest at least 10 to 20 minutes at a time. Which as bad as the job market was back then there was no work in the world that I could do. So like I said I have been blessed with good doctors for this horrible stuff.

I have sent others to my doctor. They were thrilled with him too.

March 5, 2011 at 1:21 am
(9) Anna says:

After multiple doctors that didn’t believe I had Multiple Chemical Sensitivites, CFS and Fibromyalgia, I finally found a fantastic doctor at the Whole Health Medical Clinic in Melbourne. She is a doctor and a naturopath which is great for me to be treated naturally. She found that my problems stemmed from an undiagnosed chronic case of Q-fever. So please everyone I recommend you talk to your doctors about testing for Rickettsial strains of bacteria.

March 5, 2011 at 2:17 pm
(10) banditlady says:

Yes, my former doctor treated me for several years for fibro and then one day he said “I don’t believe there is such a thing as fibromyalgia. I could not believe my ears. Here he had been giving me tylenol 3 for those years he treated me and when I asked if I could go back to the dose I was on, 8 pills per 24hrs. instead of 6, that is when his attitude changed. I thought to myself I do not need this. So I left. I found another doctor and have been with him for a year or so but I am going to request to see a doctor that understands pain, works with people in pain and is sympathetic to the fibro symptoms. I have read article after article online and have responded to many. Tylenol 3 is the only pain medicine that works for me. I have tried many, pain cocktail, various anti depressants, methadone just to mention a few and have found that the t-3′s are the only thing that works without all the side effects. anyway I look forward to any comments or help out there. thanks and have a great day.

March 5, 2011 at 8:07 pm
(11) LuAnn says:

I was diagnosed in 1989 and learned early on to ask a new doctor’s receptionist if the doctor believed in the fibromyalgia diagnosis before making an appointment. If he didn’t believeI did not make an appointment. By not subjecting myself to being treated by someone who would not take my fibromyalgia into consideration I have been very fortunate to have a wonderful health care team. My primary doctor specializes in FMS and is wonderful.

March 6, 2011 at 12:06 pm
(12) momlady says:

While I have never been ridiculed or put down, I have not found local doctors (covered by my insurance) who will partner together and with me to look at my whole medical situation. My physiatrist is a nice woman, not a specialist in FM, not open to trying things unless they are documented in the literature; I have done lots of learning on my own and bringing new research to her. I would love to feel that we partner together for my treatment, but that doesn’t happen. My PCP is very competent, but leaves the FM-related issues to my neurologist and physiatrist. In the end I feel like I am in charge of what managing my treatment, with the oversight of the doctors, and their willingness to write prescriptions for what I need.

March 9, 2011 at 7:19 am
(13) lin says:

I have had FMS for at least 12 years + and have seen every Consultant/Neuro you could possibly see.Currently on 20mg Amytriptaline.
I have found as a general rule that there is not a great deal they can do other than prescribe meds. I have researched myself and have tried all sorts of alternatives and therapies.Including Fish oil which caused unbearable burning in my neck and throat.
It is always very hard to understand pain looking in from the outside.Some people are lucky to never suffer with extreme pain and therefore do not have an idea how dreadful it is.
I had one rheumatolgist tell me to try and run the Marathon.He said he had one patient that did, but then spent 3 weeks in bed recovering.At that point I wanted to slap him on the face and walk out.This is complete ignorance on his part and I advised my GP of his attitude.I recently had numbness and tingling in my head and face for 4 mths along with sever chest wall pain and fatigue like you can’t imagine. But, I have been fortunate to overcome yet another difficult flare with FMS.Indian head massage and daily with my head in warm bath water.I got there in the end.Really do believe that stress is a huge factor in flares.When that subsides so does my pain.Also food intolerances from the Nightshade family and wheat/oat and yeast products. I wish you all well.

September 9, 2011 at 9:51 pm
(14) alice says:

Really? You want us to leave honest comments about doctors? I dont think they would want to hear what I have to say. I have been seeking diagnosis for the last 6 years when I realized what I had. I have been to a neuro, allergist, sleep specialist, ENT, Endocrinologist, GP, 2 pain doctors, 3 different neuro’s, a psychologist, a PT, and finally a rheumatologist. The pain doctors are a joke, if you find a good one you are lucky. The first one i went to wanted to treat me like some crack head off the street. They gave me ER Tramidol for 125.00 and when i had a severe allergic reaction- they gave me ultram. THE SAME MEDICATION. and then I had a panic attack and was in the ER thinking I was having a heart attack because the stupid NP decided she was going to treat me like some drug addict. 2nd pain doctor was great. I had a medial branch block, epidural and 3 cortisone shots- none of which lasted very long and he didnt treat FMS- but he tried to help me. None of the neuro doctors were any help. I was misdiagnosed with many things before I decided i was going to do things my way. I had 4 FMS Specialists turn me down and a quack doctor who wanted 5k up front to “cure” me. I went to a rheumatologist and i wish i could say everything is fine- but things are still not great. she left me high and dry going through massive withdrawls when she took me off vicodin cold turkey after taking it for 2 years in excessive doses because the others didnt know how to fix me. i am now on lyrica and cymbalta and down to 1 or 2 vicodin a day. still in pain, but feel like i can function with some sense of normalcy

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