The doctor who said, " I don't believe in Fibromyalgia" yesterday!

By bzmomkfor Tuesday, February 26, 2008

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I'd been referred to a pulmonologist for possible sleep apnea. While I realize he makes his living off of people who cannot breathe I was a bit surprised at his rude lack of understanding of my other medical conditions, especially since it was the doctor treating those conditions whom referred me to this guy. Now we all know I can't remember things well so I know this is not an exact quote but without a tape recorder it is dang close: He seemed to chastise me for being on so many medications & having so many different diagnosis. He then got after me about "why do you have such low iron levels?" Well how would I know- I can't afford to eat steak & spinach every night what can I say. He then went on to thoroughly try to pry out of me information about my menstrual cycle, as to whether it was heavy - as a possible reason for low iron. He then set everything aside, pulled his stool closer to me & said, "I would never let anyone diagnose me with fibromyalgia! You show me someone with fibromyalgia & I'll show you someone with sleep apnea" He said from my other information & exam it looked as though I may have mild to moderate sleep apnea. I'll be scheduled for a test & possibly a nap test the following day as well as soon as possible. They will call me to let me know when that is. He did give me nasal spray & a prescription for it since my nose is always either runny or stuffy. So I guess this way he gets to bill me for an office visit in addition to this stupid sleep study thing which out of pocket is like $1,300.00 Yeah, no problem there doc. I thought he was offensive but maybe that's just me, what is your opinion? I mean, how can he refute an illness which is just now gaining acceptance after 15 or more years?! GRRRR.

Thank you All For Your Support After My Ordeal With Dr. Snotty Pants

Comments (25) | Add comment

2/26/08 9:39pm

Hi Hon,

I hope you are dong well....I know its been awhile. I am so sorry you had to go through that. Well, my opinion, hmm. I think he sounds like a salesman, like so many do, to get you firmly believing that his way (sleep issues) is you main and perhaps your only problem and you guessed it...he can cure ALL! I do not believe he has any training or schooling in that field so you really can't take what he says about Fibromyalgia seriously. Even you know it is only really being accepted now as a true issue for ALOT of people. There are so many Dr.'s out there that are so subborn, to even think of it any more than just a "catch all diagnosis" is asking alot from them. I used quotes because I actually had a doctor say that to me...ggrrr.

Good luck with your nap time Big Smile

Terry

2/27/08 1:40pm

Sorry you have to go through this like so many before you...so know you are not alone. I think pulmonary specialist, in fact most non-pain oriented doctors, still see Fibro as a make believe disease. However, every doctor wants to be able to heal their patient so if they can make the symptoms fall into their area of expertise so much the better. And since we all know sleep is a HUGE factor in our pain levels the sleep apnea label is an easy trap to get caught in. However, I'd be very careful of any doctor who says "Mild to moderate sleep apnea" and then gives you things for a stuffy nose. A number of years back my husband and I both were disgnosed with sleep apnea. His was quite severe, ( he stopped breathing 135 times during the time period of the test!). Now I could have told the doctor this as I'd been trying to sleep next to this "tractor noise" for quite a few years and had become increasingly alarmed at the moments of silence followed by gurgling and choking sounds. In fact it was my testimony that convinced his PCP to make the referral to the specialist and got us full appproval very fast for all the tests and the CPAP equipment...for once an HMO came through. He now sleeps like the proverbial baby and we even take the CPAP when we travel he's so dependent upon it. He gets a full 8 hours and is sound asleep second after his head hits the pillow, (no more "pillow" talk, I'm afraid...I just end up talking to the whish of the CPAP....at least it doesn't talk back. HA!) However, my experience did not turn out so well. My "mild to moderate" sleep apnea was "supposedly" the cause of my Fibro pain, so the CPAP was approved , but I'm severely claustrophobic and have never been able to adapt to the head gear necessary to make it work...believe me I TRIED, because I'll do anyhting to help with the pain but all it did was cause more anxiety and mess up my sleep even more. However, quite by chance, my PCP came up with a nasal spray that works on my "stuffy nose" better than anything else ever has (Astelin) and then 2 years ago we had to replace the mattress in our spare bedroom and bought one of the air filled ones that you can adjust to your own comfort level, (a bit pricey but cheaper than that sleep study!) and I discovered that my sleep environment is the most important factor in my total number of sleep hours, (4-5 jnstead of 2). Since hubby is asleep in 2 seconds anyway, (he's now wide awake at breakfast so we can actually talk then) , I now sleep in the other bedroom and have created my own little "nest" which is so soft no one in the family can understand how I can sleep on it, but when I sink into my cloud of soft pillows and comforters, (Fluffy is the key word here) I can feel my pain level begin to plummet! So, I'm not saying apnea isn't a factor for some of us...it certainly is for my husband and I honestly think the same specialist who dismissed my Fibro actually saved my husband's life, (and he MAKES him come in once a year for regular check ups...which is a major feat right there....something about those "Y" chomosomes just hates to make drs appts!), but your sleep environment is vital for all chronic pain folks and putting your money where you need to spend 6-8 hours of your day seems to make common sense when it comes to "home decor." If proping yourself up on lots of soft pillows and using a nasal spray for your stuffy nose suddenly helps you get more sleep you might want to spend some time in the bedding department of your local mall. Good luck and try not to let the specialist push you around too much....We know our bodies better than they do usually. Hope everything works out for you...the sleep study is an interesting experience, at least. Laughter is the best medicine, Terry

donal1951

2/29/08 12:38pm

I'm not sure if my PCP, a general internist, believes in FMS or not. What I do know is that he treats me symptomatically very capably, is sympathetic, and in no way doubts that my pain, fatigue and fibro fog are real.

To me, that's what's important. I could care less if he believes in a specific label so long as I am getting the care I need. He is more than a doctor. He is a friend.

Jeannie Stauffer

2/29/08 1:49pm

Hi,

I also have fibromyalgia. I have been diagnosed for over 10 years. I hate hearing stories like yours because these days I can't believe there are still doctors who "don't believe". I just went to a pain clinic last month. They told me they have many patients who are diagnosed with fibromyalgia, even though later he told me that it is only a diagnosis of exclusion not a real medical condition. It just drives me crazy that I still have to deal with people like that. I hope you didn't let it get to you, as hard as it is to not let it get to you. Good Luck!!

Jeannie

petluv

2/29/08 2:05pm

This Dr is a idiot!!! You do not have to have sleep Apnea to have Fibromyalgia. Believe me I know first hand since I have had Fibro since 1987 and do not have sleep apnea. It is true that there appears to be a connection between Fibro and sleep disorders. However, there are many other sleep disorders and for this Dr. to say that ALL people that have Fibro MUST have apena is just plain wrong!!

It is too bad that you cannot see another Dr.

My heart goes out to you!! I too have had some really bad doctors who think that it is all in your head. Of course that is not true.

gracie01

3/ 4/08 8:06pm

I agree. I don't have sleep apnea either. Most doctors try to blame my fibromylagia on depression. I keep telling them I am in depression because of the FMS, not the other way around. I am so fed up with doctors, x-ray techs, and all sorts of medical people saying this isn't real. Somedays, I wish they could get it for just a week. ONE WEEK and they would never doubt it again. But then again, can't get diagnosed unless its what? Three months. Well, maybe they should get it for that long....urgh!!!

GeekyGranny

2/29/08 2:11pm

That dipstick needs to go back to medical school and start reading the AMA articles coming out in droves on FM. It is a neurological condition. Our nervous system is short circuiting on us and it CAN be proven via a fMRI as well as a PET scan. Plus a spinal tap for substance P in our spinal fluid is another indicator because there are usually high amounts in there.

I also have sleep apnea on top of FM as well as osteoarthritis, migraines, and now probably rheumatoid arthritis. But my doc knows the difference.

There are so many tests nowadays for FM that it is indisputable. So DON'T listen to him. He is just another doc who hasn't been doing his studying. And he obviously has an ego the size of the National Monument!!!

Mary aka GG

O Baby 8

2/29/08 2:23pm

I knew I had Bipolar episodes, no doctors I went to in 12 years, would believe me until I had a complete breakdown, told everyone 'where to go and how to get there!' and it almost ruined my new marriage of 6 months! You don't tell off DSHS to screw it and them not listen! I got the help I needed and as long as I am on my medica-tion, I am fine!

Get a a specialist who handles Fibro on a regular basis. If it hasn't been heard of it, move on to another doctor! You need control of this pain and you are 'too young' not to get it! Chronic Pain makes one older than the years they are!

I'm with you Sister!

O Baby 8- tho now a #100+

milkmaid

2/29/08 3:46pm

My rheumatologist is who really declared that I suffer from fibromyalgia. It is a cousin of arthritis.

My neurolgist explained to me he put me on medication for my hands and fingers jerking, that I needed to have a Sleep Study done.

My Otolaryingologyst said I really needed my tonsils out, my palate move up, my tongue moved forward and my top jaw moved forward.

Following the life threatening surgery for severe obstructive sleep apnea, I was diagnosed with Dysautonomia.

First we were trying to determine which came first the fibromyalgia or the sleep apnea because my muscles had to jerk me awake when I stopped breathing while I was sleeping.

My neurologist explained, before he sent me to a cardiologist for a Tilt Table Test to determine if I suffer from Dysautonomia, that patients who suffer from spastic bowel syndroome, fibromyalgia and sleep apnea usually have glitch in the Autonomic Nervous System.

So, the results of the cardiologist set showed that I also suffer from poor circulation in my legs also. The cardiologist diagnosed me with Dysautonomia

My mother suffered from the symptoms that my older sister and I have. We both suffer from Dysautonomia. My mother died at age 60 of pneumonia while they were working to get her blood count up to trat her for cancer.

Her the doctors kept saying that her Dysautonomia symptoms were psychological. An autopsy showed that she had suffered an untreated heart attack in the past, that was not detected by tests in the emergency room.

Jenny Greiner

2/29/08 3:53pm

Boy, no matter how much I hear this it still makes me mad! I agree with the people that said to get a specialist who believes in FM, there are plenty out there.

I would probably go a step beyond this, and gather as much proven medical info there is out there as you can (the FM Network has a lot). Then I would send the info to the doctors office with a letter explaining why you would no longer need his services. If he refuses to treat a patient, based on his antiquated views, this is perhaps approaching medical malpractice. Maybe he will think twice before ever treating another FM patient that way.

I hope you get the treatment and respect you need, and that you feel better soon!

Jenny

Quidnunc

2/29/08 11:35pm

Sounds like a total jerk. Before you commit to all these tests by him, perhaps you should do a little more doctor shopping. Call the referring doctor back and explain the issues and he will find you someone else. I never put up with rude docs (or staff) and spend extra time and sometimes money seeking out compassionate docs. If they are a jerk on visit one, there is no visit two.

I'm sorry you had to go through that. I don't have a problem with him exploring your other conditions, even your menstrual issues, just with the way he did it. In one sense, he is correct. Having sleep apnea can cause a host of other issues, including pain, when your sleep patterns are completely disrupted but I have never heard of it causing fibro symptoms.

Find someone more compassionate!

Helencal

2/29/08 11:48pm

You go to a pulmonolgist and he will diagnose you with a pulmonary problem. If you do have any sleep apnea he's just the guy you want.

Unfortunately by the time some doctors finish a fellowship in a certain specialty areas, they then concentrate on their specialty areas only. That's why one needs to have an internist or family practitiioner to pull everything together.

He may seem unaware of your other problems, but I'd be glad to be seen by such a specialist.

Bruce Organ

3/ 1/08 4:59am

Gie this quak a miss, ad send his bill to lost letter office. Fibromyalgia is as real as aother chronic health condition.

Fellow sufferer

Driag

Australia

mj or malia io

3/ 1/08 10:48am

this guy is stupid, rude, crude , and socially unacceptable.

i've had a doctor do the same thing. i was referred to him for a heart problem and he started in on me about my meds. some how i made it through the examination and left the office....after his nurse called me over and said i should get into drug rehab because of my meds, at the time i worked as a counselor at the drug rehab clinic, HA!

tiffany

8/ 8/08 12:40pm

My lower back hurts all the time and the medicade doctors will not help me because i am only 26 yrs old. they say i shouldn't have back pain and i know that. that is why i went to the doctor. what can i do. i don't have the money to go to a doctor thats not covered by medicade?

Krystle

5/10/10 2:15pm

Hey Tiffany!

I've had back pain for four years now, I am only 24 years old. For the last 4 years I've fought my doctors and cried about the pain. They finally got me an MRI and said I have degenerative disc disease which is what a lot of elderly people have. They sent me to physical therapy, pain management and none of them worked. In order for me to get them to even consider an MRI I had to go in every week with my pain, and it was 3 years of that for them to finally get my MRI. I still have migrating pain, restless leg symptoms, and extreme sensetivity. I of course think it is fibromyalgia but that is just another fight. Good luck Tiff!

mj or malia io

3/ 1/08 10:49am

this guy is stupid, rude, crude , and socially unacceptable.

WELL i left and went directly back to my primary told him what happened and refused to go back to this heart doctor again., for me it was that or i'd have decked the guy and we know that's not allowed.

mare

Lisa

3/ 1/08 8:54pm

Girl, get your sleep study done and review it with the sleep study dr. and get a copy of the results and don't go back to other dr. if the sleep study dr goes over the results with you, which should be follow-up care at no cost, why do you need to see the other idiot dr.

When i had my sleep study done that is how i did it.

There are more patients who have fibromyalgia then there are drs who don't believe in the illness so majority wins!

For anyone out there who is reading this do not let a doctor put you down and belittle you, that is not their job! Don't let the bastards win!

What proof do these drs have that proves that it doesn't exist? there is more medical proof that it does.

You have our support here!

lisa

Anonymous

3/ 1/08 11:56pm

I think most referrals among physicians are based upon professional and/or business relationships. Even when they've had personal doctor-patient experiences w/each other, there is still a professional respect & curtesy among them & their families (unless you get someone like "Dr. House" of TV fame.)

I've had referrals to specialists that I discovered didn't 'fit' or respect me and my experiences or knowledge about my own body & medical history. I didn't think TWICE about not only switching to another doctor but also letting the referring doctor know what happened.

Sometimes having backup medical documentation, test results, etc. are helpful to establish credibility. I believe that I am a key member of my medical management team and I'm my own strongest health care advocate. I've had to be. I always keep copies of my medical records even if I have to pay for them. By law you have a right to a copy of your medical records. (Think "Katrina" & all the personal medical info that people lost. I can't even begin to think of the calamity of trying to explain all of my medical conditions & Rx's.)

It took a decade before I was finally & accurately diagnosed w/fibromyaglia. It's absurd to continue to see a dr who doesn't believe it is even a possibility not just because it is insulting, but they obviously do not have the necessary medical knowledge to take care of me. Perhaps we should have a prepared response for those medical cynics asking them, "Upon what do you base your opinion that differs so much from my own doctor, or rheumatologists, physiatrists (pain mgmt/rehabilitation specialists), etc. If you're not satisfied w/the answer, go to a different doctor. Once I had a doctor tell me that she was diagnosing me with a condition she was taught in med school that didn't exist. We need physicians who are staying abreast of medical advances about all of our ailments & we need to keep networking w/each other to help us develop coping strategies that will ensure that we receive better health care.

paula levasseur

3/ 2/08 2:09pm

I have been either called or insinuated to be lazy, slow, stupid, uncoordinated or many other things since having & being diagnosed with this disease( fibro). One nurse ( an allergy nurse) said I just thought I had it, that really it was just allergies. It is true I have lot of those, but basically I've had this since I was a teen, or so the Rheumatologist said. My guess is they all want to make us believe that we have whatever disease that they specialize in, but I truly believe I have the fibro, otherwise, how could someone have all these symtoms for all these years & not at least some of it is tied together?

bzmomkfor

3/ 2/08 6:22pm

It is true & sad so many of us endure this. I live in a VERY rural area & he is the only pulmonologist around. I am thinking of asking my regular pain doc if I can just get a pm order for oxygen at a low level or something without going through the test. I don't know. But I appreciate all the outpouring of support. Thank you muchly. We do need to be our own advocates & part of the solution not just blindly accept whatever treatment / mistreatment we receive, including personality wise. Amen!

Carole-Anne Stanway

3/ 4/08 6:11pm

I have been saddled with FM for almost 30 years after a severe viral illness. I went to 8 different docs and finally saw a rheumatologist, specialist in arthritis, fibromyalgia and all diseases under the umbrella of arthritis. It took 4 years to get diagnosed and the rheumatologist said I was a classic case, took him only a few minutes to diagnose me. He was well versed in the subject, and well read, and had treated over 200 people with FM at that time (1984).

Any doctor that says he does not believe in fibromyalgia needs to go back to medical school and get re-educated. On top of fibromyalgia, I have now a great deal of osteoarthritis (degenerative) and am fortunate that I have had excellent care and treatment with my doctors where I live. I would answer any questions you may have as have been involved in Fibromyalgia Group and Arthritis Society for many years. It is newsletters like Chronic Pain that are so helpful for people like us so we feel actualized in our disease. It is definitely factual, a disease with a fair amount of knowledge available on. There are two excellent large books on Fibromyalgia - my physician has mine at present, but go to the library or research on computer - everything is there. Good Luck

bzmomkfor

3/10/08 4:29pm

Thank you. I looked up the side effects of ALL the meds I'm on & the more serious but less common ones on about 3 or 4 of them was difficulty breathing. I've not had this problem until around Dec. I think I'm cancelling the sleep study & asking my regular Pain management doc to check into this for me. I don't relish lining the pockets of this "man" who doesn't believe in what I have.

Lotacats

3/15/08 5:25pm

LOL...Fibro is too damned weird NOT to be real.

Last night I went to bed with terrible flu symptoms...naturally I do not have the flu and and woke up without symptoms as expected.

Only fibro can pull that one off. The strange memory fog, the pain on the bottom of feet and other strange things that give it it's unique flavor as a disease.

It's just too strange and when you hear someone spell out the symptoms there's no doubt what it is. Tongue

8/21/10 8:10pm

I know a lady that claims she has fibro. I told her that I was reading some interesting information about how magnesium has been helping patients with fibro. She said. "ohh really, I will have to look into that". Neved did. If I suffered like she said she did, I would have investigated that immediately, and would have bought magnesium that very same day. I think it is safe to say that she does not suffer from fibro. Period!!!

The doctor who said, " I don't believe in Fibromyalgia" yesterday!

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