Can the Fibromyalgia Code Fix Stupid?

Can the Fibromyalgia Code Fix Stupid?

Editor’s Note: Rosemary Lee is a writer who lives in Las Vegas and suffers from fibromyalgia. She writes for the National Pain Report. To see more of her work visit her blog (here).

Yesterday,

I was so excited!

Finally!

We could have an accurate diagnosis.

Then I thought about it.

I’ve gone to doctors that absolutely refused to write about Fibromyalgia in my charts. He looked right at me and said, “well, I’m not writing THAT down.” I’ve been to doctors that have given me the “oh-suck-it-up” look and shrugged their shoulders. I went to a dermatologist because the skin was peeling off my fingers and, I kid you not, he walked out of the room and looked back at me and said, “you know, you do live in the desert.”

Will one little code fix that kind of attitude?

You just can’t fix stupid.

Rosemary Lee

Rosemary Lee

Health care has gone beyond terrible. Those who belittle and dismiss your symptoms as, “all in your head.” The ones that tell you Fibromyalgia isn’t real and they certainly won’t write that down in your chart.  The ones that have you crying when you leave the office. They are also the physicians that have you doubting yourself and you start thinking about what you did to deserve this or, worse, what you did to yourself that brought this on. Then there are the doctors and clinics that will take thousands from you, knowing there is no cure, give you false hope and when things don’t work tell you that you’re on the right track.

Will a simple code fix all this?

Then, there’s the other end of the spectrum. I’ve almost become embarrassed to say the word Fibromyalgia. People look at you like it’s the garbage can diagnosis that some doctors have made it out to be. If they can’t tell what’s wrong with you….well then……it must be Fibromyalgia. It may very well be just that……but it’s the look that goes along with it that gets to you. It’s the look of disdain or the just plain patronizing that gets to me. It’s the almost pitying look that says, “well…..if you believe it…..”  I’m really tired of doctors pulling that.

Let me get this straight. There is a code for being sucked into a jet engine (V97.33). There is a code for other contact with a pig (W55.49X??????). There is a code for being struck by a turkey (W61.62X). It took this long to get a code for Fibromyalgia??????

So, back to the question.

Will the code fix it?

I’m not sure.

Whether they like it or not, Fibromyalgia is real and recognized. I just don’t think that years of thinking that it’s a problem of neurotic, middle aged women will go away quickly. There will always be doctors that are more interested in getting you out of the office than finding out what’s really wrong. Having said that…….

I’m convinced that my dog gets better care than I do.

The vet comes in the room and bends down and pets him.

Calls him by his name and lets him know that she cares.

At that point my dogs tail is wagging a mile a minute.

If there’s medication she explains how to use it and what it’s for.

She really wants to get to the bottom of the problem.

Plus, she wants to know in a FEW DAYS if the medication is working.

AND,

SHE REALLY LOVE PETS.

Maybe I should go to a veterinarian.

My dog doesn’t know how lucky he is.

Authored by: Rosemary Lee

There are 7 comments for this article
  1. shannon at 4:30 pm

    I’m sad. All that is said is “ME” I pray to my higher power everyday! FM is sooooo real. Constant pain and no sleep=depression! Dah…not rocket science to figure this out.

  2. CarenMoore at 9:55 pm

    I have FM & have done tons of online posts research & I found that most everyone I’ve read about that has FM has spinal injuries or spinal dx of some sort. There has got to be a connection. Also have thyroid problems so have autoimmune problems & that is another one that a lot of FM suffers have. I was born with scoliosis but also had a car accident at 17 with neck & back injury’s & then thyroid magically went underactive (chiropractor chart showed me that can happen after a neck injury surprise, surprise!) anyway after that & since then I have had a lot of immune problems & organs not function right & have had them removed & now the latest steatohepatitis which is non alcoholic hepatitis which can also be fatty liver. I was very fit most of my life yet still had liver levels up & down normal to abnormal ever since that car accident but now I am a little over weight & of course the Doc thinks its my weight & hands me a diet that had fattier food on it than I would ever dream of eating. I have interstitial cystitis now too so bladder doesn’t function right & have had kidney levels up & down & normal & abnormal & stones. I have no gall bladder left, uterus, ovaries, cervix, or pelvis, have had my esophagus stretched, TMJ, fissure surgery, internal hemorrhoids, polyps & on & on. The only thing I don’t need & still have is my appendix LOL! Anyway, I agree that FM is real but I think there’s a bigger picture so to speak but Doc’s would rather blame it on our brain or emotions. I NEVER had depression or anxiety until after dealing with so much constant pain from FM. Living in agony every day not knowing if I can bare it & to get up & even move around from day to day & having such bad memory problems with it makes you feel like your nuts. The pain made me depressed not the other way around. The meds they put you on are a joke, they don’t even take the edge off this kind of pain. Unfortunately I’m afraid no one cares & how can you get help or SSI when you can’t get your doctors to fight for you even when they give you the dx. The dx just labels you hypochondriac even with back & neck dx’s & most your organs gone bad & removed. No one try’s to put it all together. If I could work again I would go back to school & become a doctor to try & figure it out because maybe than someone would listen to me because they sure aren’t listening to the patients. It’s easier to label us than actually figure out the cause of it. I purposely mentioned a number of my dx’s, illnesses, surgeries etc. in case someone else is dealing with some of the same & they will post there dx’s too, than maybe, just maybe a doctor will read through these & a light will go off in discovering a link to it all. Gentle Hugs to my fellow FM suffers.

  3. Brenda Flippen at 4:46 pm

    Well you sure called it right. And the thing about vets, I have said for years that I wish our vet would be my doctor!!
    My doctor will sit and talk to me all day if I don’t complain about my pain . But the minute I say something hurts he is out the door. It is unbelieveable. If I don’t go in all smiles and joking around he doesn’t have the patience for me. And I am,so tired of trying to be miss cheeful. At the docs. I want to go in and set down and just bawl sometimes. But I can’t or he will just walk away.
    Is there a code for that???
    I have had fibro since birth, so the experts think. And in 97 I had mono, again, and Epstein Bar. After that I never got better so was diagnosed with Chronic Fatigue Syndrome. That I can not fight. No pills for that… I also have recurring shingles, ouch ! But there is a code for that.All I know is the medical field needs to get serious about us. Neurontin made me spaced and stop fat, can’t take antidepressants, and I get so tired of asking for better pain meds. So what do we do??? Nothing seems b to work with these doctors. I would like to make a code for them..

  4. Emily Ullrich at 2:39 pm

    Thank you Rosemary! I have multiple “garbage can diagnosis” and am sick of doctors using that term when they refer to the VERY REAL and proven syndromes that I have! I doubt this will change much for those doctors (almost always men) who shrug off our pain. They’ll use the code with disdain, and treat us the same. But, I sincerely hope I’m wrong.

  5. Michael Yovich at 2:15 am

    Maybe recommend your doctor to a vet. They may be able to treat Troglodytes. As for FM, it may be under-reported in males. (The macho thing?)
    Fibromyalgia, Chronic Fatigue and Polymyalgia Rheumatica and similar conditions, are definitely not sexist.

  6. brenda myers at 2:14 pm

    Its funny-I remember several MD’s giving me that same treatment-my first pain specialist said I dont believe in fibromyalgia -but after being my doctor for a long time he finally said I think you really do have fibro-of course I had known for a while I had it, and so the only thing I could do was snicker!! Its a terrible thing to have -everyday you never know what will act up.I know stress does make it exacerbate. I hope this code at least makes them realize it is for real

  7. Sandy Auriene Sullivan at 9:37 am

    I do understand as I was dx’ed first in Australia after nearly dying from a flu at 25 in 96 with CFIDS.
    After the car accident Jan 2000 my body just fell apart BUT the AMA didn’t officially recognize FM in the US. CFIDS? Whaaaaaaat? They barely understood it.

    Only now am I getting the *FULL WORK UP* by a neurologist [mind you I am on disability; cervical c4 stopped bulging it flat out popped so FM is secondary for me.] IF i have FM because…. I am also hyperflexible/hypermobile and we’re learning that too is much like FM. But it’s true if you saw a doc without all the other issues I have and said just Fibromyalgia you’ll get some antidepressants and told to ‘cheer up’ it could be worse.

    My doctor and I talk a lot during injections – about 35-40 min [ok I talk he tells me to shoosh and tries to turn up the radio or did until I said “what other time can we speak?]
    he told me though that *ANY* doctor saying pain is all in a persons head is negligent. And my doctor isn’t known for his sweet bedside manner. He is ethical.

    But let us look at history. Many illnesses that disproportionately affect women? Have been ruled as ‘hysterical women’s diseases’ shoot doctors [pardon this but a doc invented the vibrator during the turn of the century because of hysterical women they felt were served by it! Plus they were doing that manual – could you imagine the lawsuits today for that? I digress] but point still stands. Women and diseases that affect female populations at higher rates puts us in ‘hysterical women’s disease’ category “it’s all in your head’ until it’s not.

    MS? Another hysterical women’s disease! Or labeled as such up until the early 60s.

    Ultimately, what I had to do was fight. Fight and fight more. My body now nearly 16yrs later is progressively getting worse. My doctor never writes FM on my prescription as a reason. It used to say Spondylosis w/myelopathy – which is really generic and amounts to ‘back pain’ and now after I started suffering from paralysis since he’s seen me [4 years] like total lost of left foot [known damage at c4] and telling him “I’ve been told and my SSI paperwork stated I have Radiculopathy.” he said “I’m not so sure” I explained more [ON THE TABLE!! Oh and ya I get relief from the injections too] about radiating pain from head to toes and how it is only on my left [4 years in with this doc. TWICE A MONTH!!] Guess what it says now on my scripts?
    Radiculopathy.

    KEEP FIGHTING. It’s so hard to break through and i nearly gave up on my current doctor many times but he was helping me *some* shoot I had everything checked at one time for low back pain that was NEW. Even had my kidneys checked by ultrasound. GUESS WHAT IS REALLY CAUSING THAT PAIN? Bursitis sac on left thigh-hip region. Masseuse found it, I couldn’t get it to release and now get actual relief from it being injected 2 times a year w/anti inflam and lidocaine. Check the sides of the thighs ladies – low back pain is increased by knotting in that area too.
    Guess where I’m getting injections next? SKULL. Base of skull. Fractured it on…. LEFT SIDE in 1993. I can’t tolerate injections in cervical spine without getting a migraine but hoping for some relief from painful base of skull injections. It’s been sore and swollen there for over 22yrs now.

    Keep fighting. Keep talking. Keep remembering what happened to you over the years that can bring the pain on. Break it down for them. Fibromyalgia is getting easier to detect but so rarely exists in a vacuum. Meaning something ELSE is going on and that kind of leads into FM or FM like symptoms. Keep fighting. I am!