Sunday, November 16, 2008

My Fibro

Betting, as mentioned a few weeks ago, is not my strong suit.

Fibromyalgia is a 'disease' like 'hysteria' and 'chronic fatigue syndrome'. It surely exists in the minds of those who have been 'diagnosed' with it and as you can see I am not one of those physicians who buys into the theory held amongst some of my colleagues which goes something like this... "Wow, there sure are some similarities in all of these women (and two men) that we have been seeing with migratory aches and pains which may or may not be associated with various other signs, symptoms, and a desire to be ill."

I am ready to stand corrected by a rheumatologist, researcher, or neurologist who says, "Hey moron, here's the proof! Fibro is caused by viral infection of the muscular sheaths and the virus is "X"", but for the moment I will favor you all with a haiku...

FIBROMYALGIA
MADDENINGLY IT TRANSFERS
YOUR PAIN INTO ME


For those of you wondering about the freaky world of fibro just google 'fibromyalgia support group' and see how many "hello kitty" pictures you see and how badly most of these poor patients really NEED their fibro.

Please send all hate mail elsewhere, after all, for you fibro folks I do have a suggestion. There is a physician with an association with Auburn University AND the military who is quite the authority on fibro. He is definitely on the other side of the coin from me so why not drop by his blog and ask him? With his background in anesthesia he has a regular quiver of arrows ready to fire at your fibro. Best.

45 comments:

  1. Dude, you freaking rock. The last paragraph really makes me smile. :)

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  2. Hi Doc,

    Hope you have your umbrella for the shit storm you've drummed up...miss you like crazy!

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  3. Hahaha...That was great!

    The only thing I enjoy about docs talking college football is the losing doc goes all Patch Adams on your ass. Haikus are the means to a gal's heart. Way to stick it to him 911.

    Now I have to go take a nap because this CFS is kickin my ass!

    But I'm talkin country fried steak. And also because I can only take so much of the cheese-heads handin Orton his ass on a platter. And because I obviously like the word ass too much.

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  4. Oh GREAT...And how is that hemorroid/ED/low sperm count/drooling support group working out for you, 911?

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  5. Nice.

    I had a doctor dx me with fibro once after mashing so hard on my joints that he left bruises. Of course I said ouch. He filled me full of antidipressants becasue he said, "you can't have chronic fatigue/fibro and not be depressed." I was naive (still am) and I did as I was instructed. I became so depressed that all I wanted was a loaded gun to end my misery. Who knew anti-dipressants made you depressed if you didn't need them. I decided finally after several overdose type reactions because he had my dosage too high that he was FOS. I weaned myself off and the sun came out from behind the clouds.

    I curse his name for doing that to me.

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  6. Hmmmm, Amy sounds like he was keeping himself in biz.

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  7. Try googling fibro forums. Very entertaining. I know someone who was "finally" diagnosed with fibro; she said she just hurt all the time regardless of what she was doing, so she quit work and literally didn't do anything(except sponge off of Mom and Dad). So I pointed out that if she hurt all the time, and it didn't matter what she did, why didn't she just keep working, since it didnt' make it worse and maybe it would distract her from the pain? We're not friends anymore, since I "don't understand her condition".

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  8. The post is very funny but as long as there will be Drs to give a diagnosis of fibromyalgia, hypochondriacs will flock to their offices. I know, we have one at work, thankfully not in my Dept., but I have never seen someone supposedly so ill spend so much energy avoiding work. She is on a first name basis with her Dr - well, she calls him by his first name, I'd hate to think what he fantasizes calling her. She is convinced they are friends, I am sure he gets in the fetal position in a closet somewhere when he sees her name on the list of appointments of the day. She goes and sees him at least once every ten days, but I don't feel sorry for the Dr. because he is the one who told her she had fibromyalgia and she took that and ran with it. She actually is getting a lot of mileage out of it.
    Beware what you tell hypochondriacs :-)

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  9. I hate to do this, but can I ask you doctor types for some pretend and not real medical advice?

    My 5 year old daughter was standing on a box and it tipped, she fell and the back of her skull caught on the edge of my desk and then she fell to the floor. It is pretty swollen (the lump is to the side of the occiput, but on base of her skull), she's complaining of it hurting, of course. No confusion, no loss of consciousness, no blood in ears, no differences in pupil size.

    I can put her to bed right?

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  10. I said caught. I should have just slammed into.

    and yes C. That doc was a total pusher. He also ran a methadone clinic somewhere, but I saw him at the university health center.

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  11. bed with one vomit for free. second vomit or speaks russian all of a sudden then go to the er. you do not need to wake her up every three hours. vomiting bad.

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  12. whitecap nurse says:
    Amy- Ice is good too.

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  13. .
    911,

    Now I know why you pretend to speak Russian and be DrX... you fall off your chair while dozing off in front of the TV.

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  14. My new favorite is the Fibro family affairs. Mothers and daughters coming in for their "flare ups."

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  15. 9-11 Yew Da Man!!! Tell you the truth I had more faith in my upcoming O-bama Tax Cut than your Fibro Essay, nothing personal, but I know Georgia Fans...For all the moanin we do about Fibro patients, do you know what the fee is for Trigger Point Injections??!! Thats all I do now,
    War Eagel,

    Frank Drackman

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  16. Marcaine is cheap (lidocaine cheaper), but the hospital and the nation would run out if we had to inject every "trigger point" on these folks.

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  17. Good heavens - I think you just described my neighbor! I wish she'd go to the ED more and bug the crap out of you so she wouldn't call me 10 times a day with her aches and pains list! If she hurts all the time, then if I slap her does that mean she won't feel it????

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  18. Lofty just joined a fibro forum at Pro Health. I don't they are going to like me very much there. My post is titled, "How many of you LOVE your fibro?"

    I am trying to get everyone to start using a the term "Lofty Syndrome" which I coined when I was doing primary care a few years ago. One must all of the following conditions: fibromyalgia, depression, migraine headaches, and irritable bowel syndrome.

    Funny how it's ALL women. I also call it 'Crazy Woman Syndrome'. I hate to say it, but these chicks are a MESS.

    Sadly, I believe many, if not most, have been mentally, physically, and sexually abused.

    I don't wish Lofty Syndrome on my worst of enemies.

    Lofty

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  19. I think we're gonna' get some visitors from a fibro support group.

    The crazies are coming!

    The crazies are coming!

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  20. Fibromyalgia is real. It is caused by associating closely with someone who has been exposed to depleted uranium and was forced to undergo vaccination to anthrax.

    It is all the fault of BusHitler and Darth Chaney. Barack Obama will cure us.

    Peace!

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  21. I see you even include migraine headaches too. Nice...Can you do me a favor and stay away from the prohealth forums. We have enough problems we don't need some jerk doctor coming and making life even worse. And for all you morons making comments about your lazy coworkers, neighbours or loved ones. I hope you get it and then see how you like being treated like a lazy liar. Oh and there are several men on the prohealth site do your research..

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  22. And I would like to add just because you are a dr. does not make you god. You don't know everything and I think that some dr's let their degrees go to their heads. My cousin is a well respected dr. and says that many colleagues all treat their patients like crap. There is nothing called bedside manner anymore. And as for women dealing with dr's is almost as bad as dealing with auto mechanics. You all think we are crazy hormone driven hypocondriacs.

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  23. Noice 911.

    You crazies that are arriving now are so funny. Tee-hee. Back to your self help forums.

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  24. I read an article, probably Discover magazine, years ago that said ppl with depression had a lower pain threshold. Maybe fibro is related to this, or is caused by a low amount of some hormone, perhaps "common-senserone".

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  25. dear anonymous,
    your gently persuasive argument has convinced me that i'm not god and that fibro patients do not fit neatly into any stereotype.

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  26. Thank you dr 911 I truly hope you meant that.

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  27. Hey Anon 2:36,
    Some of us have physical issues and pain that go way beyond your Fibro comprehension. See, I have muscular dystrophy. What that means is pain, weakness, inability to do things that I did a month ago (like button my clothes or unzip my pants to go pee) and muscle spasming 24/7. My outlook for the next 5-10 years sucks. Do I complain about that to my neighbor every friggin time I talk to her? Heck no! Why? Because nobody wants to hear about it! Heck, I don't want to hear about it. I do things to keep me occupied and prevent me from fixating on MYSELF- like trying to help others who are worse off than me. I'm sorry, but after getting summoned to a "disaster of monumental proportions" this weekend by her, which ended up being some of the dumbest crap I've heard, then I've pretty much had it with whiners. Maybe you aren't one of them and if not, then God bless ya! But for those that are - Shut the Heck Up!

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  28. "And I would like to add just because you are a dr. does not make you god."

    And I thank God daily for that, if I were God, I would have to listen to your whiny ass on a daily basis.

    "Oh and there are several men on the prohealth site do your research"

    Let them know that God and I think they are pussies.

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  29. No experience here with fibromyalgia, but my mother was diagnosed with chronic fatigue syndrome back when it was popular. Turned out she had (has, of course) rheumatoid arthritis.

    I tend to think that may of these diagnoses are doctorspeak for "I don't know what the hell your problem is, so I'll slap this handy little label on you & not bother investigating further." Not all doctors do this, of course, but some do.

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  30. For what it's worth, I recall a BBC story a few years ago citing research that the female brain processes pain differently from the male brain:

    http://news.bbc.co.uk/2/hi/health/3244381.stm

    There has to be some biological basis for fibromyalgia. Even if it appears to be "Hysterical Woman Syndrome," you have to ask what neurochemical process in the female brain is making these women feel the way they do.

    Research will unravel this eventually.

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  31. dear dr bobbs,
    undoubtedly you are correct. it seems therefore that we have come full circle in the past forty or fifty years with the more strident feminists claiming that all differences between men and women were cultural or 'nurture' rather than 'nature'. now science tells us that men and women are different. hmm, someone paid money for that research? i could have given them the same results for fifty cents, or they could have simply asked the guy who works at the gas station or the lady who works at the laundromat.

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  32. "Not Bother Investigating Further"!?!?!!? these are the patients that demanded the introduction of MRI scanners because they were getting radiation poisoning from the 80 CTs a year. They actually DO get anaemia from all the Blood Tests they get but won't take Iron or even eat a Steak cause Oprah said it causes Sickle Cell. Ever spent 30 minutes trying to assure someone that a Guiac NEGATIVE Stool is a GOOD Thing?!?!?! Can't wait until the introduction of the Nationalized EMR so we can spot these patients nationwide. So we can better meet their needs, you know how those blood pressure cuffs can trigger an attack.

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  33. I am not whiny in anyway. I actually try to avoid telling any other dr then my GP that I have fibro or cfs. And everyday I wish that they would just go away. And if this is just "hysterical woman syndrome" then there are plenty of women that have the wrong gender. I was also diagnosed at the age of 16. And I was not hysterical and hated the idea of being sick. And I don't listen to or watch Oprah either. I honestly hope you are someone close to you gets diagnosed. Then I would love to see your attitude then.

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  34. Dear anon,
    Not to start anything, but seeing that 911Doc is a REAL doctor, couldn't he just un-diagnose that person close to him? Problem solved.

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  35. I've no such diagnosis, my own personal experience is that every person (read:woman) I've ever known who claimed a FM diagnosis was bat-shiat crazy, but then anecdote does not equal data.

    With all that said, I've had some interesting experiences in the last dozen-plus months. I got so screwed up I could hardly get out of bed. Weak, tired, depressed... Working muscles in my leg daily, plus 3x/week PT but getting nowhere. Triglycerides off the scale, so high they invalidated the cholesterol test... I was a MESS.

    On the suggestion of a friend, I had my testosterone tested. Normal is 250-1100 (on this test) mine was 54. A couple of weeks of supplementation and I'm already feeling better. A few more weeks, and a higher dosage (started with lowest possible knowing it will have to be increased) and I have no doubt I'll be back to normal.

    Whether there's a discernable cause or not, my heart goes out to anyone feeling the way I did. I'd honestly have offed myself if I didn't know how it would harm my kids.

    Finding out there was a single, simple cause for all my problems was both miraculous and maddening - how could my Docs not notice this, especially since it's a known 90+% side-effect of the meds I have been on for years??

    My point is this: I despise malingerers with every fiber of my being. I kept going through all of this, still upholding my responsibilities while literally feeling I was going to just keel over and die one day.

    I also know what it's like to feel this way and Docs unable to explain or fix it.

    I was blessed to have a friend with the same issue, otherwise I'd still be suffering or would have finally collapsed.

    I can't help but wonder if some of the *-eurs don't have a similar, unfound problem...

    DD

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  36. I think the "neurochemical process" that causes "hysterical woman syndrome" is simply caused by men.

    But I'm not a doctor or anything.

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  37. Ooooh! Fibro Haiku!

    My Fibro was cured
    by beer and ibuprofen.
    Never mind. It's back.


    Or

    How much Dilaudid
    does it actually take
    to make you get lost?

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  38. I think Lofty's Fibro post has been deleted from ProHealth. Boo, hiss. After checking out the forum over there I realized that I've been completely exhausted for the past two days and my joints and muscles are causing me unbearable pain. Just when I was thinking about filing for disability I remembered that I ran a marathon on Sunday. Think I can find a doc to diagnose me with fibro and give me some good meds anyway? Woo-hoo!

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  39. My sister was diagnosed with fibro. The two semesters before her diagnosis she really struggled. Her brain did not function properly (from fibro fog we now know) and she was tired all the time (but not anemic), along with her pain. She was diagnosed this summer and put on Lyrica. She has improved drastically. She is taking 18 hours of classes this semester and has kept up with all of them. She is studying engineering, and 18 hours of that stuff is no easy feat. I do believe a lot of people who claim to have fibro may be using it to get drugs and get out of working, but this is not the case with everyone. If I had not seen the change in my sister myself I wouldn't believe it either. My point is that just because 90% of people may be lying or attention seeking, don't discount everyone with a fibro claim.

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  40. First of all, glad you are better.

    Secondly, I was diagnosed with fibromyalgia at 23. It is something I rarely discuss.. even with my doctor or my husband. I simply live with the pain because I know that the medicines (Ultram, etc.) which will ease this pain are worse than the pain, including one which caused me to have seizures. When the pain gets above my ability to function, a glass of wine and a hot bath usually takes the edge off enough so I can sleep. I haven't been pain free in 15 years now.

    I don't know what causes this. And you will probably dismiss my story. But for me, it's real. It's not something I want or something I need; none of my co-workers know about it, my husband rarely even thinks about it, my doctor never asks about it. It's simply something I live with because the only other choice is to drug myself into a painfree, completely non-functioning state. That isn't much of a choice.

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  41. lisa,
    please understand, none of us are discounting the symptoms that tend to be labelled 'fibro'... something is going on... we just don't believe in the medical diagnosis and feel that the literature will bear us out. you most certainly do not fit the mold of the 'typical' fibro patient, and, to be fair, about the only fibro patients we see in the ER are probably the most difficult ones as they believe, for some reason, that the emergency room is an appropriate place for treatment. it's not. hope you continue to do well and hope you improve.

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  42. 911DOC I am glad to hear you say that (your last post above mine). Because in a way that is what I feel. I would never insult people the way that has been done on this thread, but... I do believe from a scientific stand point that someday they will find out what the real cases of fibro are, and they will have a totally different name. But I think it is wrong to make fun of people (as a whole) with a fibro diagnosis. Because while I realize there are unethical patients AND doctors using this diagnosis, there are people with very real issues that need help and right now the medical community can't really help them much. Because (in my opinion) they basically don't really know what fibro is. For me personally, my name is Debbie, I am 31 years old. Up until the age of 19 I was healthy, athletic, and quite the work-a-holic. Then I was hit by an elderly driver and I haven't had a single day pain free since. I had lots of injuries. But my biggest issues were my back and my neck. I was diagnosed with severe disk degeneration (I lost an inch and a half of height in the first year after the accident.) My ability to concentrate was shot, and my coordination was so bad that I had to practice writing, throwing a ball, etc. I was never depressed or fatiged. I won't get into all the long drawn out details but I listened to NO ONE that told me I could no longer work. I forced myself to work for over a year after the accident, until the pain and the total lack of sleep just became too much to bare. I am not a wimp when it comes to pain - at all. I've had my ankle/leg surgically reconstructed, and broken several bones and took nothing more than Advil. I've given birth to 2 children with no drugs. I didn't even take drugs after my c-section. I did take Advil. I learned early on that the medical community had little to offer me. And I handle 99% of my health on my own. I once had a new general practitoner (because my old one retired) for over 4 years and never even told him of my FM diagnosis. And he never got my records from my old doctor. When I finally did tell him because I wanted a *small* precription for Soma he literally laughed at the idea of FM and treated me like I was a drug seeker. I haven't been back. And I haven't had a general practioner since. I only see my OB/GYN occasionally and my ashtma doctor. The *only* reason that I asked for Soma is because it is the only muscle relaxer that ever worked even a little for me and the prescription bottle that I had (that was at least 8 years old) was now empty. Soma is hard on my stomach so I would only take 1/2 of a pill and only on the rarest of occasions, that is why my script lasted so long. His reaction was so unfair. He lectured me on how addictive Soma supposedly is and how he could not prescribe me that, and offered me nothing else. I felt like I was treated like a drug seeker. Which could not have been more unfair. If I was a drug seeker wouldn't I have asked for something, anything, during all the 4 + years he had been my doctor? And I have records of what my spine looks like, I have proof of my injuries. But because I didn't "stay in the system" as I call it, and stay pumped full of all the drugs doctors tried to push on me, now I apparently will be treated like a drug seeker if I ask for my first prescription in 8 years! I am still not able to work outside the home but I have found ways to accomplish most of the things I need to do around the house, with lots of modification and some assistance. I *cannot stand* the FM support boards, etc. Don't get me wrong I am not advocating that they be taken down or anything, I believe in the right to free speech. But I personally cannot stand those boards. I am a *very* positive person and I just think those boards are horribly depressing. I realize that some people say they get something out of it, and to that I say "to each his own". For me the accident was the beginning of a spiraling of health issues. I developed Hashimoto's thyroidits (verified by blood tests and scan), severe allergies and asthma (verified by skin testing and lung function test), and what was just a very mild "family stomach issue" turned into full blown IBS so bad that I lost 90 pounds in 4 1/2 months. Until I finally figured out what foods I could no longer eat and what mild foods I could tolerate. Doctors want to prescribe this and that and everything but NONE of them want to look at the big picture. I am *certain* this is all somehow related. I do not believe it is just "chance" that caused all of these things to happen at the same time - all immediately following the accident. I hate going to doctors, I hate talking about FM, and the only thing that I take meds for is my asthma because I cannot breathe without it. But please understand that there are people out there that do have something legitamitly wrong with them and that some of the things said in these postings are really unnecessary because they are quite hurtful to people who fight every single day to do as much as they possibly can. And while I would *never* wish my condition on anyone, I do wish they could walk one week in my shoes. Just one week.

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  43. Old Fart, it's been good to know you, albeit briefly. Continued good luck with your healing.

    Cordially,

    Ellen Kimball

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  44. Fibro was a handy and convenient catch-all diagnosis for my vague symptoms in the early manifestations of my disorder...Stiff Person Syndrome. Thankfully, one doc questioned the diagnosis and honestly gave me validation by acknowledgment of my symptoms and saying, "I don't know what your problem is." His recommendation to send me to a knowledgeable neurologist, most likely, saved my life. As a chronically-ill person with a disabling condition, (I hate the labels!), I have little patience with patient self-victimization, (see too much of it.), but also abhor condescension or "its in your head" judgments from physicians who do not understand an "unknown." SPS is a serious neurological disorder that can distort perceptions/emotions with violent physical reactions of severe episodes of full-body spasm. The incidence is roughly estimated as 1 in 1 million. Psychiatric misdiagnosis frequently delays the correct diagnosis allowing progression of the disorder increasing an afflicted individual's anxiety, isolation, and depression, exacerbating the physical symptoms. I have been evaluated by some of the nation's top neurological heavy-hitters and a participant in NIH research. I am not a self-pitying finger-pointer. I try to enlighten about SPS one small piece at a time. I love this blog and hope that those who read it learn a little about the syndrome. Many are treated in ER during an episode. If my comment helps in one situation, it was worth my time. I have a personal website with peer-reviewed article links, along with my personal experiences with SPS. Stiff Person (Stiff Man) Syndrome. http://www.stiffman.org
    May God bless your continued efforts. I appreciate the difficult situations and people you encounter. Thank you for listening. Debbie

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