Of course it's a real disease; we've got a drug to prove it!
Great article in the New York Times today about fibromyalgia.
My favorite parts:
"But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them."And
“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”And
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”*giggle*
I don't even have to say anything. It's already been said.
20 comments:
The RagingMother is a fibro-maylgapod too, been through the lortab/percocet/lyrica phase, and she still whines. At least she didn't get hooked on the pain pills. I won't lie and say I didn't get hooked, but after I'm finally finished getting all my teeth ripped out and getting new ones, I'm detoxing with Suboxone and getting off completely. Those were the rules for my getting on them in the first place.
You are so dead once all the fibromyalgeurs find this post. *eye roll* Love your blog!
-lpnmon
I have to say, that since I've lost 143 lbs, and have gotten healthier in my eating and physical activity, as well as continuing with my nutritional and herbal supplements, I only have flares of pain now and then. I only take naproxen for pain (more so for my plantar fasciitis). I have chronic back pain, but it's so much better now. My flares are usually a localized muscle flare up - neck/shoulder areas. Sometimes I need PT to help with it - but it all boils down to exercising and ROM.
No narcs for me. No Lyrica for me. Just a healthier lifestyle, my supplements, exercise and ::gulp:: working fulltime.
My 75-year-old mom dropped about 40 lbs, eats healthy, and doesn't take ANY prescriptions - she also doesn't exercise exactly, but she's a church organist, a music judge, and a piano teacher, so she's always on the go. She hurts, but doesn't let that stop her. I agree with you in one small instance-most of the people claiming to have Fibro are only drug seekers....but maybe that's the difference: They're just claiming it - whereas others actually have it but deal with it intelligently. If it's not a disease, it's still some sort of pain condition the body doesn't seem able to ignore...don't you think?
fibromyalgia=depression, I'm gettin' old and I can't face it.
Don't you miss the good ole days when the only thing that ever was wrong with someone was that they had a headache? Yeah, people probably got sick from all this stuff a long time ago, but they just either suffered in silence or died quietly.
A few good friends of mine have been diagnosed with fibro. Both avoid narcotics like the plague, and both say, as noted above, that exercise, weight loss have helped a lot...along with massage therapy and NSAIDS as needed. Only once have I seen Laura take narcotics for the fibro, and she had been in severe pain for several days trying all her other meds first. The narcs, for her, only killed her feelings of pain for a while, they didn't relieve the pain, so she hated to take them. More power to people like her.
I was told that I had fibro when I was in my 40's. We lived in the country on a horsefarm and I was frequently exposed to crop dusting of 2-4-D Formula40. I never took anything for it, but felt much better on the days I worked at the hospital. (Keeping busy is a great healer) I still have tons of trigger points, so I don't touch them, if I can help it. But, it plays hell with getting to sleep. I'm seventy-two now and it hasn't killed me, but I have to keep active. I would never try Lyrica and with tonight's news I think my hubby should kick the Zetia. Modern pharmacology is a racket!
I had a 350 pounder (5'3" or something) recently with fibromyalgia. Honey, your joints hurt because they weren't built to withstand that much force on such a regular basis.
She was on Fentanyl AND Percocet for said problem in addition to her array of diabetes and htn pills.
Makes me livid that they're comparing fibro to depression. (Well, also kind of ironic since I'm in the "it's psychological" boat.) But still...ugh. So many things wrong with that comparison.
Amen. what a great article that was, thanks for linking it!
I cannot state with confidence that fibromyalgia is or isn't a real disease, but I can state with confidence that my own mother is nothing but a relentless drug-seeker that uses her fibromyalgia diagnosis to her advantage.
Mom, maybe you're tired because you never stop popping narcotics like m&ms? Maybe you're sore because you rarely get up and walk around and you're getting old?
Hmmm.. sorry for the rant. Obviously handing out addictive pills to these people is only making things worse.
Starting now, every time I have aches and pain from working a 15 hour shift or helping to boost a 350lb immobile person, I'm going to call it a "flare." Every time I don't sleep from being stressed out and feel retarded in the morning, I'm going to call it a "fog". I will then call my problem "nurseymyalgia."
Several studies suggest that fibromyalgia may be a disorder of the central nervous system involving errors in the neuro processing of signals from the thalamic tracts. It is certainly a real syndrome. We just don't know the process by which it produces the syndrome. Very frustrating!
The folks who write about staying active have it right. Fibro patients who remain active and employ good sleep hygiene techniques usually do quite well. Narcotics are usually contraindicated because they increase the patient's fatigue, and seldom fully eliminate the pain (at safe doses, anyway) making the side-effects more of a problem than the analgesic benefit. The best treatment is reassurance and the patient's willingness to keep on doing what is important to them.
I think that ER staffs' skepticism about fibro is not based on the science, but on the fact that the ER is the worst place for a patient with fibromyalgia to go. It is not that the staff is not capable. Hardly! It is just that the ER is not set up to handle conditions involving chronic pain of unknown etiology. Moreover, we healthcare types are so driven to do something for patients, that when someone comes in that we just are not in a possition to help, we get our tails twisted into a knot. We just don't handle helplessness well.
Folks with fibro need medical care, and most respond well to proper care. However, they need to get it from a rheumatologists, not the ER staff.
lauren,
My heart and thoughts are with you. I despise taking care of people with whom I have no emotional attachment who are so stupid. I can't imagine what it must be like to have someone I "love" (yes, you must love her--it's a law, she's your mother) be so fucking stupid!
Give her lots of hugs, but it sounds like you are on top of things by not re-enforcing her stupidity! Lucky her to have you and BIG Hugs to you!
RRN
lauren,
I have to add one more thing...you are so right about providers handing out addictive pills to people! I don't know who ever came up with the idea that life should be "pain free"--some liberal lawyer maybe? I'm just guessing. But honestly, these providers are taking an active role in the demise of this country (ok, that may be a little dramatic...) But there are certainly more lazy, drug seeking, whining, useless dirtbags around now than there where in the 1930-50's...just saying...(I don't think fibromyalgia was around back then...)
From a pharmacist's point of view...Lyrica may be the only "approved" treatment for fibromyalgia, but it's sure not first line. Of course, you can't patent exercise. The advertisements make a bunch of noise about how Lyrica is the "first and only approved treatment" for fibro, but it's definitely not best.
It's obvious you don't understand that pain meds don't make the pain of fibromylagia go away. They take the edge off the pain so the patient can function.
It's a disorder of the central nervous system and has the same type of nerve pain as a patient with diabetes or shingles has.
It's pretty sad to see so many ignorant people expressing an opinion about other peoples' pain. Let's hope all of you never get rear ended in a car wreck and end up with an unknown chronic pain problem.
Don't lump us all together, anonymous. I know that we can sound pretty gruff when we are frustrate, and I am sorry if you have been hurt by that, but our gruffness is largely due to frustration, not anymosity towards you. This syndrome is as hard for healthcare providers to understand as it is for patients to endure.
I sympathise with your frusstration. It must be maddening to have something that is so real in your life being treated as unreal by others. There are providers who can help you, but the ER staff cannot. They are good people, they are just not set up to care of people with chronic pain conditions of unknown etiology.
Very best wishes.
Too much money in giving people addictive little expensive pills, not enough in *healing* them.
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