To my Medical Professional Readers: Fibromyalgia question! Fibromyalgiapods beware!

I’ve been reading a lot of medical blogs lately, as always, and I’ve come to wonder something.

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14 thoughts on “To my Medical Professional Readers: Fibromyalgia question! Fibromyalgiapods beware!

  1. It’s not anything I see often, but it’s funny you wrote this because last night I saw it as a discharge diagnosis on a patient’s papers. That was a first. She was in a car wreck.

    No, I’ve never had a man offer a history of fibromyalgia but all together I’ve only seen people claim it a couple of times.

  2. I have a different view about fibromyalgia. I am a nurse, and I feel it usually is a “garbage can” diagnosis usually (well, we can’t find anything wrong with him/her but they are still complaining so let’s tell him/her this one).

    However, I do have 1 friend who actually has this, along with another garbage can diagnosis, Chronic Fatigue Syndrome. We roomed together for a while, and I was amazed at some of the problems she dealt with. However, she never went to the ER and complained, worked every day of her life that she was physically able to,(and there were times she had to rest between making loops while tying her shoes…she had true muscle weakness) and scoffed at the losers who whined and complained. She exercised, swam, used massage and meditation to cope with the pain. Rarely, she would take ad*vil or something like that. I think in all the time I knew her (before she moved away), she took narcotics ONCE, for severe pain…I’d never, prior to that day, seen her crying in pain before and she saw her MD for medication, not the ER.

    You will find men with fibro, but they are few and far between, just like Chronic Fatigue Syndrome and Multi-chemical sensitivity. Most diagnosed are women.

  3. I also have never taken care of or come across a man with fibromyalgia. I also agree with Dawn it is a catch all. When my back got messed up my doctor couldn’t figure out what was wrong & kept trying to go down the fibro. route but I kept pushing for more testing. They finally found a tumour pressing on my spine. As a health care worker who has seen the way my peers treat fibro sufferers I just wouldn’t let him put that out there. Most men will just ignore the pain anyway. They also would probably think it’s a “woman’s” disease so I couldn’t see many men letting a fibro. diagnosis stand.

  4. As someone who has been diagnosed with fibromyalgia, I may be biased. Yes I have known men diagnosed with it.

    I have found the more active I stay, the less pain I feel. BUT my pain is real. Not in my head which some believe. I was also diagnosed after being ill 12 years. I was tested for lupus repeatedly. It runs in my family.

    I do think it can be over diagnosed along with many other illnesses.

    I use Aleve to ease pain and inflammation. I do have a Rx for Flexeril which is a muscle relaxer. I take maybe one 5mg tablet every other month. I also use a heating pad every night.

    There are things which can trigger my symptoms. Some scents like smoking or perfumes, extreme cold, and stress.

    I do manage to work 50 hours a week.

    And remember I only speak for myself. Unless you personally have experienced chronic pain, you cannot know how bad this hurts. Every day.

  5. I met one old lady in rehab who claimed to suffer from fibromyalgia. Evidently she got hooked on prescription drugs due to her condition.

  6. I see tons and tons of people with “fibromyalgia”. Its the single most commonly used excuse for pain pills, soma, and valium. Its also the reason why most of the crackheads get these things. Its the “lower back pain” excuse of the late 2000’s.

  7. First, my story, so no one thinks I’m being insensitive here – I was diagnosed with Fibro back in 05. I’d been having weird health issues for about a year that the doctor could never really figure out, and in Jan 05 I came down with a nasty case of mono. After a year, I was still suffering what seemed to be effects of mono, although my blood tests showed that the virus was no longer active in my system. After ruling out every other possible cause – my doctor thought for sure I either had lupus or lyme disease (as I’d been hiking for a month in northern New Mexico when I came down with the mono) – she gave me a diagnosis of Fibromyalgia. By the time I was given a diagnosis, I was just kind of relieved to be able to put a name with it, as my health had done a 180 over the past 2 years. I went from being extremely active – running 5 miles a day, daily martial arts classes, aerobics and weight training – to essentially unable to get out of bed. Don’t mistake me from what I’m about to say, because I want you to understand that I did – and do – have a very severe case.

    With that being said, I really think that if you *do* have fibro, the best thing you can do is make yourself get up and stay active. Laying around just makes it worse. After my initial “oh God, this is *awful*” period, I forced myself to get out of bed when I’d rather stay there, to go walk every day – even if I could only make it to the end of my block – and be a productive member of society. Yeah you’re gonna be tired. Yeah, you’re gonna hurt. Yeah, there are days you won’t want to get out of bed and you hurt so bad you want to slap anyone who touches you. But you know what….you *have* to. Making myself stay active, along with being very careful diet-wise (like others with FMS I’ve found that a mostly organic whole-food type diet helps keep symptoms away – although I actually kind of stumbled into this on my own before reading that any other folks were doing the same) keeps away the worst of the symptoms. If there’s one thing I *cannot* stand, it’s that damn commercial for Lyrica, where the actress mournfully proclaims “Today, I really struggled with my Fibromyalgia…” You know what? Tough. Get over it. Get out of bed, go for a walk, and eat some fruit. If you lay around and complain about your disease, you’re only going to feel worse.

    Now – with that said – I *do* think that all too often Fibro is a “catch-all” diagnosis. The thing with FMS is that it’s supposed to be a last resort diagnosis, after every other possible cause has been eliminated. Too often, though, people I’ve met who claim to have it were diagnosed on their first visit by a doctor. Most of these folks ran across a FMS checklist and went “Hey, that sounds like me!” – not realizing that many of the symptoms are indicative of poor diet, lack of exercise, and the general American lifestyle. I’ve only met a handful of people who I would say *really* have FMS. When you meet someone who has it, you *know* – and ironically, the ones who really do have it are often the ones fighting against it the hardest – the ones who refuse to stay in bed during flare-ups, the ones who stay active.

    As far as males having it – I’ve met one guy over the past 3 years who had an honest clinical diagnosis of FMS, and I do believe that it was a correct diagnosis. I do think that men probably do get it as often as women – remember, I’ve only ever run across a handful of women who I think *really* have FMS – but men are more likely to fight it, and not admit that there’s something wrong. It’s an old stereotype, but it’s true – we women are way more likely to go to the doctor when they think something is wrong with them, but men tend to just keep on trucking. So yes, I think that there are probably a good sized group of males out there who have FMS, but are not diagnosed because they don’t “give in” to the symptoms.

    Which really, I feel, is probably better after all.

  8. Yes, there are men with FMS. One of my best friends is one, and there used to be a lot of them on alt.med.fibromyalgia, at least years ago.

    To all of you who have decided that this is an excuse: I hope that someday there is a sympathy suit like the pregnancy suits that will let you know what this feels like. Until then, you have no right to judge what is going on in other people’s bodies. You have no right to decide that if I can’t get around much, I’m obviously lazy and a fake, but if I am getting around a lot, it can’t be that bad (this is the double-edged sword of invisible illnesses).

    I have waitressed for long days with this and collapsed crying when I was alone. I’ve dealt without pain medicine because a doctor with the same judgments wouldn’t prescribe anything but Tylenol and had the pain spiral until I barely function at all. I still work on my feet, which keeps me active, and I do water aerobics regularly, walk and do yoga when I’m not too stiff to do more than the breathing exercises. I take Flexeril on the nights when pain keeps me awake; Lyrica helped for a while but stopped, so I weaned off it. My doctor prescribed Ultram again after nearly a year with nothing and with periods bad enough that my co-workers could see that I was in pain and below 100%, which I try not to allow.

    I don’t think admitting that there’s a problem and trying to treat it is the same as “giving in” to the symptoms. Toughing it out for too long wears the body down, and recent research suggests that chronic untreated pain causes long-term brain damage to memory formation and emotional pathways (which may be why some pain patients seem hysterical) by re-forging connections to deal with the “always on” pain stimulus.

  9. Just a reminder that you can have “real” pain and “real” nausea that is merely psychosomatic. Fibromyalgia has no tests to confirm nor deny its existence, so it’s going to end up a garbage diagnosis no matter if it’s “real” or not. Many, many people have non-specific aches and pains.

  10. Supposedly men can have it, because I have been harassed by members of a men’s fibromyalgia support group after one of my fibro posts.

    I’ve never actually seen one, though.

  11. NurseK: it’s a real disorder with specific diagnostic criteria. A blood test is not the beginning or end of diagnosis. Those meeting the diagnostic criteria show similar responses and similar altered brain scans.

    I’ve been dealing with this since before it became well-known–the answers were “what is that?” not “my cousin’s sister-in-law has that, isn’t it painful?” And gods know that if some placebo would work, I’d be for it, but Lyrica is supposed to be a wonder drug for FMS, and it helped me (maybe a 25% reduction in average daily pain) for over a year then stopped working for me. Telling patients the pain is psychosomatic solves nothing. The fact that there is not a specific blood abnormality or that a blood abnormality the doctor doesn’t know how to deal with is discarded does not automatically mean that pain is psychosomatic. In other words, you not being able to see something doesn’t mean that it’s not there.

  12. Yawn. Almost if not all the patients I see with fibro, have anxiety/depression and, perhaps, something like borderline personality and/or other diagnoses that are “unexplained” by massive multi-resource work-ups. Some are known drug seekers. If you were me, you’d be skeptical that it had a yet-identified physical cause. As far as I’ve read, the “diagnostic criteria” is pain in 11 of 18 arbitrarily-defined places. I have at least 2 or 3 patients Qnightly who have pain wherever I ask them if I have pain. That’s not a terribly unusual finding.

  13. That is a great question- btw, LOVE your blog! Read it all of the time.
    I have 2 friends who have been diagnosed with fibromyalgia- one works full-time, works as a realtor part-time and is constantly on the go, although she is overweight. The woman never stops.
    The other one is constantly taking pills, blaming everything in her life on fibromyalgia and sleeping for days at a time. She used to be a vibrant and social person. She has now become a real Negative Nancy who is always depressed and I can’t stand to be around her anymore.
    I also have a step-mother with the sketchy Chronic Fatigue Syndrome. She is a pill-popper and uses this faux disease as an excuse for everything!!
    My body has strange aches and pains daily but I attribute it to pushing 50 and having a sedentary job. I try to walk at least a mile nightly to keep everything loose.
    I think that the 2 afore-mentioned diseases are an excuse for a lot of folks to be lazy, take pills and otherwise not participate in the reindeer games. It’s a shame.

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