02-03-2009, 10:27 AM
I'm new here, and I am so glad to see that you have a place for people with Fibromyalgia to vent!
I am 27, and I was diagnosed with FM about two years ago. April 25th is my "anniversary", lol.
I guess I have the standard questions for you all. . . how do you get going? What meds do you take?
I have a hard time with the fatigue part, so I don't get nearly the exercise that I should. Also, winter is BAD for the pain. So anything outdoors is pretty much out.
So, who are all the fibro-folks here?
02-11-2009, 02:18 PM
I'm new here and was diagnosed 4 years ago but tend to be in denial about it. I live by the words 'suck it up princess'. I refuse to be knocked down by the FM. Are you on any meds? I am hoping I can learn more about FM here and talk to others about thier trial and tribulations!
02-11-2009, 04:00 PM
I was in a car accident about 15 years ago (I hydroplaned into a semi). I had no broken bones only severe bruising, and got a very bad staph infection from a tiny little cut on my knee from my knee hitting the dash and/or my car keys. I think that accident was the beginning of my fibro, but I wasn't diagnosed until a few years ago, long after it was impacting on my job performance and ability to do the job. I worked through severe pain for many years (thinking it was arthritis), until that was no longer possible due to the fatigue getting so bad that I was sleeping almost every minute I wasn't at work (and spending more time at work just trying to stay awake than being able to do the job). Over a course of about 5 years I went from working two fairly active jobs about 60 hours a week to barely being able to put in 40 hours at a desk job (retraining in a different field to get the desk job).
I think if I hadn't had such a "suck it up" mentality, I might have gotten a diagnosis and more effective treatment many years sooner, and may not have had to go onto disability at all. As it is, I'm trying to recover enough function to get back to work, and I have made quite a bit of progress, although some days it does seem to be two step forward and one step back.
For me, sleep is the biggest determiner of how I feel. Sleep disturbances are so common to fibro, that some doctors (like my neurologist) consider fibro primarily a sleep disorder. My sleep studies show that I don't enter deep sleep, much if at all, during the night. In studies of animals long-term deprivation of deep sleep results in death, usually due to immunity or autoimmunity diseases (I have an autoimmune disease, suspected to be a vasculitis damaging my respiratory system and skin). The meds that I take to regulate sleep and increase deep sleep (amitryptilene and now cyclobenzaprine) have been the most helpful for the fibro for me (along with my pain medication, tramadol).
It's ironic, but pain medications are not the "first line of defense" for fibro. Often, even narcotic pain medications don't help with the pain (darvocet, did nothing for me). Instead meds that improve sleep quality tend to be more effective.
I take 1000mg folic acid (a B vitamin) to help improve the fibro fog. That helps a lot too.
I also take mirapex for restless leg and periodic limb movement (I thrash around during sleep stages in which most folks don't move at all - another sign that my brain isn't sleeping like the brains of other folks.)
I'm on other meds, but only on the 3 for the fibromyalgia/chronic fatigue, and
I take tylenol occasionally to boost the pain relief on really bad days (an electric blanket also helps on really bad days).
One of the problems with fibro is that the symptoms vary so much from person to person. One person may feel like they're starting to coming down with the flu but still be mostly functional, most of the time (this was me for many years). Or it can range to so severe that patients get absolutely no pain relief even from very strong narcotics such as morphine. Some times the differences causes friction even in fibromyalgia groups because one person will say (condescendingly or even hostilely) "well, I have fibromyalgia and I still make it to work every day, whether I want to or not."
It can be really frustrating trying to learn about fibromyalgia because it can present in so many ways. It isn't a disease, or isn't one disease it's a set of similar symptoms, and it may be that there are not only several causes, but many ways in which it can present and many combination of symptoms. For example IBS is not part of fibromyalgia, but it happens so often in many with fibromyalgia that it's called as "associated" symptom. That might mean that everyone with fibro AND IBS might be different in some way than everyone with fibro that doesn't have IBS.
I was reading recently, that some researchers believe they have found several subclasses (perhaps even causes) of fibromyalgia. Let's see I'm not sure if I remember them all, but one was associated with PTSD (severe physical or mental trauma). Another was associated with immune system problems, and another was associated with exposure to toxic chemicals, another was sleep disorders and I think there was at least one more type.
The more I learn about fibro, the more questions I have (and the more grateful I am that I don't seem to have one of the very worst types).