After 12 years of living with, reading about, and trying to understand CFS/FM, hopefully I can shed a glimmer of additional light.
Chronic Fatigue Syndrome and Fibromyalgia are not the same thing. They sometimes (often?) co-occur, as in my case, but there are plenty of people living with one or the other but not both. Speaking at "overview" level, CFS is the fatigue/exhaustion part, which includes plenty of sleeping problems and so forth and so on, while Fibromyalgia is the consistent, persistent joint and muscle pain part.
The thinking of the medical community has changed a number of times about these conditions. There was an initial skepticism that either one was "real" - physicians tended to believe it was psychosomatic or "all in our heads" which drove sufferers crazy (uh, no pun intended haha). Many people were mis-diagnosed as having something else, or just not diagnosed at all. (I had better luck than many, but it was initially diagnosed as allergies for me. Huh?)
For a while it was believed that the Epstein-Barr virus (which is the virus that causes mono) caused CFS and/or FM, hence the term Chronic Epstein Barr Virus (CEBV) was for a while used. This terminology is no longer "in vogue," although when thinking about the causes of CFS and/or FM, Epstein Barr virus is one of many loose ends.
Chronic Fatigue Syndrome remains a "diagnosis by exclusion" - that is, when a patient presents with certain symptoms (exhaustion, fatigue etc), a plethora of tests get run to insure the patient doesn't have leukemia, HIV, anemia, mono, lupus, Lyme disease, etc. When all those come back negative, and symptoms persist for 6 months, the person has CFS.
In Fibromyalgia, there are certain "pressure points" which are UNBELIEVABLY sensitive and painful and this is the easiest way to make an FM diagnosis (usually done by a rheumatologist).
A note about depression. This is a very touchy subject for CFS/FM sufferers because many symptoms of severe depression are similar to those of CFS, and because the medical profession originally dismissed CFS as a psychosomatic disorder, and because many antidepressant medications *at low doses* show some positive effect on CFS/FM. Those of us who have CFS are very quick to point out that this is not somehow "made up" and that we are certainly not lazy and are not just depressed, this is something more drastic. But in my opinion there is probably at least some small link - the question is, which comes first? When I first came down with CFS in college and had to spend vast portions of most days in my bed and missed class and almost flunked out - OF COURSE I was somewhat depressed, who wouldn't be? But depression was a symptom of my CFS, not the cause.
Well so anyway.
OP asked about treatments. Well, I was on a low dose (50 mg, I think) of Zoloft for a while, which helped some for a while (beware sexual side effects like no hard on though! - that sucked!). I have also been on Relafen, which was a great help for a while. I was prescribed a new one called Cymbalta which I would not recommend at all (made me even more sleepy and moody as hell...some might say Bitchy :smile: ).
The best treatment though, as mentioned above, is to take really good care of yourself. Get adequate rest. Don't try to overdo things, but also don't lie around mopey or hopeless or helpless. There will be days that suck. But, make the most of every day and when you are feeling pretty good, resist the urge to do 150% of what you planned because CFS *will* make you pay for it later.
A note about exercise. When a person is initially diagnosed, they may be told some moderate level of exercise is good. And the person thinks, wtf dude, I can't even get out of bed and you want me to EXERCISE? But, it is really true, swear to God, moderate levels of exercise are really wonderful for CFS/FM. And high sugar intake is bad, at least for me (I still do it sometimes, but man do I know I shouldn't have the next day).
I have many more thoughts so drop me a note if interested. Also, this seems to be a popular topic on wikipedia; start here
Chronic fatigue syndrome - Wikipedia, the free encyclopedia
and there are plenty of other links.
In sum - CFS/FM sucks. But, it's usually manageable with some attention. And, though chronic, it's not fatal, so we can count our blessings in that regard.
Hope that helps.
D
Chronic Fatigue Syndrome and Fibromyalgia are not the same thing. They sometimes (often?) co-occur, as in my case, but there are plenty of people living with one or the other but not both. Speaking at "overview" level, CFS is the fatigue/exhaustion part, which includes plenty of sleeping problems and so forth and so on, while Fibromyalgia is the consistent, persistent joint and muscle pain part.
The thinking of the medical community has changed a number of times about these conditions. There was an initial skepticism that either one was "real" - physicians tended to believe it was psychosomatic or "all in our heads" which drove sufferers crazy (uh, no pun intended haha). Many people were mis-diagnosed as having something else, or just not diagnosed at all. (I had better luck than many, but it was initially diagnosed as allergies for me. Huh?)
For a while it was believed that the Epstein-Barr virus (which is the virus that causes mono) caused CFS and/or FM, hence the term Chronic Epstein Barr Virus (CEBV) was for a while used. This terminology is no longer "in vogue," although when thinking about the causes of CFS and/or FM, Epstein Barr virus is one of many loose ends.
Chronic Fatigue Syndrome remains a "diagnosis by exclusion" - that is, when a patient presents with certain symptoms (exhaustion, fatigue etc), a plethora of tests get run to insure the patient doesn't have leukemia, HIV, anemia, mono, lupus, Lyme disease, etc. When all those come back negative, and symptoms persist for 6 months, the person has CFS.
In Fibromyalgia, there are certain "pressure points" which are UNBELIEVABLY sensitive and painful and this is the easiest way to make an FM diagnosis (usually done by a rheumatologist).
A note about depression. This is a very touchy subject for CFS/FM sufferers because many symptoms of severe depression are similar to those of CFS, and because the medical profession originally dismissed CFS as a psychosomatic disorder, and because many antidepressant medications *at low doses* show some positive effect on CFS/FM. Those of us who have CFS are very quick to point out that this is not somehow "made up" and that we are certainly not lazy and are not just depressed, this is something more drastic. But in my opinion there is probably at least some small link - the question is, which comes first? When I first came down with CFS in college and had to spend vast portions of most days in my bed and missed class and almost flunked out - OF COURSE I was somewhat depressed, who wouldn't be? But depression was a symptom of my CFS, not the cause.
Well so anyway.
OP asked about treatments. Well, I was on a low dose (50 mg, I think) of Zoloft for a while, which helped some for a while (beware sexual side effects like no hard on though! - that sucked!). I have also been on Relafen, which was a great help for a while. I was prescribed a new one called Cymbalta which I would not recommend at all (made me even more sleepy and moody as hell...some might say Bitchy :smile: ).
The best treatment though, as mentioned above, is to take really good care of yourself. Get adequate rest. Don't try to overdo things, but also don't lie around mopey or hopeless or helpless. There will be days that suck. But, make the most of every day and when you are feeling pretty good, resist the urge to do 150% of what you planned because CFS *will* make you pay for it later.
A note about exercise. When a person is initially diagnosed, they may be told some moderate level of exercise is good. And the person thinks, wtf dude, I can't even get out of bed and you want me to EXERCISE? But, it is really true, swear to God, moderate levels of exercise are really wonderful for CFS/FM. And high sugar intake is bad, at least for me (I still do it sometimes, but man do I know I shouldn't have the next day).
I have many more thoughts so drop me a note if interested. Also, this seems to be a popular topic on wikipedia; start here
Chronic fatigue syndrome - Wikipedia, the free encyclopedia
and there are plenty of other links.
In sum - CFS/FM sucks. But, it's usually manageable with some attention. And, though chronic, it's not fatal, so we can count our blessings in that regard.
Hope that helps.
D
