Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hello everyone!
I have been diagnosed with Chronic Fatigue Syndrome for about the last five years, although it's been building since I was a teenager. Recently some of my doctors have begun suggesting that I may have Fibro instead. Or, according to the neurologist I just saw, Fibro and CFS are really the same thing, so the name is arbitrary. Also according to him, they don't use the trigger points to diagnose Fibro anymore, which is one thing I have never tested positive for.
I have major chronic fatigue, chronic pain (usually localized to my right flank and/or whatever muscle group decides has been worked too hard that day) and the typical brain fog that gets worse the more tired I get.
After years of researching CFS, it feels a bit frustrating to be perhaps starting over with a new diagnosis, or maybe I'm not at all, if they're really the same thing. What do you guys think? Are they the same? And if you do think they are separate diseases, do you have any sites you could recommend for me to brush up my reading on?
Though the CFS/Fibro/whatever has been building for years, it seems like this last year has been the worst yet, in every way, to the point that I'm on partial disability now. (The only reason I'm not on full disability is because I simply can't get by on what it pays.) I'm not sure if this is because of everything getting worse, or just coincidence, but it really seems like I'm losing hair... not in the sense that clumps are falling out, but it's just getting shorter and shorter even though it hasn't been cut in a very long time. I think about a year ago it was shoulder length, and now it's scraping my chin. My hair is curly, so it's a little trickier to judge the length, but I really do think it's getting shorter all on its own. Has anyone had this kind of thing happen??
Thank you all very much for listening, and any advice you can offer! Right now I am feeling just SO SICK of BEING SICK and having to learn about BEING SICK... I'm sure you can all understand!
Sarah
I have been diagnosed with Chronic Fatigue Syndrome for about the last five years, although it's been building since I was a teenager. Recently some of my doctors have begun suggesting that I may have Fibro instead. Or, according to the neurologist I just saw, Fibro and CFS are really the same thing, so the name is arbitrary. Also according to him, they don't use the trigger points to diagnose Fibro anymore, which is one thing I have never tested positive for.
I have major chronic fatigue, chronic pain (usually localized to my right flank and/or whatever muscle group decides has been worked too hard that day) and the typical brain fog that gets worse the more tired I get.
After years of researching CFS, it feels a bit frustrating to be perhaps starting over with a new diagnosis, or maybe I'm not at all, if they're really the same thing. What do you guys think? Are they the same? And if you do think they are separate diseases, do you have any sites you could recommend for me to brush up my reading on?
Though the CFS/Fibro/whatever has been building for years, it seems like this last year has been the worst yet, in every way, to the point that I'm on partial disability now. (The only reason I'm not on full disability is because I simply can't get by on what it pays.) I'm not sure if this is because of everything getting worse, or just coincidence, but it really seems like I'm losing hair... not in the sense that clumps are falling out, but it's just getting shorter and shorter even though it hasn't been cut in a very long time. I think about a year ago it was shoulder length, and now it's scraping my chin. My hair is curly, so it's a little trickier to judge the length, but I really do think it's getting shorter all on its own. Has anyone had this kind of thing happen??
Thank you all very much for listening, and any advice you can offer! Right now I am feeling just SO SICK of BEING SICK and having to learn about BEING SICK... I'm sure you can all understand!
Sarah
I personally believe that those of us with Fibro can also have CFS as well but they can also be separate. Fibromyalgia has a seemingly endless amount of symptoms, CFS being one of them. Not everyone carries the same type of symptoms, intensity or even frequency. That's why Fibro is so difficult to diagnose. I have seen many people who don't have Fibro but they definitely have CFS. They are both tricky issues that's for sure!
I have curly hair as well and I haven't cut it in years. I noticed that I've been shedding a lot of strands throughout the past months, yet the thickness of my hair remains the same. It's strange! I also color treat my hair so that could be part of it. I'm not sure. I can also say that my hair is shorter on some days and other days it can reach my elbows. It depends on the humidity in the air, if I brushed it wet or dry, if it's been braided, pony tailed or kept in a bun. I find that curly hair is very very picky. Stress can definitely make your hair fall out but in terms of breaking off and getting shorter.. you might want to look at your ends. Do you have split ends? Sometimes that is a big culprit to hair getting shorter on its own. Curly hair is especially thirsty, so it's important to use an extra moisturizing shampoo and conditioner. It's also important to condition your hair every day and shampoo it every other day. If you shampoo it every day then you will dry it out and make it brittle real quick. It's also very helpful to use a leave-in conditioner if you don't already use one. Deep conditioners are also very helpful when you have dry and brittle hair.
You will quickly discover that nothing w/ fibro is real black and white, except pain occurring in all 4 quadrants of the body. There are many co-morbidities that are frequently diagnosed in fibro folks, but these are co-morbidities and there will be those w/ fibro who are not faced a given individual particular challenge.
I have had fibro for about 20 years and CF for the last 10 years. Some fibro people do not have CF at all, but many do. Having chronic pain is wearing, exhausting in itself, so some CF w/ fibro may be a consequence of that and sleep disruption due to discomfort.
While fibro seems to be viewed more and more as neurologically mitigated, as opposed to a rheumatology disorder (as was the earlier view), many with fibro have rheumy disorders as well.
Does your neurologist have significant experience in treating fibro patients? His statement that CF and fibro are the same does not ring true w/ me. You may want to be sure you're receiving treatment w/ someone who has a lot of experience in customizing treatments for fibro people with their wide variety of co-morbidities and widely varying reactions to medications. Please understand, I am not casting aspersions on your neuro doc, but fibro is an aliment where there are a lot of varying opinions.
I am sorry you are so tired and achy. I empathize, because that's what I live too.
There is a new criteria for determining Fibro that the American College of Rheumy's put out in 2010 but they haven't updated their site yet I don't think. They don't use tender points anymore, that idea is over 10 yrs old.
I once was so alarmed that I gathered a handful of hair that plastered on the shower wall after a shower and put it in a baggy to show my doctor because I don't think he was getting it when I said I was losing a LOT of hair.
He looked alarmed when I pulled it out but that was over 7 yrs ago and they've found nothing to justify it. I have thick hair and the average person would not notice but I find it everywhere.
In cnada they do blood tests and also do trigger points they send you to a pain specialist . Who does the same trigger points. to me it's just touch me anywhere and I hurt . but some hurt more. I have chronic fatigue they tested me for every ilness first and found out I am anemic too. But I am exhauseted all the time but can't always sleep. Although if I go grocery shopping for 1 hour I sleep for 3 hours it took me three days to catch up on christams eve. My siste rin law informed me we are having a surprised 25th anniversary for my other brother in law/sis in law on the 26th. She wants us too cater . I just said that's fine but I will be buting stufff. I can't try to make things , when I am tired I forget stuff. Like baking powder in baking powder bisicuits woops. So anyway, my daughter also did all the tests , but has not said a thing yet. Accept my liver isn't working good. Gee no wonder after eating 200 avil xxl every month for pain along with morphine. Sorry rambling on, so yes they still do testing.here in Canada. isabee
The best place for up-to-date accurate information on Fibromyalgia is www.fmcpaware.org - the website of the National Fibromyalgia and Chronic Pain Association.
I'm so sorry you need to be here - but if you need to be somewhere because you have fibromyalgia, this is a great place to be. Lots of good information, good support, and good people.
Plus tons of info, helpful to all with fibro.