How do you get people to understand CFS?

[joesprincess2007]

After years of complaining of fatigue and tests that show nothing (except a B-12 deficiency and the B-12 shots did nothing for my fatigue) my doctor finally said "CFS". The problem is too many people don't believe this is a real disease. Most people just think I'm lazy and have no motivation. The truth is I'm just plain tired all the time. I rarely feel as if I've slept when I get up in the morning. Sometimes if I am hosting a party or family gathering at my home I can spend days cleaning up because I don't have the energy on a daily basis but then after it's over I completely crash and feel totally worn out for several days. Exercise does help some, but I have seriously never gone through one entire day of my life without yawning all day long. I have to plan my day around how much sleep I can get. Anyone else have these problems? And how do you deal with people thinking this is not a real disease?

[PlateletGal]

"I think one of the main problems you face with CFS is that there are no concrete tests to PROVE anything is wrong."

That is changing. If you check out our health pages (located to the upper right hand of your screen), you can read a ton of information. There is actually a spinal fluid test that can apparently diagnose both fibro and CFS (although I should remind everyone that these are two separate conditions). And I hear that there is a blood test and urine test on the way... still in research phase though.

[grendslori]

I think one of the main problems you face with CFS is that there are no concrete tests to PROVE anything is wrong. At least with Fibromyalgia, they already know there are changes in the brain function at times and people do not sleep well, as Linda said above. During sleep, the muscles repair themselves, people with Fibro rarely sleep well so the muscle repair doesn't happen. They also know that the nerves are oversensitive, I think it was due to the spinal fluids or something.....I can't remember exactly how that went, it's written in one of my books. Even with all of the research in this disease, many doctors don't believe this is a problem, they just don't know about it. I don't know if anything has been found to be the problem with CFS, physical findings, I mean. If there have been, I' d appreciate being told. I think people who suffer from CFS should be taken seriously; there are too many people who suffer with this to not be a true problem .  

[joesprincess2007]

I appreciate the support! I wish some of those people had to live in my body for a few days...I always try to explain I want to do all the things that need to be done, I just have no energy to do it. It's hard when you have to sit down to rest after doing a few simple household chores. I like my doctor, but thanks to this lovely economy I am unemployed and currently have no health insurance. Hopefully I should soon. I will certainly ask about the meds you mentioned Linda. Thanks again ladies!

[FurballsMom]

That's the beauty of this website...we can get that shoulder to cry on and that understanding we all need.  I haven't gotten officially diagnosed, but my primary care doctor has come close to saying I have fibromyalgia.  I certainly know the symptoms you're talking about and the frustration you feel when people show such a lack of understanding.  

For friends who show a lack of understanding--if they criticize too much--they get ignored more than the friends who have some level of understanding.  Although, the ones that have some level of understanding still get under my skin at times, so I really appreciate what you're talking about.  As for housework that doesn't always get done--I'll point out that the most critical stuff is done, and that they don't sleep here or live here with it--I do.

[Linda sue]

Well I know exactally how you feel...so I truelly feel for you!! I have had CFS/FS for over 16 years now along with a few other medical problems. No matter how much I sleep or how little...I feel the same.....TIRED. I have already had 2 sleep studies done and a 3rd to be scheduled! The Dr. put me on Nuvegil..to help me stay awake in the daytime ...and after the 3rd day on it....I ended up in the ER ...allergic to it.! I was suppose to start on Savella today ...but now have to wait 2 weeks till all the Nuvigil is out of my system!  I was soooo looking forward to trying the savella as I have read good responce overall to it.
Basically....you have to keep trying...if your Dr. doesnt REALLY listen...then find another Dr...They are NOT God...nor are they perfect....BUT it is YOUR body and YOUR health....so be persistant !! I have toldmy Rhemo for over a year that something was wrong ..as I am alwys so tired and he just put it off to the fibro and CFS...but I finally got upset(sad to half to do that) and told him something else HAD to be checked out. Well as with alot of us ...I have NO REM sleep and barely any stage 4 sleep..even using a CPAP machine...so I would persist on finding out the answer!  
                                 Good luck to you....and heres a HUG..........Linda