hi all
Posted , 8 users are following.
I'm posting here because i'm having a really difficult time coming to terms and even accepting my diagnosis of CFS / ME. I'm currently 22 years old and was diagnosed about a year and a half ago.
At first, I didn't feel "satisfied" with this diagnosis. I'm studying to be in a medical profession, and although I know that my symptoms are very real, I wanted something that could be TESTED! That could be proven. Something definitive. My personality has always been like this. I'm very type A, very logical.
However, as time went by I started to accept this diagnosis. Lately, though, I've been feeling as if I'm not "sick enough" to even have this disorder. I've read countless stories of individuals who have so much pain and are so sick that they are disabled and can barely leave their house. In comparison, my symptoms seem so miniscule and incomparible.
My largest symptom is exhaustion. I suppose if you have CFS, you know what I mean. I'm currently taking Concerta and Provigil and these two medications do help me. Instead of sleeping all day, I'm able to go to classes, usually take a nap afterwards, do some work, then go back to sleep. I do have some other symptoms, but they are mostly mild and intermittent (such as sore throat, headache, tender nodes, pain). However, I am not disabled to a point that is is severely crippling. Although it is a struggle, I still am in school and doing relatively well (although that's just about the only thing I do).
I guess what I'm getting at is... do I even have CFS / ME? I feel like I'm not sick enough and am just being a big cry baby. I'd really appreciate your input.
0 likes, 5 replies
lesley_03192 rosemarymae
Posted
My 14 year old daughter was diagnosed with cfs about 5 months ago. We still struggle at times to understand it. Like yourself some days she's OK and manages her normal day and activities. Other days she struggles to walk.
We take each day as it comes and deal with what is going on. We reassure her that as well as the bad days she will have good days and encourage her to continue doing the things she enjoys when she is able.
She meets the condition head on and can even find some humour in it.
She is an inspiration to me.
Continue to get the most out of the good days when you can
Beverley_01 rosemarymae
Posted
Hi rosemarymae,
Not sure if you've heard that there are 3 categories of CFS/me. Mild, medium and severe. If you Google this you can see the differences within the categories.
Hope that helps
Beverley
karin65289 rosemarymae
Posted
Hi Rosemarymae,
CFS effects people in different ways, the symptoms vary from person to person. One of the things that you have in your favor is your age, young people tend to recover more rapidly and may even beat the illness entirely.
It sounds like you have been doing a lot of reading so you've probably discovered that the American Medical Association suggested renaming Chronic Fatigue Syndrome to Systemic exertion intolerance disease (SEID), two years ago.
You may want to check out the diagnostic criteria for SEID. From what I read, researchers think that the new criteria may help them in pinpointing the illness.
Pub Med "The Institute of Medicine has recommended a change in the name and criteria for Chronic Fatigue Syndrome (CFS), renaming the illness Systemic Exertion Intolerance Disease (SEID). The new SEID case definition requires substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise, and either cognitive impairment or orthostatic intolerance.
PURPOSE:
In the current study, samples were generated through several different methods and were used to compare this new case definition to previous case definitions for CFS, Myalgic Encephalomyelitis (ME-ICC), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), as well as a case definition developed through empirical methods."
If you are interested there are numerous articles on this subject. What is in a name?
I wish you well. You are not a cry baby. Who knows,, maybe you will end up studying and working in this area of research.
Karin
I don't think that term is being widely used in Canada, where I live. However, it may more descriptive of the illness and the American Me thinks that it will lead to more definitive diagnoses.
caitlin39841 rosemarymae
Posted
Hi Rosemarymae.
could u e-mail me 'privately' and I can explain how to get definitive ME/CFS/SEID markers. I don't seem to be able to e-mail you privately for some strange (most probably) technical reason.
C
C
Shreddie rosemarymae
Posted
Hi Rosemarymae,
?This was exactly me 10 years ago except I was in my 40's. I finally collapsed in a classroom (I was career changing to teaching and was on placement) Unfortunately I have not managed to recover though I have had some remission. Please don't be discouraged at this - it doesn't happen to everyone. What I did want to say is that it took me a long time to accept that I was very ill with no means of treating it to a cure. My advice to you would be to look at your life to date as a bereavement and consider yourself going through the grieving process. I am not doing so well today so will message again when I can. I hope you can try to accept what you have because if you do then you won't make yourself more ill by trying to power through - it just doesn't work. There are some very good books and articles online which may help you. Like me you need to be in charge but this illness won't let you. I suggest you take charge by trying to find out as much as you can, by being firm with your GP, and by looking at your diet and possible vitamin supplements you could take that may help. I take magnesium, selenium, b12, bcomplex and coQ10. A bit of research makes you feel more in charge. Sorry that's all for now. Good luck and take care of yourself.