Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi all
I have been gradually going downhill for about 2months (since I increased my hours at work) I have now just pulled back to 4 hours per week.
However right now I feel like I did when I first got ill, I was hit with what I thought was the flu.
anyway I am not sure if I am having a bad flare up or a total relapse or I have something else.
I have a stiff neck and pressure behind my ears, chills, loss of appetite (not completely tho) and the normal crap that comes with CFS.
I always assumed that I would get better but I also know from hearing a lot of your stories that I could actually get worse.
So my first six months were so far the worst (apart from today)
I gradually got better with lots of ups and downs
but in the last two months all down hills.
It would be great to hear about other peoples first two years of this illness........
I have been gradually going downhill for about 2months (since I increased my hours at work) I have now just pulled back to 4 hours per week.
However right now I feel like I did when I first got ill, I was hit with what I thought was the flu.
anyway I am not sure if I am having a bad flare up or a total relapse or I have something else.
I have a stiff neck and pressure behind my ears, chills, loss of appetite (not completely tho) and the normal crap that comes with CFS.
I always assumed that I would get better but I also know from hearing a lot of your stories that I could actually get worse.
So my first six months were so far the worst (apart from today)
I gradually got better with lots of ups and downs
but in the last two months all down hills.
It would be great to hear about other peoples first two years of this illness........
Sorry to hear you are feeling awful.
Are you certain you haven't caught a cold or *gulp*
the flu?
My first year was horrible. After three years, I finally got a clue as to how this thing rolls. It comes and goes with me. A good week, then four days in bed. Two more good days, then three days in bed. I had one total remission from this illness last year. For three months, I had an almost normal life! It DOES happen. Then this monster illness came back, with a vengeance.
I think the hardest part of my first year, was quitting work. I had to. I simply could not drive. I could not wake up to an alarm, I had to sleep. My brain fog was hideous. I got on disability ASAP, because my doctor told me that this illness was like this all the time. I would have good days/weeks, then I would crash and have days/weeks in bed. And he was SPOT ON!
I have NOT gotten colds/flus/upper respiratory infections very often since the onset of CFS! May sound weird, but this illness has my immune system so ramped up, I don't catch the usual bugs. Even when everyone around me has them.
I hope this is not a relapse.....back to your worst days, but rather a crash that you will pull out of. As long as you are working, I don't know how you will know if the stress of the job is doing you harm. These are the tough calls we have to make.
We're here for you, Ruby......others will answer this post as well. Remember...we are all speaking from our own personal viewpoint and experiences. There is always hope that your CFS will knock it off and you will be able to continue to work, and pace.....and not have to give up your job.
I wish you the best!
Your having sinus congestion really suggests - to me at any rate - that you have had a cold or perhaps flu. If you've had it a long time it can happen that it turns into a sinus infection, and it makes one feel just horrible. In this case, you will be needing antibiotics.
Please ask your doctor, so this can be ruled in, or out.
Cheers,
And hoping you'll be feeling better soon.
1st two years...that was 21 yrs ago. I was 33 yrs old and didn't have hypothyroid yet so I had a bit more baseline energy.
I went to work full time 7-3:30 in a factory - went home and... crashed. I mean crashed - my then 14 yr old daughter did the housework, shopping (I drove and sat in the car), and cooking. I did some on the weekends but mostly she ran the house. By the time she was 16 my symptoms had eased a bit - I had quit that job and was in school and working at a desk. Much easier. I could usually cook and clean and did the shopping sometimes. It was just her and me in a little 2 bedroom apt so not so hard to clean.
To sum it up I guess I would say the first two years were confusing, scary, and contained a lot of time in denial. Even when I was diagnosed with PVFS, I still thought I was just eating wrong or not getting vitamins or just working too hard. It wasn't until I had a remission that I really understood how sick I had been. Sorry that's all I have for today, still wrung out from yesterday.
Another possibility....ok guys, scoot out for a sec, time for some girl talk.
If this is the week before, during or after your period, that could be the cause. Since cfs...well that can go as usual. But sometimes it causes a crash to the point that I feel like when I used to force myself to work full time with cfs. I've had a number of times where I'm sobbing because I think it's going to be this bad from now on. Then my period starts.
That was the first thing I thought of when I read your post, it just sounded so familiar.
Thanks for everyone's help, advice and kindness.