Hello,


I am seeing a ME/Chronic fatigue specialist in 5 weeks time to try and finally get this diagnosed, although my regular doctor thinks I have this.
I also suffer from IBS, Asthma and anxiety. I am 32.

I've had possible CFS for a year now, but the problem is no one seems to believe me. At first even my doctor thought I was imagining things, but is now supportive.
I work full time as a scientist but have had 20 weeks off sick in the last year.
My employers don't believe I'm ill and have said if I can't work full time every week they will replace me. I've been back at work 2 weeks after 6 weeks off (including Xmas), I've made a real effort for them and now I've had to take a day off as it's set me back again and I'm exhausted. They even stopped my pay rise because I'm ill.

I am married but even on my husbands wages I can't really afford not to work.

My husband doesn't really believe me, he sometimes thinks I just want to lie around resting, and tells me to try harder and pull myself together. I guess he's frustrated with this too as I never feel like doing much but this doesn't help.

My step-mum says just get out more, do more activities to take your mind off it, or it's all in my mind. I'd love to feel well enough to do more activities! I used to be very active and ride horses alot.

Does anyone else have the feeling that no one believes you or understands what you're going through?

Take care everyone,

Lisa

Hello,


I am seeing a ME/Chronic fatigue specialist in 5 weeks time to try and finally get this diagnosed, although my regular doctor thinks I have this.
I also suffer from IBS, Asthma and anxiety. I am 32.

I've had possible CFS for a year now, but the problem is no one seems to believe me. At first even my doctor thought I was imagining things, but is now supportive.
I work full time as a scientist but have had 20 weeks off sick in the last year.
My employers don't believe I'm ill and have said if I can't work full time every week they will replace me. I've been back at work 2 weeks after 6 weeks off (including Xmas), I've made a real effort for them and now I've had to take a day off as it's set me back again and I'm exhausted. They even stopped my pay rise because I'm ill.

I am married but even on my husbands wages I can't really afford not to work.

My husband doesn't really believe me, he sometimes thinks I just want to lie around resting, and tells me to try harder and pull myself together. I guess he's frustrated with this too as I never feel like doing much but this doesn't help.

My step-mum says just get out more, do more activities to take your mind off it, or it's all in my mind. I'd love to feel well enough to do more activities! I used to be very active and ride horses alot.

Does anyone else have the feeling that no one believes you or understands what you're going through?

Take care everyone,

Lisa
Yes! This, unfortunately, is a common response from those who do not understand this very misunderstood illness. CFIDS patients need to educate their family, friends and co-workers. I would go to the CFIDS Foundation Home page on-line where you will find a lot of information, support groups, literature recommendations, etc.

All the best!

Peregrine

Yes! This, unfortunately, is a common response from those who do not understand this very misunderstood illness. CFIDS patients need to educate their family, friends and co-workers. I would go to the CFIDS Foundation Home page on-line where you will find a lot of information, support groups, literature recommendations, etc.

All the best!

Peregrine

Thanks alot Peregrine :)

I am the same way. I'm lucky though because I don't have to work. I used to work part time, but even missed a lot of work that way. It's really hard for someone who has normal energy to know how we feel. The tiredness, headaches, stomachaches and dizziness. It's like having the flu all the time. No one can understand the problems unless they have them. My husband has a hard time too and gets very discouraged with me. My mom does too. They just say to get up and do something and you won't feel so tired. Wrong! I usually feel more tired especially if I don't pace myself. And, it really scares me when I do have a few good days in a row because it's hard to pace yourself when you feel good. You want to do as much as you can because you know it's all going to come crashing down eventually. I am to the point where I am afraid to feel good because something always happens to ruin it. Like today, I just had about 6 or 7 good days and now I'm down with a bad headache, ibs symptoms, nausea and fuzzy headedness. I don't have any support groups around here so I read these boards. I don't really know if a support group would help because the the support and understanding of my family would mean more than anything. I'm tired of feeling guilty or being made to feel guilty. As for getting out more, it's great when you can do it, but hard when you don't even feel like fixing your own food or even getting out of the chair. I am only 34 and have two little kids who I am afraid will always remember me as not feeling good.

I have had CFS for 10 years. Took about years to get diagnosed. My doctors didn't believe CFS existed. I finally found a good doctor. He diagnosed it QUICKLY. I then found a specialist. You should get to one fast. Also, make sure he or she is good. Check out taking B12 shots and taking COQ10 and other really good vitamins. Also, the NUMBER ONE THING. You have to rest rest rest. I was bedridden most of the time before I was helped. You need to rest or you can't get well. It is hard, but all doctors seem to think exercise helps. It hurts. I have been recovering for three years and I have a life again. I had vertigo, exhaustion 24 hours a day, nausea all day, couldn't sleep etc. I was extremely ill. Good luck to you. My relatives doubted me also. We finally had a little meeting. They also read a book I gave them. It is heartbraking to not be believed.

Thank you so much for your lovely messages of support and for sharing your stories with me. Somehow I feel less alone knowing someone else understands.
I wish you all, the very best of luck with your own problems. It must be even harder going through this and trying to raise children.

I am looking forward to seeing a specialist in a few weeks time, hopefully if it gets properly diagnosed then people may accept it more. My family may accept it more from a definite diagnosis.
I think I will try and educate them more, even if I have to write a letter of how I feel to them. I do have a book on CFS, I've left it around but my husbands not read it yet. I guess it's hard for partners and families too though and I'm sure mine don't mean to be hard on me, they probably think they're helping.

I'm also seriously going to have to think about work. Maybe by dragging myself in full time I'm actually making myself iller. I do love my job but in reality my health is more important.

Anyway thank you all for listening, it means so much to get a few things off my chest instead of bottling them up or trying to get through to people who don't understand.

Take care everyone,

Love,

Lisa

It is hard, but all doctors seem to think exercise helps. It hurts. .

You are absolutely right! A major symptom of CFIDS is exercise intolerance. If you do exercise only do so when you are not in a "flare" and definitely not to the point of exhaustion.

Peregrine

i know exactly what you mean i have been feeling like this for 4 years now and find that people forget or don't realise how you feel.I am able to work but find it hard,and when i get home i'm exhausted so don't feel like socialising i then think people think i'm pathetic.my husband is great but he goes away oalot so i can't always rely on him.
you are lucky that you have cfs specialists in the US as her in england there is no such thing its just a case of grin and bare it and take these antidepressants!

I agree it's terrible having to deal with disbelief...

Aye and you will not be taken seriously if your overweight. So do yourself a favor and lose it, otherwise that will be blame of all your problems as far as doctors and alot people are concerned.