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Jen's Story, ME/ Chronic Fatigue Syndrome Sufferer, UK

I have had ME/ Chronic Fatigue Syndrome for under a year. It's like having the flu and running a marathon and having jet lag, but it never goes away after a sleep.

I started feeling really tired in about October 2003, but I just thought I needed some early nights! I started going to bed earlier, but by December I was even more tired. I still thought nothing of it as December is always a busy time...

 

I went on a school trip, late December, and was very ill on the ferry, but seemed to recover the next day (apart from feeling quite drained) and went to London to watch a ballet. Then over Christmas I just kept feeling ill and tired and by January I realised something was wrong.

I saw my GP and he referred me to a stomach specialist (gastroenterologist or something) because I complained of bad stomach aches. Also I had some blood tests and a urine sample. They came back normal.

The stomach guy did loads more blood tests (after a few attemps of poking me with needles they finally got a bit of blood!), and also sent me for a Barium meal and follow through(which was very strange and tasted yukky!) and an ultrasound of my abdomen (the jelly is cold I worn you!). Again, these came back normal.

He did a chest x-ray to check for things like TB, cancers etc: but again normal! It was getting quite frustrating as I knew something wasn't right! And all this time I was missing school, couldn't go out with my friends etc

In April, I was then referred to a paediatricion (children's doctor). She did the whole examination thing and then sent me for an MRI scan of my brain to check for neurological problems such as brain tumours and stuff - quite scary. She also referred me to a dietitian and a psychiatrist.

The brain scan was... you guessed it: normal!

So she decided (with help from the psychiatist) that it must be ME.

She put me on Prozac (an anti-depressant) which is also supposed to help with your sleeping pattern. Both her and the psychiatrist are helping me to pace myself.

A while ago I had more blood tests (they seem to be a regular sort of thing!) and I fainted and my heart rate went really fast! It kept going like that so I had 2 ECGs (electrocardiograms) and both came back normal so goodness knows what's happening there! I have been taken off the Prozac as that may be causing the rapid heart beat.

I now keep getting pains in my chest so I think I may go back to my doctor - although I'm not expecting miracles!

I've started going to school for an hour a day (when I can) and it's pretty tough - esecially as I have GCSEs coming up.

I'm hoping to go into 6th form and study Chemistry, Biology, Physics and Psychology. I want to be a doctor - but I guess it depends if my health will let me! I know see the psychiatrist every 2 weeks and the peadiatricion every month/2 months and my GP whenever I need him!

I dont see the stomach guy any more - but he says I can come straight back if I need to. I also see a surgeon and a dietitian (quite a tally I have there!) I'm pretty drugged up on pain killers, which don't seem to be working as I'm still in a lot of pain and am also awaiting another ultrasound of my abdomen to have a look at a lump (possibly a hernia) which could be causing some of the pain.

I have to say my friends have been great - I'm very lucky as I know a lot of people don't have the same amount of support. I guess I will keep struggling until I reach my goal of going to Med school :)


 

Thank you Jen, for sharing your story with us.

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