Chronic fatigue syndrome

KxMx

Yes that's a very good point, CFS diagnosis should only be given after a battery of tests have come back normal. It can take quite a long time but in the meanwhile there has been some brilliant advice in this thread.

JR4

She has had most tests done and this appears to be the only explanation but I think doctors are a bit reluctant to give a definite yes or no as there are no medical tests that can be done but most other things have been ruled out.

littleboo

KxMx wrote: »

I would check out AYME (association of Young People with ME) https://www.ayme.org.uk

+1 for this. Their education adviser was also very helpful and helped us manage our LEA and school better - the LEA were happy to do as little as possible until pushed.

OP - where abouts are you ? GOSH have a very good childrens CFS clinic.

Richard53

JR4 wrote: »

A bit of background info symtoms started on the 7th may


Dizziness
Headaches
Sensitive to noise
Tired ( all the time )
Aching
Trouble sleeping
Loss of appetite

This sounds very similar to my own experience. I started with severe bouts of vertigo while at work (over 3-4 days), then one day had to go home, wife called the doctor, blue-lighted to hospital as they thought it was meningitis. It turned out to be vestibular labyrinthitis, which lasted about 6 weeks. I had all the above symptoms. I was better for about a month, and then crashed with ME. This was at the age of 41. I couldn't walk 100 metres, or read, or watch TV, or sleep properly. I lost my job, and was two years on IB before I was well enough to start part-time work. I am now (19 years later) recovered enough to do a full-time job and lead a fairly normal life, although I have to manage my energy levels constantly.

There's a lot of good advice above, and I can't add to it. I would only say that believing her and being sympathetic is vitally important. My wife was/is very understanding and knew that if I couldn't do something, she would leave me alone to rest. If this had happened during my first marriage (ex-wife was totally focused on her own health issues and had no room or tolerance for anyone else's) I don't think I would have made it through. It was a very dark time.

I wish you all the very best. It may be a long haul.

Mojisola

Richard53 wrote: »

There's a lot of good advice above, and I can't add to it. I would only say that believing her and being sympathetic is vitally important. My wife was/is very understanding and knew that if I couldn't do something, she would leave me alone to rest.

This is extremely important advice - one of the big problems with having an illness that can't be diagnosed with a blood test or a scan or other straightforward medical procedure is that a lot of people will not believe she is ill.

She - and you - will get comments like "I'm sure we'd all like to spend half the day in bed", "We all get tired sometimes", "Don't give in to her all the time - she's just manipulating you" and other many more critical things.

It still sticks in my mind when a parent of one of my son's best friends said "Oh, ME. That's that thing where they just think they're ill but they aren't really." My son was hardly able to get out of bed at all, was crying a lot because of the pain throughout his body and couldn't talk except for short answers to questions because his brain was so addled he couldn't find the words he needed.

pukkamum

Please look at this link aspartame has been linked with chronic fatigue syndrome and many other things, does she drink a lot of sugar free drinks etc?
http://www.foodandhealing.com/articles/article-aspartame.htm

JR4

Thank you all for your help I don't feel so alone now.

Littleboo we are in Essex so can get referred to GOSH if need be.


Richard53 I am glad you are feeling better and thank you for taking the time to write about your experiences.


Mojisola I do find people are not very tolerant she is finding out who her true friends are.


Pukkamum thank you for the website she doesn't have many sugar free drinks she had more milk or water but still very interesting information.

Mojisola

JR4 wrote: »

Mojisola I do find people are not very tolerant she is finding out who her true friends are. .

This is where the forums are such a help. Even children who are best friends will find it hard to keep visiting someone who isn't well, doesn't do anything and so doesn't have any shared experiences any more.

Making friends on the forums can be really important.

Check out whether you have a support group in your area. We made contact with other families through our local group and used to arrange social meet-ups for the youngsters. They really enjoyed getting together with people who understood how they were feeling.

pukkamum

Yes definitely look into the aspartame it's not just in fizzy drinks or squash it's in yoghurts, cooking sauces, crisps, cereal, chewing gum and these are just a few.

Pee

I have a friend with CFS and it's really hard for me to understand because I don't see her that often and I see a witty and intelligent woman who is a single parent doing a great job of bringing up her daughter. (I was a friend of her late husband, before he died.) From the outside it seems that it comes in waves or phases and is sometimes better and sometimes worse, but fairly unpredictable so harder to make plans. She is an amazing woman, and naturally it gets her down sometimes, it's bound to be a bit harder with the usual teenage hormones kicking in. On the other hand I am sure my friend would love an understanding mum - she is in her fifties and has lost both of her parents.