ME/CFS

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Thanks.

My daughter was diagnosed with M.E when she was 15. She's 40 now so we've been living with it for 25 years! More is known about this horrible illness now than back then but still not enough.

It affects sufferers in many different ways so the best advice I can give is for your granddaughter to start keeping a detailed diary. She needs to learn as much as she can about how things affect her. She needs to record as much as she can about how activity, sleep, food, meds etc affect her in order to look for patterns.

Keeping a record of sleep times led to the discovery that my daughter had developed Non-24 Sleep/Wake Syndrome. Instead of a 24 hour day her 'day' was more like 25 hours so her sleep time became about an hour later each day. A friend of mine won a Lumie Bodyclock which she didn't want so sent our way and it was an absolute game changer. It regulated her sleep pattern and gave her a better quality of sleep and she began to feel better. She has become well enough to have just completed her 2nd year of a 3 year counselling degree.

Recording what she ate revealed that while she is fine with beef minced or in burgers it upsets her stomach if she has it in bigger pieces like stews or as a roast.

What works for someone else may not work for her. She needs to know herself and find what suits her.

Thanks Cressida she does stick to foods that don't seem to affect her, she sleeps fine but wakes up tired every day. She isn't on meds as nothing helped her but hopefully the consultant appointment will prove useful.

A friend lent me a book Fighting Fatigue, written by various health professionals. She was diagnosed five years ago, is improving but still has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.
I’m five months on from a series of infections that left me exhausted. My reading is an official diagnosis doesn’t happen till six months have passed.
What used to be a busy day for me is no longer possible. I’m usually active, garden, house, dogs, friends, family. These days I only have one thing a day and still feel exhausted.
The book is useful. Our town has an
ME/CF clinic which my friend found helpful in managing the symptoms

So tough and difficult to think positively - I hope your granddaughter recovers

has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.

This is P.E.M (Post Exertional Malaise) which is the hallmark symbol of M.E. Best avoided since pushing yourself too hard can make you worse.

Cressida

*has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.*

This is P.E.M (Post Exertional Malaise) which is the hallmark symbol of M.E. Best avoided since pushing yourself too hard can make you worse.

I actually have CFS and didn’t have it til the birth of my 4th child when in my forties. It’s not the only fatigue related contrition I have but I 100% agree that pushing yourself on good days is best avoided.

The trouble is on your good days your emotional self says go go go, even though your body might be disagreeing. I know that sounds completely mad, but that’s how it feels to me.

A very good friend’s daughter developed this condition at 15, for 10 years she really struggled and she did do the things suggested, when tired she logged things, she logged all her food. On “good” days she tried to get out in the fresh air and sit in the garden. Her bad days were very dark indeed. She is now in her thirties, with a child. Strangely having a baby appeared to help! (I’m not suggesting this.) haha

It’s quite fortunate these days in diagnosis as back in the day some GPs wouldn’t even recognise it as a condition!

I do wish you and your family the best of luck moving forward. I’d say the biggest thing to watch out for is depression, it’s so easy to quickly start to feel very low about not being able to easily do things you could do previously.

Thanks everyone for the insights and information. I spent time with my Granddaughter today who was very relieved to get a physio confirm what was already a tentative diagnosis. When for 8 mths her GP kept saying try this med for 3months or lets do more tests. In the end she asked her Mum to go with her as she felt the GP was about to fob her off but at least the GP listened when Mum confirmed all my Granddaughter said. Thanks again.

I think the issue with conditions such as CFS and Fibromyalgia is that currently there are no diagnostic tools to diagnose these directly.

It’s a case of ruling out as much as possible.

It took me 10 years to be diagnosed with both of the above, after several blood tests, scans, X-rays, several GP visits, seeing a neurologist and a rheumologist and a physiotherapist. Some of these specialists I paid to see privately.

The diagnosis were a relief, whilst at the same time very frustrating as these two conditions effectively have to be “self managed”.