Unfortunately my brother has been diagnosed with CFS he’s been off work almost 6 months is now suffering depression (tbh not sure if depression could have caused CFS) its so severe he’s gone from cycling/running/ swimming/football/training his son for triathlons to not even being able to walk round the block.

His job is pretty stressful, they are being very supportive but I think stress could have caused CFS.

Its playing havoc with his family life children are getting confused, its a real pressure/worry on his partner, and for the rest of the extended family (sister, dad and me) my sister lives in the same city as him and is helping as much as possible she also has her family etc my dad and I are 200 miles away.

Just as he feels slightly better he falls even further, he’s had almost every test under the sun for all kinds of things to rule out other causes etc.

As I’ve no real experience of it and we live 200 miles apart I would like to hear if any of you have/are/know anything about CFS I talk with him everyday on way home from work and truly wish I had an answer for him…

Many thanks in advance

There is some very good information here that I found to be very useful….

http://www.kcl.ac.uk/innovation/groups/projects/cfs/index.aspx

Have a look at the ‘Information for Patients’ section and all of the subsections underneath it.

I was never diagnosed with CFS but I am almost certain that I had it (going back about 10 years now and immediately after suffering with Glandular Fever). I just couldn’t get over it and it was making me depressed too. The information in the link above helped me to make a full recovery 🙂

Bump

Whilst the above information was helpful (thanks btw) if anyone has anything else to add that would be great

Thanks

tsd’s link is very useful and covers it very well.

From my experience, graded exercise as prescribed by my doctor works very well. I went from unable to walk for much more than a few hundred metres, to back to bike racing in about a year.

BUT, you have to take it very slowly. Month 1 was just walks, gentle on the flat for a bit, then increasing slightly when I could. Subsequent months saw gentle flat rides for a few minutes, then longer, then hilly, then off-road etc. It takes time, and you have to listen to your body. When the familiar pain kicks in then back off, give it miss for a day or 2, then get back to it.

Be positive about it. Be happy that you’ve walked for 5mins, or ridden for 1/2hr or whatever stage you’ve got to. Don’t race your mates or attempt anything well above your current graded standard as you’ll knacker yourself and be out of action for a while again.

Stick at it, but also recognise what else is happening in your life. If you are busting a gut at work or have stressful family engagement etc, then don’t do anything else for a bit. View everything as positive tasks to accomplish in your own time on the road back to health and those tasks have to be everything in your life as an extra ordinary effort in any area can set you back.

Also write everything you do down so you can monitor progression and spot signs of overload.

I can see how you this could all lead to depression, and all that testing he’s had only adds stress to an already stressful situation. Hopefully all that’s done now and he can move on, accept the CFS diagnosis and embrace a graded exercise route to recovery.

Good luck to him.

cheers so far

My missus had CFS / ME.

Unfortunately there’s no magic solution. All the above advice is good.

It sounds like he’s in the classic pattern – a rollercoaster of highs / lows. As soon as he feels good he overdoes things and has an even worse low after.

Badger the Gp see if there are any alternative therapies available. My mrs had some cognitive behaviour therapy that really helped and got her on the road to recovery. Unfortunately she was off work 1.5 years before she got back.

Your brother will have to learn how to manage things even when feeling good. He will get better if he looks after himself.

There’s a book written by Anna Hemmings about her battles with CFS, i knew her a bit through canoeing when I was a nipper and recommended to a friend of my wife’s when she was suffering with it. Apparently it’s pretty good and turned out to be useful.

No experience of it myself fortunately.

Might be worth a read.

Anna Hemmings – CFS

There is a huge amount of contradictory and conflicting info out there. Please please have a look here Action for M.E

My wife had it when she was 15/16. OK now though she does still sleep a lot and gets tired more than most people.

No real feedback on getting over the ME – they never really cured it, it just slowly went away. She does find now that a lightbox helps make her feel better.

good stuff here thanks

I have a sister in law and a niece who both suffer from ME. It sounds like one of the worst nightmares ever. Both were very sporty before (sis in law was a dance teacher) and went to not being able to walk the dog.

My niece has recently improved tremendously after seeing a dietician/ food Baffin. The dietary advice sounds very restrictive to the rest of us, but finding out which foods disagree with her, and avoiding them has made an enormous improvement.

Obviously lots of good advice coming through here, the only extra I would add is don’t let him get talked into giving up too much stuff: coffee, alcohol, meat, sugar etc etc. He’s just had a large part of his life stripped from him so you need to ensure some of life’s pleasures remain. And make sure they are good ones – so if you like wine but it’s not so keen on you, then drink less but only drink the good stuff. Bit like the cycling when that becomes possible: make it a good ride, not ‘training’.

Best of luck to him. You’ll be amazed how many people do or have suffered.

Just to add to my earlier ramblings on this.

I don’t know how many folk get to shift this completely as I certainly get the odd re-occurance when I’ve inadvertently overdone it and have to reduce my activities. I then grade back up again slowly. Most recently this was at the end of august, then about 3 weeks off any exercise, then v gentle rides on the road bike as its easier to monitor effort, then progressively harder, and now, nearly back again.

All these recoveries from these lows seem far quicker than the original recovery. OR its more that I can spot when i’m going wrong earlier nowadays so I don’t end up in quite as bad state. Anyway, for me at least, its about spotting the signs early, adjusting activity and using graded exercise to recover at whatever pace I can.

Good luck again and tell him to focus on the gains he can make from now and not the restrictions forced on him.

Some people who find they have Lyme Disease had a previous diagnosis of ME / CFS. The symptoms overlap. Other stealth pathogens are available.

See drmyhill.co.uk for ME advice and info.

Sorry, bit late to this.

slowoldgit mentions an excellent link with tons of information. Definitely worth seeking out.

A former neighbour had this, actually hardly used to see her as she was always sleeping following a bout of glandular fever. She did in fact regain her health so much so that she could manage shortish walks with her dog.

Slightly left-field here but an ‘environmental doctor’ may be able to help. A friend consults with one – he’s GMC registered and has a particular interest in the environmental connection. London based though.

It may be worth trying to make some changes such as going gluten-free or not using fluoride toothpaste or giving up dairy products. The list is endless!

The important thing though is to avoid stress as much as possible.

Well done for being supportive. 🙂