Cfs

CurlyTop

Hi

I was diagosed with M.E./CFS 6 years ago. My doctor had initially carried out all the tests which kept coming back clear but in the end she referred me to a specialist. It was then he who made the diagnosis. At the time, I was referred for a rehabilitation programme which I found most helpful. This was basically a programme showing what causes the condition, how to live with it, how to pace yourself so that you don't 'boom and bust' (ie, do too much and then spend days laid up getting over it). Could your doctor refer you to a specialist to see if there is anything similar they could do.

I'd also recommend having a look at the website of the m.e. association: http://www.meassociation.org.uk/

This has some useful stuff on it. On the right hand of the page there is an order form for leaflets you can get sent through to you, some free, some you have to pay a fee for.

I still work but found I was spending the weekends 'banking' the energy for the week ahead. No way to live your life. I've ended up jigging my hours and now work a 4 day week. Its early days but I'm hoping this will help. I have a foldy up walking stick that I take with me when I go for out for a few hours because I can guarantee I will get tired and my limbs get sorer so its a little harder to get about.

One of the biggest things I found helpful was to stop napping in the afternoons. It enabled me to sleep a bit better of a night time. I reckon I get about 4-5hours in and then I'm restless. As Lady Morticia says, know your limitations and don't do more than you are able.

Hope this helps. Good luck. xxx

Isis_Black

Wow thanks curlytop :-)
Sounds like you've gone through the wringer too :-s

I'm definitely thinking I need referring to a specialist as she's only assuming its CFS,
Good idea on the fold up walking stick :-) may have to take a look at them

Me I do need to slow down but feel I'm not doing enough if I do
I try to get shopping all do in one day :-s I'm so exhausted by the end and in Ian it's stupid but I never learn lol, guess I'm going to have to :-s

I need my hubby to learn to drive as I feel at some point my ability to drive could be hampered, I was a bit a few days ago with pain in my back :-(. But I have a drive to Wales in a couple of weeks which is going to wan tons of stops and possibly the next day not doing much at all (luckily site has a beach, will keep kids happy )

Thanks again and I will take a closer look at the me association site, already been but not looked enough yet

Anubis_2

Chronic Fatigue Syndrome and ME are not the same contrary to popular belief.

What LM says is important - know your limitations

Isis_Black

They are the same
CFS is commonly preferred by the medical profession
ME is preferred by the sufferers as they have more problems than just fatigue and feel the term CFS isn't the right term so when it is talked about its now usually stated as CFS/ME

Mojisola

Isis_Black wrote: »

They are the same
CFS is commonly preferred by the medical profession
ME is preferred by the sufferers as they have more problems than just fatigue and feel the term CFS isn't the right term so when it is talked about its now usually stated as CFS/ME

No, they're not. There are people who have a chronic fatigue caused by a range of problems. There are other people who have ME which involves a lot of other problems as well as fatigue.

The NHS has decided to use CFS as a catch-all diagnosis and this has created a lot of problems for people with ME.

For example, if you do research on depression but use selection criteria wide enough to include people who are just "feeling a bit down", you may show that the tested treatment is very successfu even if the only people it has helped are those "feeling a bit down". That treatment can then get approval for use with people with depression.

This has happened with the testing of management techniques for ME. The selection criteria have allowed people with ME, fatigue symptoms and even depression into the test groups.

Isis_Black wrote: »

I've tried as best I can to live life normally

This is the just about the worst thing you can do. Your body needs time and rest to heal itself. If you don't build that into your life, you will not get better and will probably deteriorate.

If you understand what's happening in your body, it will be easier to give it the time out it needs - http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

You can also download Dr Myhill's book for free - http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill.

Yes, I know she calls it CFS and not ME but she is a very pragmatic person - if the NHS is giving people a diagnosis of CFS, that's what they'll search the web for. Her basic recommendations will help whether you have ME, CFS, sheep-dip flu, Lymes disease, glandular fever, etc.

LadyMorticia

Hey Isis.

Anubis and Mojisola are correct. Alot of other conditions can have CFS with them i.e. Rheumatoid Arthritis and other conditions, whereas M.E tends to be "stand alone", if that makes sense? I don't mean stand alone as in people with M.E don't have other health problems, but stand alone as in the M.E isn't caused by another condition.

I'm not sure how else to describe it!

Anubis_2

Isis_Black wrote: »

They are the same
CFS is commonly preferred by the medical profession
ME is preferred by the sufferers as they have more problems than just fatigue and feel the term CFS isn't the right term so when it is talked about its now usually stated as CFS/ME

I am afraid that is not correct.

ME is generally more debilitating, degenerative and can be fatal in a few cases.

CFS tends to be a comsequence of other auto immune conditions such as Lupus, fibro, RA, etc although there is primary CFS also.

At first the likes of ME, CFS, Fibro (and to some extent Lupus) were all grouped together as one. They do have overlapping symptoms, and, unfortunately misdiagnosis, particularly of CFS, ME and Fibro and Lupus, and even MS at the start, is common.

The irony is, unless CFS is primary, that usually Fibro, ME and Lupus are accompanied by CFS also - those three conditions rarely come alone.

It can be difficult also to get DLA on a diagnosis of CFS alone (easier with ME as it tends to be more debilitating.) It is important to have the right diagnosis but unfortunately this can take years.

Lum

Not much to add. I'm a carer for a person who has ME/fibro amongst a variety of other disabilities, and most of the things I'd say have already been covered.

I would like to add though. If you haven't already done so, have a read of the spoon theory. The person who wrote it suffers from Lupus, but it applies just as much to M.E. It's a fairly short read, and it's a particularly useful link to pass to people without M.E. who don't understand the condition, e.g. family members or employers.

mynameistallulah

gingergee wrote: »

Go see yr GP and ask to be referred to occupational health. They will assist you in the home with anything you need. My OH are brill, got my crutches same day xx Hope you get sorted xxx

Just to clarify, you need to ask for a referral to Occupational Therapy - OH has a very different remit.

LadyMorticia

Lum wrote: »

Not much to add. I'm a carer for a person who has ME/fibro amongst a variety of other disabilities, and most of the things I'd say have already been covered.

I would like to add though. If you haven't already done so, have a read of the spoon theory. The person who wrote it suffers from Lupus, but it applies just as much to M.E. It's a fairly short read, and it's a particularly useful link to pass to people without M.E. who don't understand the condition, e.g. family members or employers.

Totally forgot about the Spoon Theory! Yes, OP, definitely read it. I've found it very useful explaining to others who don't understand how things affect me.

It's also funny when you say to someone "I just don't have enough spoons" and they're like "What do you need spoons for?! There's nowhere to make any tea!", or am I the only one that's happened to?

mynameistallulah wrote: »

Just to clarify, you need to ask for a referral to Occupational Therapy - OH has a very different remit.

I guess OH's could be therapeutic.:p Or in some cases, make you even more stressed!