Constant Fatigue Syndrome

[888sally888]

My daughter (23) has been diagnosed with this and is really struggling.

She is hugely tired and get really bad pains in her joints. She is due to start a new job in a couple of weeks and god knows how she will cope.

Is anyone on here living with this condition and has any advice?

Many thanks.

[LazyGun]

Part of the problem in offering any advice is that there is very little consensus on what CFS actually is, or what the cause might be. Indeed, there is still contention over whether it actually exists at all.

No idea how good this website is, but you and your daughter might find it of interest/use, sally...

http://www.foggyfriends.org/

[237SJ]

There are forums on the action for M.E website as well - the forums link is at the bottom of the page.

[Clanad]

Check some reliable web sites concerning the use of coconut oil... Has to be the non-hydrogenated, organic kind found in most health food stores (at least here in the U.S.).

Here's one such discussion site: http://www.doctoroz.com/videos/surprising-health-benefits-coconut-oil

But that's only a suggestion... get as much information as you can. I can only attest to a friend that fybromyalgia (sp.) for a number of years (age 28) that found great relief taking about 5 tablespoons (maybe 1/2 ounce) per day It's not unpleasant and surpisingly, many of the myths about the fats in coconut oil (Not palm oil!) are just that.

Anyway, get some informaiton on it... and best of luck!

[bednobs]

sorry to hear this Sally. the problem is of course, that there is no "standard" treatment for CFS, except graded exercise and psychotherapy. many NHS bodies class it as a mental health condition. Many people don't even believe it exists, because it's a diagnosis of exclusion (ie when you've excluded everything else it's the only label left)
It used to be called "yuppie flu"
People can either just spontaneously recover, or have it forever

[Scarlett]

She needs to do an elimination diet. So many fatigue and joint problems are caused by food intolerances. I suggest if you can, go to http://www.yorktest.com and pay to get a blood test to see if she is allergic to certain foods. Then eliminate them. if this is too expensive, do an elimination diet yourself- google them. You cut out allergens for 3 weeks and then gradually re-introduce them one by one and note the symptoms. After 3 weeks if she is not feeling better, you know that it's not food that is the problem. But I bet it helps.

[LazyGun]

I suppose a food allergy or food intolerance might be the problem, but rather than pay through the nose for the YorkLabs Test you would be a lot better off both in terms of clinical opinion and in terms of your wallet were you to consult your GP first.

What the York Lab test measures tells you nothing about the bodies intolerance to food, or whether you have an allergic response to a particular food group.

All it tells you is what food groups your body has been exposed to. If anything, we should be calling the York Labs test the food tolerance test, not the food intolerance test!.

And the first screening test will cost you £10, a more detailed analysis £250 plus.

[Scarlett]

Here's a review which shows you what you get from doing the test.

[Scarlett]

Or just type york test into YouTube- that's the first one on there.

[LazyGun]

Or - you could recognise that a "food intolerance test" based upon measurement of IgG antibodies is not necessarily a measurement of food intolerance at all, and that recommending that someone spend 10 or maybe 250 or more merely on the basis of the symptoms recorded here is not especially useful.

http://www.bda.uk.com/foodfacts/AllergyTesting.pdf

[Eve]

I believe things like pacing and routine are very important in this kind of condition. Making sure rest is achieved, even if it doesn't feel like it is making much of a difference and establishing a gentle easy routine to try and cope with at least major things, like a job.

Does she live alone? If so, then make sure she has backup plans in place so she doesn't have any pressure on her to do more than she needs to, for example food that can be stored and easy to prepare if she is too tired to get out of the house and things she can do while resting like reading or watching DVDs.

She can then "layer up" and do a bit more if she feels she can.

Occupational Health may be able to help her with techniques for coping.

If she doesn't have support at home, are you or other family or good friends close so that she has someone around if she needs them?