cronic fatigue syndrome

[addictediam]

Im just back from a consultant appointment where he has told me there is not Mich more he can do (in terms of tests) and I have cfs. He's discharged me from his department (endocrynology) and revered me to a consultant who specialises in cfs.

I feel so fustrated and angry at my body. I'm fed up of not being able to do things and people thinking I'm making it up :( I actually want to cry I was really hoping there was a drug I could take and now I know there isn't.

So after my pity party how can I get better the endo mentioned diet and exercise could help and the specialist would help with that. But i really don't want to wait for the referal and then wait for the appointment. I want to be better now!

Anyone else going through this who can advise?

Not going through the same, but I couldn't just read and run. So sorry to hear about your diagnosis and the seemingly hopeless lack of any treatment. I'm sure others with experience will have some suggestions.

My only advice would be to make sure you have had EVERY blood test going and ask for all results, just in case there is something borderline which is being missed. Take care of yourself x

It must feel awful being in that situation. It is true about exercise though, I know that's the last thing you'll fancy doing, but it really does do wonders. Take it gentle at first and gradually increase what you do. Good luck, I hope you start feeling a bit better soon.

Theepilator I've had so many blood tests I feel like a pin cushion! I'm within the normal range for everything. They do want to retest me for diabetes tho as that test was just under 1 year ago and my baby was 10lb 9oz so the endo thinks I may have developed it during pregnancy (as does everyone else!) And he wants to make sure I don't still have it.

Smartie I actually really want to exercise, i used to be really fit and active, but just haven't got the energy and when I have I just want to spend it with my dcs doing something fun with them. Hopefully the specialist can help with ideas on what to do with them

Well said epilator

I had three diagnoses of CFS before I got to an endo who could understand my test results properly.

The standard NHS leaflet on CFS admits that there is no diagnostic test, no treatment and an infinite variety of symptoms. I was not prepared to accept a diagnosis on that basis.

Your blood test results may be within the reference range, but are they optimal? That is the question.

D

Hi there

My advice is probably TERRIBLY out of date as i had CFS when I was 14, suffered for about 5/6 years and then it got a lot better. I still have bad days (31 now) but it's once in a blue moon so I would no longer call myself a sufferer.

My doc at the time said much the same as yours, there is no real treatment, but recommended a high dosage vitamin C for when it was at it's worst. I used 1000mg from boots and it made a real difference to me, sometimes it was all that got me through the day (although there were days when nothing helped).
He also said to get out in the sun as much as possible, even if it was just sitting in the garden.
His final recommendation was yoga. I could not do the whole going to a yoga class thing so I got a dvd and did it when I felt well. Whether it helped or not, I really cant say.

I also used to go to a specialist at the hospital, who would repeat this advice to me monthly, stick me with needles and make no real difference. can't remember the real name of the dept (damn pregnancy brain) but it was the same place that HIV patients went, as I remember as a young teen thinking that they thought I had AIDS (stupid teen)

Not sure how much that helps, but please be assured, it CAN get better, I'm proof

Try to find out if they are confident of the diagnosis, it would be awful to be misdiagnosed with CFS if instead it is something else that's more treatable.

If it is CFS, go carefully with the exercise. Yoga better than jogging.

niceguidelines.files.wordpress.com/2011/07/simple-version-of-the-international-consensus-criteria-to-be-given-to-gps-and-consultants1.pdf

www.mumsnet.com/Talk/general_health/1105040-Could-I-have-mild-ME

www.investinme.org