I've got to the point where no one believes me when I say I'm not mentally ill. My GP and consultant both diagnosed CFS and suggested CBT and graded exercise. To be honest, I'm completely fed up of trying to prove to people that I'm not depressed, that I don't have trouble sleeping, I do exercise regularly etc. so I thought I might try a psychiatric referral in the hope that perhaps it is all in my head and that a psychiatrist with his CBT and graded exercise will be able to "cure" me.

I don't mean to sound so cynical, but I don't even believe I have CFS. I've just had enough of feeling like I want to drop off to sleep all the time and the coldness in my hands and feet is driving me crazy - they ache so much from being cold!

Any thoughts on CBT and graded exercise would be genuinely welcome.

kiya

Kiya,

Believe me when I say I (and everyone on this board) is so frustrated with this illness. You will find that your emotions will be all over the place. I go from depressed, frustrated, angry, doubt and back a million times a day.

I have been dx with CFS/ME, but as you know there are no tests for this thing so no wonder you're feeling the way you do (and even starting to question your own sanity).

God knows, I am still trying to come to terms with acceptance. I still think everyday that I've only got an inner ear disorder (had vestibular testing recently and came back with either CNS damage or one sided damage to ear!). I also think I could have Lyme or an undiagnosed illness. That then leads me back to thinking I have brain damage and it all goes around in my head every single day. There isn't a day where I can forget about this thiing and lead a NORMAL life! I also have a whole host of other symptoms such as broken sleep, depression, anxiety, vivid dreams/nightmares, chronic neck/upper back pain (MRI's all clear), headaches in back of neck and forehead, tinnitus, disequilibrium, brain fog, feeling stupid, dizziness, jump at the least thing etc.etc.etc.

Just before all of this started I went through a few years of bad diet, overwork, negative thoughts/surpressed emotions. I think this is what has caused it for me, but I STILL don't believe it's CFS as I can work full time, only get mild muscle fatigue, but can still walk 2-3 miles a day.

I've almost stopped running to doctors now as I've seen around 20 in the last 17 months. I don't think I'll ever get over my mysterious illness

So believe me when I say you are not alone in this. Maybe one day soon they will find a test then develop a cure for CFS/ME/FMS and we can then return to a better symptom free life. Till then, I guess acceptance, good diet, sleep hygene, meditation and CBT is all that's on offer.

Take care,

Mike.

Hi Kiya,

Yes I totally agree with Mike and yourself over the frustration of this problem. I have also been diagnosed with CFS and was sent for graded exercise a few years ago. It was a total waste of time. This stupid woman basically told me to walk so far one day then a bit more the day after blah blah, get up at the same time every day. That was about it. It did me no good at all, especially when some days I could hardly stand for more than a few minutes without practically passing out.

Anyway I am exploring the possibility of adrenal fatigue at the moment and seeing someone on Sunday. I have looked back at a few of your past posts and from your symptoms and your thyroid level of over 3 I think you certainly could have a thyroid problem. If I were you I would try and see a private doc who specialises in this. The NHS havnt got a clue when it comes to thyroid problems unless it is glaringly obvious.

Good luck and dont give up (I can relate to the freezing cold hands and feet too - I have 2 hot water bottles in bed at night lol)

Take care,

Chris x

Thanks for your replies! :)

I'm in the process of writing a complaint letter to the hospital where I saw a "thyroid specialist" about my suspect TSH. It's making me feel better typing it, but what good will come of it, I'm not sure!

The NHS is failing in so many ways. Thyroid problems, impaired glucose tolerance - things that are not being picked up because labs refuse to do the tests asked for by the GPs. It's ridiculous!

I don't believe CFS exists as an illness in and of itself. I think it's a collective name for a whole load of different illnesses for which doctors know neither the causes nor the cures. I think medics should spend less time referring us to psychiatry and more time studying up on the causes of fatigue.

Hmm, what I'm considering next is going to a private GP as there's one nearby. I do have an NHS appointment with a consultant gastroenterologist in a couple of months - I'm taking someone else along with me this time, as last time I spent a good half hour fending off stupid questions about how depressed I must be feeling and how I must sit in my room every day doing nothing. :rolleyes:

Anyway, thanks again for replying. It's so good to know that there are other people out there going through similar things - although there shouldn't be any of us... and if we were treated properly, I don't think there would be.

kiya