ME Clinic, weight and tummy aches

On Tuesday I had my first appointment at the local ME clinic. Sorry for not reporting back about it sooner.

My ME appointment went well, though it lasted 1hr 30mins and I got information overload! Was tiring but positive. I saw 2 nice doctors and an occupational therapist. I do have ME – glad to get a diagnosis at last. I fitted the 2 different diagnosis methods they use. Was interested to find that symptoms I’d assumed were just one of those things, are actually symptoms of ME, such as becoming dizzy when I stand up too quickly, getting breathless easily and feeling nocturnal. Was very glad that the doctors I saw had read through the questionnaire about my symptoms that I'd previously filled in and sent back to them, as that contained my whole complex medical history, so I didn't have to recall that all again.

A letter will be typed up and sent to my GP. The doctors suggested I try Melatonin to help me sleep, but my GP will have the final decision on that. He’s great, so I don’t think there’ll be any problems. The doctors also want me to have an MRI scan as they had a slight concern about my pituitary glad. Apparently if there are problems with that it can produce ME type symptoms and also a lack of hunger and thirst (which I have). They think it’s unlikely that there’ll be any problem, but think I should have it ruled out. Not sure about that though as I’ve struggled with claustrophobia when I’ve had MRI scans before.

The doctors thought that the trigger for my ME might have been the general anaesthetic that I had last July for a routine operation, despite me having many GAs before that. I’m not concerned about finding the trigger though.

I’m now filling out an activity diary for 1 week and then I’ll get an appointment with an occupational therapist to learn how best to manage my energy. I was surprised to discover that what I call resting (reading, watching TV…) isn’t actually resting (doing nothing). At the moment I don’t like doing nothing as I like to keep my brain busy, so I think learning to do that might be a bit of a challenge! Going to try some relaxation techniques though, so will let you know how that goes. I've been filling out my activity diary for a day and a half now and it's making me realise that I'm always on the go. And I rarely just do one thing at a time too - when I eat my breakfast I check my emails and surf the Internet, when I watch the music channels I also play on my DSi... Think I need to slow down a bit! ;)

I was very pleased that one of the doctors thought I was older than 18 :D I know I look younger, but the doctor said that I sounded much older!

I’m feeling very positive about the diagnosis as I should be able to access help and support now. I’ve joined a support group for young people with ME (called AYME) online and I’ve also found a great forum called Foggy Friends. If you're interested to find out more about ME, I found this on the Internet a few days ago and have printed out copies to give to my friends. It explains ME simply, but accurately.

On Tuesday I weighed myself and wasn't surprised to find that I'd lost some weight because I've had this tummy bug. My dietician is quite concerned though and thinks I might need to seriously consider going back onto enteral feeds again :( I'm getting over my tummy bug slowly, but now I'm eating more I'm suffering from bad tummy aches again. I think some foods I eat are triggering the pain, but I can't work out what. It's making it really difficult for me to eat at the moment because I'm worried that I'll be in pain afterwards. Yesterday I received a phone call from Hospital B (who I've not seen since last October), asking if I could attend an outpatient clinic next Wednesday. I'm free then, so can attend at such short notice. Will let the team know about my new diagnosis and also hope to speak to my dietician about my weight and stomach aches. Apparently Irritable Bowel Syndrome can be a symptom of ME, so that might explain my tummy aches.

My cough and cold are still lingering too, so I'm not feeling great at the moment. Also feeling quite tired because I've had a busy week and haven't been sleeping very well. One of the symptoms of ME I suffer from is called sleep reversal. After feeling tired all day sometimes I then become full of energy from around 11pm. This can make getting to sleep quite tricky. This is worse some nights than others and last night was a bad one. Hopefully the Melatonin will help with this though. I was on Melatonin briefly post transplant and it normalised my sleep pattern then, so hopefully it will do again.