Advice on broaching the subject of CSF/ME with GP

Hi Simon, just noticed your message. Sorry, but I'm just going to bed. Could be CFS or fibromyalgia. Can't be diagnosed until all other things have been ruled out. A rheumatologist experienced in ME/CFS/fibrosis is best person to diagnose. Regards.

Your symptoms sound spot-on for ME/CFS. Every single one of them. I don't think there's such a thing as "reading too much." Reading is a very important way to get informed about this illness. The more informed you are, the better you can present your situation to your GP. Go to a well-respected website, like the CDC website (CDC stands for Centers for Disease Control and Prevention in the U.S.) Type in ME/CFS and print out a list of symptoms to show your GP (assuming the symptoms resonate with you). Another good website is the "solve me/cfs initiative" website. Advocate for yourself. Don't accept that tired old phrase we often hear:"it's all in your head." I can't imagine depression or anxiety causing all of your symptoms, though a poorly informed doctor may tell you that. Get a referral to an infectious disease doctor, or (second choice) a rheumatologist with a knowledge of ME/CFS. If you see the appropriate specialist, you'll save yourself tons of time and distress.

You sound as though you're feeling intimidated by your doctor. I suggest that it's your body and your health so you should be confident and forceful. It's ok to read up about things; that's your choice and the attitude that people shouldn't take their health into their own hands by learning about it is wrong.

My doctor, who is quite young, thinks it's good that people take an independant interest in their own health by researching online etc, even though some of the things we read may be incorrect, doctors aren't always right either. I've found out things about my health online that my doctors didn't know or were incorrect about, and that my currant doctor agrees with.

Doctors aren't really in a good postition to diagnose ME or Fibro because not much is known about them yet, due to not enough research and no medication as yet, so tell him/her that you want a referral to an ME specialist, or Rheumatologist. Demand it politely because it's your right!

Don't let them fob you off because that'll waste time. I was fobbed off for years, told I was depressed when I wasn't and offered Prozac, which I didn't take. If only I'd known to be more forceful!

As you seem to be gradually developing more symptoms, I can't see why your doctor would pass it off as depression. The same thing happened to me, after getting a back injury at work I suffered very little in terms of symptoms. However, as time went on my symptoms have gradually got worse, with new symptoms occurring. My previous doctor was happy to keep telling me I had IBS and anxiety, and my diagnosis would have stayed that way if I hadn't got a second opinion. I have to admit my new doctor has been very good, in terms of making sure that other possible causes for my symptoms were ruled out, and I think thats the key here, finding a doctor that is willing to listen and act. My new doctor is always quite willing to listen to my views and thoughts, and advise and act on them, however, if I mentioned things to my previous doctor she would look at me as if to say 'I'm the doctor here!', and dismiss many of my views and opinions, and made me feel like most of my problems were in my head, when I knew they weren't.

In your position, I would be tempted to over exaggerate your physical symptoms to your doctor, not that you personally feel like you need to though considering what you are going through, but it may prompt your doctor to start the further investigations you need to diagnose CFS. As an example, you mentioned you have gastro problems, maybe elaborate on this to your doctor and make it sound worse than it is. Many gastro problems don't have to be directly linked to depression / anxiety, I'm sure there a plenty of people suffering with depression / anxiety that don't have gastro / digestive problems, so in theory your doctor should have no choice but to follow this up with further investigation. Write a list of all your symptoms, or even better keep a daily diary of how you're feeling, or what symptoms you are going through for a week or two, and show it to your doctor. But focus more on your physical problems and not mental one's, maybe only mention your worse bouts of anxiety and depression. I do suffer from anxiety, but I made a point of not mentioning it too much to my doctor, and I think that helped me getting the tests I needed to make my diagnosis of CFS as it seemed to him that I was managing to control my anxiety most of the time. Its not ideal to have to exaggerate symptoms but sometimes its the only way to get results. If all else fails, get a second opinion. Either way you need to get the ball rolling, it took me 2 years of investigation to get my diagnosis.

I hope you get the help and treatment you need, and all the best for the future.