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I've been dealing with/trying to get a diagnosis for M.E/CFS for almost 10 years now (i'm 25). I have very recently just started on the right path for my diagnosis etc. They have told me that it is M.E but i think they are stumped as to what/how to treat me and are therefore dragging their heels a bit. My GP and nurses are lovely and good at what they do, but there is an obvious lack of knowledge about this condition between them all and i just feel as if i am being fobbed off or overlooked as not that serious or important. The day-to-day pains and crippling fatigue have been a real burden of recent and i just don't seem to be getting anywhere with the health proffesionals i've been seing. My big issue is that i live in North Devon. The facilities down here are severaly lacking and any specialist clinics etc that i have found are all some distance away and quite expensive.
Does anybody have similar experience with their GP's? And is there anywhere i can go to that isn't half way accross the country and going to cost me a months wages jsut to be seen? I'm absolutely desperate now!!
Thank you in advance kind people
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I had the same problem as you and ended up paying to go private. The advice I was given was....
to pace myself. Rest as much as possible when you're having a bad day.
Be conscious of the food you put in your body.
Cut out caffine / chocolate / fast food
Eat lots of fruit and veg and protein (chicken / turkey & fish)
Take vitamins: I was told by my specialist to take tent following:
EPA fish oils
Selenium & vitamin C.
Gentle walking & exercise as and when you can but don't push yourself because you'll suffer the following days.
Since I've put in place I'm in a much better place. Took about 6 months but I got there! I've since been diagnosed with food intolerances which is caused by the chronic fatigue but that's another story.
I also keep a daily dairy on my iPhone in tent notes section and just jott down how I feel each day so I have something to look back I and see how far I've come.
I hope the info I've given you will help you, it certainly helped me!
Thank you again
I also live in North Devon. There is an M.E Clinic based in Exeter. Before I was diagnosed one of the OT's came out to my house as I was housebound. She did this a couple of times to teach me how to pace by filloing in a diary (that in itself caused more fatigue) Can you ask your G.P to refer you to the clinic? I don't know if there has been any change to services because of funding. I was diagnosed around 2007/8. The M.E Association have some publications on M.E which you can give to your G.P. (Mine found it very informative). Good luck.
Unfortunately, I think GPs who have much knowledge or even an interest in ME/CFS are few and far between. To be fare to them I just don't think they have the time. The standard GP appointment is 10 mins in which time they have to briefly look at your notes and get you in and out, which means you get about 7 mins.
I agree that living in a rural area must make it more difficult because of travelling.
I have found that there is lots of of invaluable advice to be had from members of this forum and other ME info sites. Read as much as you can about other peoples experiences, you may find that will help.
I live in the U.S. so can't respond to some of your questions. However, I just wanted to caution you about doing too much and pushing yourself. With ME/CFS, you can risk make the illness much worse if you try to push through the fatigue. I did this, and 2 years later still haven't recovered. I know there are financial considerations, but cutting back on all activities, including work, and pacing yourself, can increase your chances of feeling better. If you don't take care of yourself and rest, the disease can make the decision for you, eventually making it impossible to work. This is what happened to me. Also, as far as treatment--the best treatment is rest and pacing yourself. Also, eat healthfully (no sugar or caffeine), get a good night's sleep if you can, and minimize stress. There's no drugs or magic pill that cures this illness, unfortunately. Google "solve me/CFS initiative." Lots of information of that website.
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