Recently diagnosed with cfs after 30 years of feeling ill
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Hi everyone.
I have been feeling extremely fatigued and generally unwell since i was about 16 years old. i have aches and pains that come and go all over my body and swollen lymph nodes in my neck along with regular tonsil infections. After countless appointments to various GP's over the past 30 years and being made to feel like a fraud and fobbed off with being told it's because i'm depressed i finally have a diagnosis of cfs.
in all that time of searching for why i felt so ill for all of that time i have been put under the care of a psychiatrist, had cbt therapy and given antidepressants as if they are sweets. None of that helped me and i went through a long period of just trying to get on with my life as best i could with no support. I would finish work and just fall asleep but never feel rested, my partner would just think i was being lazy as it was and still is difficult to do things sometimes because of the exhaustion.
About 2 years ago i saw a new GP who seemed to take an interest in my symptoms, and after a few tests found i was vitamin b12 deficient. After a few months of b12 injections my levels returned to normal but i felt as unwell as ever. That GP left the surgery i go to, so i saw another gp who told me i was depressed and gave me antidepressants (sertraline) which are probably the worst drugs i have ever been on. The drugs gave me insomnia so my GP upped the dose, this had a rather devastating effect of giving me very dark suicidal thoughts. I went back to my GP and quite forcefully explained that it wasn't depression and that something is wrong with me. More blood was taken and everything was clear apart from antibodies showed in the blood from when i had glandular fever as a teenager.
My doctor explained that i probably have cfs and offered no support or advice on what to do about it and also offered no help on getting off sertraline which left me with some horrendous withdrawal symtoms which lasted for weeks. I initially felt relieved about getting some sort of diagnosis but i still find myself struggling through life, friends and family don't get how the illness affects me and i find it tough to keep going sometimes.
I try to stay fit and healthy, i cycle a lot and my job as a postman keeps me fit but i don't really know how i can help myself and i worry about the future. I feel for anyone that has this awful illness that can leave you feeling isolated, lonely and like a fraud.
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Sockpim guzz73
Posted
Hi guzz73, that sounds rough. I'm sorry you went for so many years before getting a diagnosis. I had mine for about 10-11 years before I got my diagnosis too, through the same way you did (having a different doctor). For starters, your new doctor sounds like he will not only be of no use, but may also try and make you feel like your the problem. I'd request a change of doctor as soon as possible. When they gave me a diagnosis of CFS/ME, they sent me off to a CFS/ME clinic, where they gave me a few sessions on how to manage my symptoms better. Having had it for over a decade already, I knew a lot of it, but I still took away a few helpful bits that have helped me long term.