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This is the first time I’ve posted so not sure if I’m even in the right place! I have a long medical history of joint pain, from aged 6, and fatigue. Around 9 years ago I had a hysterectomy due to excessive bleeding (years of it) and became quite ill after. Doctor initially thought brain tumour but after a few years of tests etc, neurologist settled on M.E and fibro. These last couple of years have been horendous to the stage where I’m hardly at work (I’m self employed so really need to be, staff cover isn’t really an option). Crying is a daily thing due to pain and fatigue. My daughter (late teens) has a history of pain etc too and was diagnosed with EDS earlier this year by a geneticist. I was at the appointment with her and was asked about my health and was told (unofficially as it was my daughter who was referred) that I have it too. I’m just back from my doctors surgery and he said I can’t have EDS as I don’t have the right skin and not hypermobile (I’m stiff now but this is the same doctor who told me 20 years ago my pain was caused by there being too much movement in my joints!). I had went armed with lots of information, incase he didn’t know a lot about it, but didn’t even take it out of my bag in the end. Also took a pretty comprehensive list of my health over the years as we moved away for a few years, just incase anything has been lost when changing surgery but he wouldn’t take it. I asked what now, as I’m not sure how much longer I can go on like this and he said he doesn’t know what to do with me and that was that! I’ve been trying to hide how bad things really are for years now but finding it extremely hard.
I’m so sorry for your suffering, my friend. You are certainly in the right place, however! Most of us have been in your shoes, and lack of validation is a huge problem for us all. Over time, most of us end up with a doctor or two who can help us, even if they aren’t “experts” in EDS or chronic fatigue. I hope the information on this site can answer most of your questions as you continue your search for good doctors. Did you see the portion in the book about validating the patient (written by the psychiatrist who has EDS)? I hope it is hugely helpful for you and others to understand that you are not alone, despite what many doctors may lead you to believe. Hang in, 😉
You should find a new doctor who will accept that you have EDS. It’s hard for us to find doctors. Most doctors are taught that EDS is very rare and has obvious signs. They don’t have up to date information. Their info is at least 10 years old.
I would just like you to consider that you and your daughter may be Magnesium Deficient. Have you seen Dr Diana’s video on Magnesium Deficiency ? It’s very enlightening
http://prettyill.com/videos/watch/the_magic_of_magnesium
Regards
Barbara
(UK)
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