It can be a frustrating experience trying to persuade your doctor that something is wrong with you if you have EDS. Many people have struggled with symptoms over the years, only to be told there is nothing wrong with them or it is all in the mind! Many others have been misdiagnosed with ME or other chronic illnesses. I have been drip-feeding bits of information to my GP over the last six years as I have been discovering things. A while ago I decided to be courageous and I booked a double appointment. Since my GP still knew virtually nothing about EDS, I thought it would be helpful to provide as much background information as possible.
From my reading about EDS I put together a ten-paged list of symptoms (you can find it below), and added as much personal detail as I could remember. Not only was this a salutary experience for me to see clearly on paper just how much has been going on over the years, but I also thought it would help the doctor to see things too. Often when we go to the GP we present with one particular thing: whatever is hurting the most at the time. It is probably treated as a discrete symptom, rather than part of the syndrome which is EDS and which is systemic: affecting the whole body.
My GP was great, and realised I had put a great deal of work into finding out about EDS. We looked at things together, and she was willing to refer me to see a specialist hypermobility unit. I went for my appointment in December 2012, and I was very excited at finally being officially diagnosed and helped to know what to do next. I am very lucky to have a GP who is patient and understanding. It makes all the difference.
I also asked my surgery if I could see my medical notes as far back as they can go. This is not always an easy task to accomplish because of the sensitivities of storing notes of many other people as well. But they have been very helpful, and are allowing me to see notes under supervision. I think this is helpful in joining the dots of my medical history in a whole EDS picture.
If you need a way in to talk to your doctor then feel free to download and print the form I’ve created, fill it in, copy it for yourself and take it to your GP at your next appointment.
I created this ten-paged form from various books and articles I read, and had great comments from Prof. Rodney Grahame when I showed it to him at my diagnosis appointment. I do hope it will be helpful for others. Please feel free to use it, but I’d appreciate mentioning that it is from me. My apologies that each page is saved separately….I couldn’t find any other way to do it because the files are too big!
Read this for a doctor’s perspective on dealing with patients who have chronic pain:
2 thoughts on “WHAT WILL MY DOCTOR THINK?”
Thanks so much for this, I’ve recently learnt that aspergers syndrome and sjorgrens can also go with EDS (I have both) I really hate my premature aged hands and feet and my big head, I might have missed it but is costochondritis on your form (rib ligament inflammation) and wide tongue ?
I cant get diagnosed because unfortunately I also have fibromyalgia and the day i saw a rheumatologist (who was an awful woman) i was having a stiff day,she didnt seem to comprehend that i alternate between stiff joints and lax joints,despite my GP telling her im hypermobile, only today ive had to have a steroid injection in my shoulder again because ive put my shoulder out for the millionth time
My, I’ve left it ages to reply to you – please forgive me. Thanks for your helpful comments. I’m updating the form and will put those things on it that you mention. So helpful. I feel for you. I’ve found a wonderful osteopath who is simply marvellous at helping to support and put things right each week! I don’t know if that might help you? Take care, Claire