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Ehlers-Danlos Support UK
2,147 members β€’ 680 posts

What info to take to doctors?

Im arranging to go to the doctor soon with as much info about EDS as i can. Are there any documents etc that you would advise I print off to show the doctor? On one forum I saw a list for EDS type 3 and I fulfilled so many of those symptoms but is there a particular official page that helped you push for a diagnosis?

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I took a list of my symptoms, ordered by how much it affected me from permanently to very occasionally. If you want to take in a list of EDS symptoms and co-morbidities, there is a really good list here - you can just tick or colour code what you have: edhs.info/symptoms

Now this is where hopefully your experience will differ! My GP took one glance at my list and put it on the table upsidedown. I tried to remember what was on it and explained some of the worst symptoms. Then I cried. At some point I mentioned my joints feeling hot as well as painful and being stiff in the morning. She then refered me to a rheumatologist (after telling me to lose weight for the umpteenth time - she was no twiglet herself).

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Aww thats so sad :( im so sorry you had such a bad experience.

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I just hope the list is useful to you.

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I tend to agree with Jay66. From what I have experienced with many doctors is if you present them with a list they will automatically switch off. Tell the doctor about your presenting symptoms, even the comorbidity ones, say you don't know if they are linked but you have....

Tell him/her, for instance that you have always had problems with your joints, you have a past medical history of this or that, surgeries, treatments etc. Have you ever seen a physio? Could they do a report? Doctors tend to take their findings more seriously than the patient's subjective views!!

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Ive been referred to a physio and discharged from the rheumatologist after just 1 visit.

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What tests did the rheumatologist do? Did they at least acknowledge that your joints are hypermobile?

I would focus on the impact that joint pain is having on your life. The GP may not be able or willing to make the connection between painful hypermobile joints and the comorbidities of HSD/hEDS even with a list presented to them but getting a referral back to rheumatology (find out if there I anyone in your local dept that has knowledge of hypermobility disorders) could be the first step. If you make it clear how much it is negatively affecting your quality of life your GP is obliged to take you seriously.

Best of luck

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The rheumatologist said i have hypermobility and discharged me after referring me for physio. Ill have to look around for a rheumatologist aware or hypermobility disorders. Thank you.

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I relate to your awful experience. It's just terrible how we've been treated. I really hope this is set to change xxx

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It can be difficult presenting the wide range of symptoms we suffer to a GP. Sadly In most of our experiences we find GP's have limited knowledge to understand complex health problems and at a loss as to what to do. We can end up going back and fourth and round and round for years without any success. But once you yourself have began piecing the puzzle together you are on the right road. So now you have to be assertive with Doctors and help direct the course of action you need. If you have done your research and know - as much as you can at this stage- what it is you believe you're dealing with, tell your Doctor and back-up your own symptoms with documented facts that you can print or get from ehlers-danlos.org and hypermobility.org Good luck xxx

Remember as it stands at present, a GP is unable to diagnose hEDS and HSD.You will need to be referred to a specialist rheumatologist. Once you have a diagnosis your GP -hopefully- will be able to help you manage your condition, and refer you to a multidisciplinary team if and when required. I say 'hopefully' as I've still found that sometimes this is difficult. But it comes down to their lack of knowledge and all the more reason you need to be well read on itπŸ‘

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Thanks :)

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just to add to what Tillyray says, this book is very good too redcliffhousepublications.c...

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Thanks :D

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I had a referral to a rheumatologist by a GP rejected by the NHS clearing! The endocrinologist and gastro referrals were accepted. The registrar attached to the endo suggested eds and he did a 24hr bp monitoring and followed with echocardiogram but his boss wouldn't do a referral to a genetist or rheumatologist so I had to go private!

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That is appalling.

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Not uncommon though I fear. πŸ˜”

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