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EDS rant after hospital appointment

Apr 17, 2017 4:31 PM

I feel so let down after my appointment with Rheumatologist today. He used Beighton score and only scored me 2 points - 1 for both legs and 1 for both elbows. He didn't examine anything that I told him was painful. He didn't ask me to do all the tests either. I have several family members with EDS. He told me if he tested me when I was younger I would have got more points. He has diagnosed me with Fibromyalgia even though he didn't do all tenderpoints. He told me fibromyalgia was psychological. He has organised an MRI to see if I have arthritis which also runs in the family. And blood tests but I have no idea what they are for apart from one which is for glucose as had glucose in my urine. Diabetes also in family. I am in UK. Any feedback would be appreciated.

Apr 17, 2017 5:01 PM

Is it the hypermobility type of eds that runs in your family? That's what is in mine and it is very hard to get it diagnosed because there are no genetic test that can be done to "prove" it.

Apr 17, 2017 5:04 PM

Yes it is. He dismissed it after not using Beighton score correctly. As far as I'm aware it's a point for each limb but he gave me a point per pair of limbs.

Apr 17, 2017 5:06 PM

When I was tested and diagnosed it was a combination of Beighton score (which does include a point per limb), family history, and my medical history.

Apr 17, 2017 7:00 PM

Ick! Are you allowed to change doctors?

Apr 18, 2017 1:51 AM

New doctor ASAP! I know in the UK you are assigned doctors. I would file a complaint and demand to be seen by someone else. The doctor did not even do a complete proper exam. That is useless. Try to fight to be seen by someone else. I am sorry that you were treated like that. None of us deserve that. Sounds like this jerk needs to retire. Sending you gentle hugs across the pond.

Apr 18, 2017 7:15 AM

I'm with LMB, new doc if possible. Not only is he diagnosing u wrong but he calls fibro psychological? Damn i wish these jerks could spend about a month in one of our bodies, then tell me it's all in my head!

Apr 18, 2017 1:44 PM

I'd like to see these doctors held accountable for staying on top of the latest info in their profession.

Apr 18, 2017 1:58 PM

Fibro is definitely not psychosomatic and we always have to fight so hard to prove it even though there is so much research . Stay strong 💪🏽 I would change doctors but also don't be scared to take them the latest articles and research that way they know you have sources to back you up

Apr 18, 2017 3:08 PM

Thank you all for your feedback. I have spoken to my own GP who has given me some routes to go down to rectify this and said she would write on my behalf if required.

Apr 18, 2017 11:03 PM

There is now sure fire proof of fibro with increased blood vessels in body compared to those who dont have it. It is ground breaking research and could lead to treatment and a way to help with diagnosis. Those who say it is psychological or that it doesnt exist are idiots imo.

Apr 19, 2017 12:23 AM

He may have ordered a blood test for rheumatoid arthritis.

Apr 19, 2017 12:25 AM

I would look for a doctor that specializes in fibro and eds. Sounds like that one may not be a good fit. Good luck to you!!

Apr 20, 2017 3:30 AM

I feel the same, rheumatology just said, yeah it's fibromyalgia and Eds, minimal tests or examinations. I'm waiting for an MRI but have been told to stop painkillers and anti inflammatory, which is causing me lots of pain (obvs)
Although it is good to finally get a diagnosis I do feel a bit fobbed off.
Not had any further appointments through yet so I'm in limbo really. I'm in pain, practally immobile, and depressed 😣

Apr 20, 2017 5:24 AM

I think being told fibromyalgia is psychological maybe isn't the best thing to say to a counsellor lol. Regaining my sense of humour and getting some perspective. Thanks everyone

Apr 20, 2017 10:24 AM

Wow. I am so sorry for what you're going through. I had lots of docs like that . Diagnosis me with everything but the real problem. I wish you the best . Sending prayers your way.. that doc is for sure a jerk . Fight for your right . Don't give up no matter how long it takes 😊🤗 it is not all in your head . 😊😊 the doc needs to get his head exam 🤓🤡

Apr 22, 2017 1:24 PM

Definitely change doc and file a complaint. I can help you with that if you need it. I'm also from the UK and know the system well (I even work in it xD )

Apr 22, 2017 1:49 PM

My GP wasn't impressed either and said she would help me. I believe my son has EDS too.

Apr 23, 2017 9:51 PM

I'm glad that your GP is going to help you; that'll make things a lot easier.

I'm sorry to hear that you think your son has EDS too... The only thing I can suggest is getting him tested asap

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