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Ehlers-Danlos Support UK
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Confused over diagnosis!

Hello all, I wonder if someone can help me, please?

I went for an assessment at the local fatigue clinic yesterday, and was seen by an endocrinologist. He did a quick check of my symptoms (fatigue, generalised pain esp in lower quadrant, IBS, brain fog etc) and said, “I know what I think you have, but I’m not telling you yet.”

Then he did a bunch of physical tests, including what I now realise were tests for hypermobility.

He dictated his letter and my husband took notes - CFS, and Ehlers-Danlos of an undefined type.

I am pretty darned confused! I went in expecting a diagnosis of CFS or fibro, but this EDS suggestion has come at me completely from left field! And it is bothering me rather. He said it was based on my symptoms and also my physique (very tall, very thin) as he has experience of it being sth associated with my body type.

But…

I am *not* hypermobile. At least, not as far as I know. I can do reverse namaste and link hands behind my back, but none of the other tests (fingers round wrist, bending thumb back, hands flat on floor etc) show any evidence of hypermobility. I used to do yoga years ago and was always upset at my complete lack of flexibility!

So I’m wondering how I can possibly have EDS. Isn’t it always characterised by hypermobility? Does anyone have experience of someone being diagnosed with EDS who doesn’t have hypermobility as a symptom??

Thanks so much!

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I’m so sorry you had such a bad experience with someone who should understand tact and the patients right to information. There are several types of EDS, not all characterised by hypermobility, but it sounds like you need to get an appointment with a rheumatologist and talk through your concerns. EDS can sound like a scary thing, but with management can be fine, but try not to panic or speculate until you have more information.

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how old are you? You don't have to answer that in public! As we age our hypermobility can get less pronounced, and if you didn't check out these things when you were younger you might have no idea how hypermobile you were.

Additionally as Ali ays, there are several types of EDS, and not all of them have a high degree of hypermobility. There is also the other two core symptoms, tissue fragility and skin hyperextensibility. EDS is a disorder of the connective tissues, often involving the synthesis of collagen, and there are 28 different types of collagen and it is found in every cell of the body.

So don't worry, this could actually be a good thing as it could answer all those questions like, why me! This could be the answer to not just your chronic fatigue but your IBS too, and some other things as well. in fact many people with Fibro and Chronic Fatigue actually have EDS as the underlying causal agent of their symptoms.

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Definitely think outside of everything so far. It's useful to consider all angles if a definitive diagnose cannot be reached with tests and one is dependent on a clinician who is present a fraction of the time.

When do you experience these symptoms? What triggers them? Are they all the time or periodic? Have you had any bleeding or infections? Do you have any signs of water damage or mold in the home or office?

Hugs! Zebra or Horse we pray you run a good race 😄

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Blimey, your story actually mirrors mine. I've just been diagnosed on the 2nd Jan. Same story to be honest. The rheumatologist said to me that you may have done the flexible things when I was younger but with age that is more difficult. As the symptoms now show more as stiffness of the joints rather than the hypermobility.

I looked at a website called hmsa which he recommended and that has helpt me a little but I'm still doubting it.

Either way the treatment is the same for fibro or this. Physio, CBT, medication etc learn pacing and pain management so I'm gonna carry on n wait for the treatment I'm due. But i will keep asking and rising the question. Am I really a hyper person.

My advise is get reading on the internet it will help. Write down any questions you have and ask them next time you see them.

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Hi everyone,

Thanks so much for the replies! It has really helped to have some comments and guidance and general thoughts from people in a similar position.

I’ve been doing a lot of reading and am feeling quite positive now. Like you say, Ali D, the treatment is the same whatever the actual diagnosis, so I’ve been working *really* hard on pacing myself and it’s been going quite well.

I wish you all luck in your journeys, and thanks so much again!

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Glad your slowly figgering it all out. Like I said treatment the same if fibro or hyper. I've been struggling for so long that I thought as long as I'm getting help and support I'm holding my hands up n not caring about the correct diagnosis what does it matter. Same outcome. My only worry now is that I'm still off sick can get stat sick pay till July if I need it. But the job I do isn't ideal if you suffer such problems. So I need to find a new normal but what is that? No flipping idea right now. One thing I do know is that for the first time in my life I'm being selfish and putting me first. I need time not to be at work and to work on my wellbeing. Maybe that's something you should consider. Good luck

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