Ehlers-Danlos Syndrome strikes again

I had an MRI recently on my hips. There was a choice of either the knees or the hips, as I’d complained about pain in both areas to my rheumatologist. I chose the hips, because they’d been painful for longer. Results showed that the cartilage in the hip sockets is ‘frayed’. This explains the agonising pain I’ve been experiencing for the past few months. It turns out that my hip joints go into the sockets at a different angle than other people. Why? Because of Ehlers-Danlos Syndrome, a genetic connective tissue disorder. My worst fear had been that the pain was due to rheumatoid disease/arthritis, so I should be relieved. The news came as a real surprise. It seems that erosive joint damage caused by RD only affects my hands and wrists at the moment, which is not what I’d expected at all. However, it does confirm that Ehlers-Danlos Syndrome is arguably just as serious for me as rheumatoid disease.

How can I prevent my hips deteriorating? Physiotherapy is the suggested way forward, as surgery is always the last resort where EDS is concerned. Poor healing skin and excessive bleeding are two reasons why I’m reluctant to choose surgery. Another reason is previous operations on my feet have not been entirely successful. Perhaps all the training I did for the fundraising ‘Superhero 5km walk’ several months ago contributed to this problem. On the other hand, it could have happened anyway. At least I know what it is and what to do about it which is all that matters.

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4 thoughts on “Ehlers-Danlos Syndrome strikes again

  1. So sorry to hear that EDS is affecting your hips, but glad RA isn’t troubling you as much. Knowing what you’re dealing with is the first step toward addressing the problem. I hope things improve for you with physiotherapy. Sending you good thoughts.

    • Thanks Irma. Hope you are doing ok at the moment. It’s hard to know sometimes which problems are due to RA and which are due to EDS, but good to have access to modern diagnostic tests. RA definitely affects me in terms of chronic fatigue and joint pain but there’s an overlap with EDS symptoms. I’ll see how I get on with physio. Thanks again.

  2. I’ve been having increasing trouble with my hips lately too, but not as bad as you have. Still, my right hip can get bad enough to make walking really unpleasant. Because walking is my main activity, exercise, therapy and enjoyment these days, I’m heartbroken at the thought of losing the ability to do it (like my mom finally did in her 70’s).

    I’m wondering if it’s related to my gradually flattened low back. From scrunching my pelvis due to back pain, I think I’ve undone my low back curvature, and this would definitely cause a misalignment in my hips. But how to fix that, when it took a couple of decades to get it this way?

    Is Physiotherapy the same as “physical therapy”? I’ve tried many, but they were helpless with me and several made it worse – with me helping by overdoing it 🙂

    We EDS-era are in a double bind: we need to stress our muscles to keep them strong to hold our joints together, yet the muscles pull on the joints in the process, which can cause them to sublux. There’s such a fine line between benefit and damage and my tendency is always to push too hard. Maybe someday, in the far distant future, the resulting pain will finally teach me to take it easy…

    Naw, the only way for me to take it easy is if I’m exhausted and plopped on the couch 🙂

    • Hi Zyp, thanks for your comments. Agree, it’s a tough one, hip pain and EDS, especially when it comes to walking when you’re constantly aware of it with every step. Yes, Physiotherapy is the same thing as physical therapy. I’ve had the same problem with it actually making things worse, as I tend to overextend when doing the exercises, as much as I try not to 🙂 In some ways, hydrotherapy has been more effective for me (like physio, but in the pool). Also tried a special Pilates class that was mainly for EDS-ers – which was great – as the person leading the class could tailor the exercises to us and focus on things like improving core stability. Know what you mean about taking it easy 🙂

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