I am shattered! I mean completely bone tired with friends visiting from Idaho, fixing my broken car, oh, and my rheumatology appointment! So this won’t be a long post, but I really can’t go without writing something today, because I was officially diagnosed today. It’s official now:
Ehlers-Danlos Sydrome, Type III, complicated by Fibromyalgia
(EDS type 3, by the way, is the same thing as hypermobility type; it’s just an older classification system that some doctors still like to use.)
As many with EDS say, “today, I got my stripes! I’m officially a zebra.” Looks like I’m part of the herd.
Now I suppose I am supposed to be all sad with finding out for sure I have an incurable disorder, but I’m pleased. This has been such a validating day! This doctor was respectful, listened well, and as we spoke I could see she understood what she was talking about. It felt so good to have her take a very thorough assessment and physical examination, and to have her say I’ve been right and have her share ideas about my future was really refreshing.
The bad news was talking about how there’s really nothing at this point that was going to take this away, and the reality was at this point, I’ll likely have to learn to live with a certain amount of pain and work on some acceptance of that. We discussed pain medications, and before I’d even told her much of my suspicions that the normal pain meds the doctors have been giving me weren’t helping anything, she said “traditional painkillers probably won’t work for you at all. They don’t tend to help people many with EDS much.” Ah! She gets it! Relief–this is the reason I’ve been waiting to discuss pain medication until after I’d seen her. We discussed five or six medications that are often used for those types of pain, but we also discussed how many of them are problematic at the stage I am in right now, working with young children to care for while they have side effects like serious fatigue, weight gain, memory problems, etc. So we settled on trying a low dose of Amitriptyline initially (a trycyclic, which is also used for pain relief) and she’s sending the recommendations to my GP of the other medications that may be useful at some point, should we choose to use them.
I won’t continue to be seen by her in the hospital, which is a bit of a shame, but my case isn’t as severe as many, and my GP can consult with her if needed.
She is also referring me to an occupational therapist to work on adapting how I do things to better work with my condition, and I’ve been referred to hydrotherapy as well. Part of me wants to discuss the fibromyalgia addition, as that’s an interesting discussion we had about the debate and lack of consensus of the role of fibro in EDS diagnosis, but I just can’t keep my eyes open anymore.
I had to come on though to mark this day. I know it probably won’t actually change a lot–there’s no cure yet. I was already doing many of the things that she’s talked about, but maybe it will help my children be better understood, and I can fight for them to get support when they need it too now. This is a good day!