I don’t remember how much I talked about it back then, but 5 years ago, as we were waiting to see Dr. Tinkle to get a diagnosis of EDS, Emily rolled her foot and ended up with RSD.
(Reflex Sympathetic Dystrophy (also called CRPS, Chronic Regional Pain Syndrome) is an extremely painful condition where the body interprets every sensation – even harmless ones – as excruciatingly painful. The best description is that your limbs feel like they are filled with lighter fluid and have been set on fire. It is rated as the most painful condition, higher than cutting your finger off and unprepared, non-medicated first time childbirth. It typically starts after a relatively minor injury and can be in one limb or travel to the entire body. It is difficult to treat, if only because it is poorly understood.)
We were very fortunate to get a diagnosis quickly and were able to start desensitization to get it under control. Then, one evening as we were doing a desensitization technique, it went away as quickly as it started. Almost as if a switch had been thrown then turned off. Sometimes when she re-injures that foot, the RSD wants to creep back in but we have been able to fight it off all these years…
Then, a few weeks ago, Emily dislocated her shoulder. Within a couple weeks, the RSD pain (it is very distinct and Emily easily differentiates between it and her other layers of pain) had started in that shoulder. Then, within days it traveled down her arm to her fingers. Then it spread to her other arm, from shoulder to fingers. Then it went to both legs: the pain goes from the tips of her toes to above her knees – some days it is up to her hips. In the last week or so, it started in her face and in her scalp. So, now she has full body CRPS/RSD – basically the nightmare scenario. It is crucial to get it diagnosed and treated as quickly as possible for the best chance of remission.
Unfortunately, she is already on several meds used to treat it and they are obviously not helping. The upside of that means we probably won’t have to waste time trialing meds that probably wouldn’t help anyway. The downside is that our treatments options are now in the next category, which is a lot more complicated.
We got in to her pain doctor and he was less than helpful. I think it was just so far beyond him or maybe we caught him off guard but he didn’t exactly rise to the occasion. He started out offering her oxycodone, which A) probably wouldn’t help anyway and B) is not a step we were thrilled about. Then, somehow, he switched horses mid conversation and convinced himself this was just an EDS flare and suggested just keeping on with her current med regimen. Because, and I quote, “If it isn’t broke, don’t fix it.” Even when I pointed out that “it” is indeed broke and in dire need of fixing, he hunkered down and stuck with this Just-an-EDS-flare-that-will-pass idea. The only constructive idea he had was to increase her Lyrica. And he supported the idea of going to Cincinnati Children’s for treatment, mainly, I think because he just didn’t want to deal with it. Which works out well because, turns out, I really don’t want him to deal with it. Not with that attitude.
I have been back and forth with the geneticist’s office about this this past week. It was a shoulder dislocation that started this up and if it is connected with EDS, BCMH should cover it, so I need them to refer us for treatment or I would have just made an appointment myself. It took them abnormally long to respond so we have been waiting all week with a sense that the clock is ticking precious time away. Since those conversations are a work in progress and more complicated than I would like, I think I will save it for another post. Hopefully by this afternoon or tomorrow we will have a better idea of the direction we are going for treatment and I will post about that when I know more.
So, after a couple relatively quiet years, we are back on the roller coaster. And, I may have mentioned previously a time or two, I really don’t like roller coasters!