I had an appointment with a rheumatologist this morning. It’d been about 3-1/2 years since my last visit with a rheumatologist, and my doctor thought it would be a good idea to get an updated evaluation. To make a long story short, the appointment was an utter waste of time, just as I’d feared it would be. On a positive note, the doctor wasn’t a total asshole. He was actually a pretty nice guy, but there isn’t a thing he can do to help me. Rheumatologists aren’t any better at dealing with EDS today than they were 3-1/2 years ago.
Even though he was nice and probably meant well, I still got the feeling that he didn’t quite “get” EDS. On one hand, he seemed to understand that it’s a painful condition. On the other hand, he kept trying to find other explanations for the pain, explanations that didn’t involve EDS. He never implied that my pain wasn’t real, or that it was psychological in nature, but it was obvious to me that he didn’t grasp the concept that EDS is intrinsically painful.
As far as “treatment” goes, he initially recommended physical therapy. I explained that most physical therapists (including the only one in this area who takes my insurance, and the only one my doctor trusts) won’t touch me and tell me that land-based PT is “dangerous” for me, and so I’ve been doing aquatic therapy three times a week. He nodded and told me to continue with that.
He also mentioned that with “normal” patients, sometimes he can inject medicine directly into the bothersome joints, but because of my EDS and the number of joints involved (um, all of them), he would never be willing to do that with me. He didn’t say that in a mean way, he simply explained that because of my EDS, injecting stuff into my joints would cause more harm than good. The act of injecting anything into my joint spaces would destroy what little normalcy I have, and because my tissues are abnormal to begin with, the medicines they would inject could dissolve any good tissue I do have…not to mention my tendency towards getting infections makes me a very poor candidate for the injections.
So, here I am, same as I was before. I still have EDS (one of my fears going into this appointment was that he would dispute my diagnosis, which he didn’t…not to my face, anyway), and there’s still not much we can do about it. I’m not sure why I’m so agitated by how this appointment went. I wasn’t expecting anything to come out of it because I know that most rheumatologists don’t know what to do with a patient with a connective tissue disorder.
I feel bad because my regular doctor was hoping to get something out of it. She referred me to the rheumatologist because she wanted to make sure she was doing everything she could to help me. The rheumatologist couldn’t really help me and I feel like it’s all my fault. Maybe if I’d been a better patient – an easier patient – someone would’ve been able to fix me.
Yeah, I know exactly how ridiculous and childish that sounds, but I don’t care. I know I need to put my big girl panties on and deal with it like everybody else does, and I will…I always do. Well, maybe after a nap…
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It’s not childish, and certainly NOT ridiculous. And definitely NOT your fault. I know how you mean it, and know what you mean by it. I wish people were more educated about EDS as well, and wish there was more the rheumy could do for you.
Just know I’m here if ya wanna talk some more.
I love you Soul Sister!!
One of the first docs to see my daughter was a Ruemy. He said she had Hypermobility syndrome (Haahahaha). He didn’t believe in EDS hypermobilty, BUT he wanted her to have the CT scans of her belly etc. just to be safe.
He said he didn’t believe in all the EDS sub-types etc. More docs and more problems led us to figure out what was going on. Needless to say we never went back to him.
Hang tough kid and stick with docs who can treat your current problems….eyes, heart etc. We’ve found that most of her docs have other EDS patients and do their best to help.