Chief Complaint: Exhaustion...Any Ideas???

When I was younger and yet to be diagnosed, I had my fair share awful encounters with the medical world. Doctors thought I was faking injuries and ailments, self-inflicting them, that my parents or someone around me was hurting me, that I needed to be institutionalized...the list goes on and on.

Thankfully, that's not usually the case anymore. I occasionally encounter doctors and other professionals that don't understand EDS and make insensitive comments or propose treatments that are inappropriate, but as an adult who is able to choose her own providers, I'm quite happy with my team. There is one area of exception, though.

For the past year or so, I've been exhausted. I'm not sure when my energy was zapped, but I am perpetually operating in a state of "tired"--from the moment I wake up until I go to sleep. I remember a time when I wasn't so tired; I just don't remember when it was. This was of concern to my various doctors until all the tests came back "normal." Then quite a few of them settled in to that oh-so-comfortable default position of "blame the patient." Sort of.

My neurologist said it was because I was in pain and depressed and not eating well. My rheumatologist said I didn't seem depressed but also blamed the pain. My psychiatrist agreed that I wasn't depressed and didn't know what to say about the pain. Maybe acupuncture.

Ok. I understand that chronic pain can cause depression, which can fatigue. I'm really not depressed, though. And on top of the constant fatigue, I also have crushing "attacks" where I suddenly feel completely exhausted and out-of-it, as though I've been awake for days. When these come on, [which is more likely mid-morning, late-afternoon or after being in the sun] I can barely keep my eyes open. (I think this is due to a weird ocular sensation, but it's hard to explain.) When Cam witnesses these, she can see a physical change, although she's not certain the change would be obvious to people who don't know me, besides my seeming tired.

My internist was concerned about narcolepsy, so I had a sleep study. Of course, I couldn't sleep that night--go figure. What the study did show was a complete absence of REM sleep and mildly reduced sleep efficiency. The physician reviewer attributed the lack of REM to my Fentanyl & Dilaudid and still considered the study fairly normal. I do need to have another one, including the MSLT now that I'm out of my cast.

Has anyone experienced this? What do you think? I'd love some opinions, answers and treatment suggestions...this exhaustion is what cripples me more than the pain, fusions, GERD and all other symptoms combined, if that says anything.

Thanks in advance.

*Xan

When A Doc Gets It

Of course it's been nearly 2 months since my last entry...what else is new?!

In my defense, my computer was virus-stricken during that 2 month period. It just returned to me, thanks to my Ninja-Warrior Brother-in-Law who also happens to be a PC repairman. Here's some unsolicited advice (this is my blog, after all): Back up your files, especially pictures and videos of your loved ones. I managed to recover most of what I lost, but it was no easy feat.

When I last wrote, I was not-so-patiently waiting for that darn cast to come off. I'm happy to report that it was removed as scheduled and that I've been hobbling on two feet, assisted by my trusty walking boot and forearm crutch/es for some time now. Even better, at my 2 month follow up, my ankle appeared to be solidly fused. That was great news, as solid union wasn't really expected until about 4 months. I'm all for speedy healing.

I had a milestone birthday this year (complete with a fabulous surprise party), but I'm not too broken up about it. I don't feel any older than I did last year, and despite being a mama and hobbling around like an 85 year old great-grandma, I still have difficulty seeing myself as a real adult. (College students just seem younger each year—what gives? And high schoolers—don't even get me started!) So getting older didn't bother me too much. What did bother me that day was the news Cam brought home from the hospital about my orthopedic surgeon—that he was leaving the practice and moving out of state.

I spent the rest of the day with a lump in the back of my throat. Ortho-Doc has been my only specialist up until this year. I started seeing him the year after he joined the practice here, right after he finished his fellowship. In the beginning, he was very eager to fix me, to do for my right shoulder what no one had been able to do for the left. And while he always respected my wishes when it came to treatment, to surgery, it wasn't until my first (or maybe second) right shoulder surgery failed that he began to truly understand how I ended up with a left shoulder fusion at the ripe old age of 19. Since then, he's let me make all the decisions. When I want to go the surgical route, we come up with a procedure. When I want to try injections or pain management or physical therapy, he facilitates that. In a most un-surgeonly way, he actually listens and involves me in my own treatment. The thought of having to find someone else to deal with me (especially when many surgeons don't want to touch an EDSer with a 10 foot pole) was most unsettling, especially since I'm still in need of more work on my shoulder.

Turns out all is not yet lost. When I actually went in to see Ortho-Doc, he confirmed that he is leaving the practice, but he'll only be about 2 hours away. While I've been quite spoiled over the past few years by being able to roll out of bed ½ hour before my ortho appointments, I'll take the drive if it means not having to deal with someone new! Thankfully my new insurance covers out-of-state specialists. I'm angry and eternally grateful all at once...grateful that I have doctors who are actually willing to [try to] figure me out, treat my pain, and treat me with dignity. STILL, I am angry that this disorder and the thought of losing one of the members of my “team” reduces me to an anxious mess (on my birthday, no less) and that the anxiety isn't unwarranted!

Every doctor should be like Ortho-Doc. Every doctor should “get” it, should treat patients well, involve them in their own care. I'm finding that more and more doctors are at least minimally informed about Ehlers-Danlos Syndrome and are eager to learn. I've had fewer “Oh, so you're a circus freak,” remarks recently. I think we're getting there. Still, I'm going to hold on to the good ones I have!

Be well!

*Xan