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

Feeling Foggy

The past 10 days have been a blur. This is probably a good thing.

As far as I know, surgery went well. My post-op appointment with John, the Physician's Assistant at my ortho's office, was largely spent discussing my pain and the cellulitis I'd developed near my surgical site. I have the misfortune of having very sensitive skin, one of my sensitivities being to medical tape, including Tegaderm. As a result, several large blisters formed under the dressing covering the incision on my hip. (I shall save you any more gory details. Long story short—this led to an unpleasant infection.) I left the appointment with a prescription for antibiotics, a stronger dose of the Fentanyl patch I've been using and for muscle relaxants. Since my surgery, I've had awful spasms in both limbs. My leg is worst at night and seems to encourage my left, currently uninjured leg to join the fun. At one point last week I was shaking so badly I was concerned I might be seizing, but my mostly intact mental functions seemed to rule this out.

The cellulitis has improved significantly since starting the antibiotic, so I am less worried about readmission to the hospital. Since the increase in Fentanyl, my pain is quite manageable, as long as I don't overexert myself. This is easier in theory than practice, although Cam has been a rockstar as far as caring for the children is concerned.

(She's so fast! By the time I've managed to hobble down the stairs each morning, she's medicated Puggles, dressed 1 or 2 of the boys, started coffee and breakfast...I just don't know how anyone can move so quickly in the morning.)

But back to the blur...a few times this past week, people have brought up pieces of conversation that they allegedly had with me while I was hospitalized. (This is usually after I've asked some question that I should already know the answer to or repeated a story or that sort of thing.) An OT from the home care agency came to my house and had apparently met with me while I was inpatient—I really didn't remember her at all.

Well, it occurred to me a few days ago that I'd had possession of the laptop while hospitalized and that the hospital had free wi-fi. Yikes. I frantically checked my Facebook account for any incriminating information posted while I was slightly incapacitated—thankfully not much there. I did notice that I wrote a blog entry, which was not too shoddy given the altered state I was in.

I'd like to think that my mind is in a better place this week, but I'm struggling to find words that usually flow freely—hopefully a temporary condition and part of adjusting to a higher dose of pain medication, not a sign that my brain is turning to mush.

Cam discovered my blog, which I hadn't told her about, given its humble beginnings. She was so sweet and has proudly boasted of it to our friends and family. I've forbade her sharing the link until I've written a little more—great incentive to get my brain working again.

And on that note, time to sleep. I hope you're all having as gorgeous of weather as we are this weekend.