Ehlers-Danlos mama trying not to twist things up *too* much!

Friday, July 15, 2011

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.



  1. I don't have an answer I am afraid but having EDS I totally empathise and am the same regarding exhaustion. A lot say its because our sleep is non restorative so we basically wake up more often than not more tired than we went to sleep. I am really intolerant of heat these days, and can suddenly be so overwhelmed with exhaustion I have to sleep right then. I have tried looking at my medication everything. Perhaps its POTS (autonomyic dysfunction) causing more problems of late perhaps? With that more salt in the diet is considered helpful and the obvious but boring stay hydrated which is so often said. I am just stopping by really to say, I know how you feel.

  2. Thanks Achelois. It really does help to know that I'm not the only one out there. And as often as I'm told, I haven't been great about keeping up with extra fluids in the heat, which I'm sure isn't helping the situation.

  3. I've struggled with this for years, most of my 30's; all of my life I've sleep and exhaustion issues, but during my 30's there would be periods I could barely function. This was before I knew about EDS, before the Dysautonomia was almost crippiling, PLMD, apnea, and all the rest. I took Provigil and then Nuvigil for a year or two and it helped some not to have the crippling exhaustion, but I never really felt awake. The thing that made the biggest change for me came from my Neurologist after I was diagnosed with Dysautonomia; Alpha Lipoic Acid. It was a month or so into my titration when I started noticing that I fell asleep easier, slept harder (only time I've noticed waking up in the same position I fell asleep in), and was actually awake during the day. My worst days now are like my good days on Nuvigil. It is so sad to hear your kids reflecting on their childhood and refer to points in time as when 'mom was hibernating'.