Sleeping Beauty by Henry Meynell Rheam
One of the great incongruities of ME/CFS is that despite our bone-crushing brain-stealing fatigue, we are frequently unable to sleep. And if we do sleep, the quality of the sleep is very poor. This quickly sets up an escalating feedback loop where poor quality sleep increases fatigue and other symptoms, which in turn make it difficult to sleep.
The Institute of Medicine report found sleep problems to be so widespread and severe that they made unrefreshing sleep (“feeling as tired upon waking as before going to bed” p. 86) one of the required symptoms for diagnosis. The IOM report includes a great review of evidence of sleep disorders in ME/CFS. Back in 2014, Dr. Cindy Bateman gave a talk on sleep problems, and you can still view the slides from her talk here. Those slides describe my sleep problems to a T:
- Sleep apnea? Check.
- Too much pain and fatigue to sleep? Check.
- Orthostatic intolerance and heart rate variability? Check.
- Sleeping too much? Check.
- Difficult falling asleep? Check.
My sleep problems have changed over the last twenty years, and I’ve tried almost every treatment that Dr. Bateman described in her talk. It feels like standing on shifting sand, but over time I have found some things that work for me.*
Medications
For many years, I had difficulty falling asleep. I tried everything: relaxation techniques, benadryl, and finally escalating to prescription sleep medication. One of the challenges with medication is that insurance companies sometimes push back on long prescriptions for drugs like Ambien. You may have to spend some energy justifying the treatment in order to get coverage. I was fortunate that the medications helped my insomnia, and the side effects were tolerable. But I didn’t like sedating myself every night, and welcomed other options. What finally made a difference was adequate pain management. The medications in my pain management regimen also help with sleep, so I’ve been able to wean off the sedating drugs.
Sleep Hygiene
I want to mention this because it’s a bit of a pet peeve of mine. Doctors, especially sleep specialists, preach sleep hygiene, such as no electronics in the bedroom, only using your bed for sleep and sex, and so on. It drives me crazy. Even during my BEST times with this illness, I have spent many waking hours in bed. When a doctor asked me why I go to bed by 7pm, I just stared at her for a moment before saying “Because it’s the only place I can get comfortable and rest.” Where exactly do doctors think we should spend our time? Do you tell someone with the flu that they shouldn’t go to bed until they are ready to fall asleep? I do understand the thinking behind sleep hygiene, and I think we should try to be out of bed if we can. But only if we can. Normal sleep hygiene recommendations simply do not apply to ME/CFS. Ok, rant over.
Sleep Apnea
I was diagnosed with mild sleep apnea a few years into my illness. But my skin was too sensitive to tolerate the silicone mask of a CPAP machine – my skin just sloughed off where the mask touched – so I had to abandon treatment. I was evaluated again a few years ago, and the sleep apnea was significantly worse. There are now cloth masks with no silicone or plastic touching the skin, so I agreed to try CPAP again. I was amazed to find that it helped!
Treating the sleep apnea (and eliminating the many mini-awakenings during sleep) has improved the quality of my sleep, and now I need less of it. Before, I needed at least 10 hours of sleep a night or naps were guaranteed, and I still woke up feeling awful. Now, I can sleep 8 to 9 hours and not need a nap (unless I’m crashing from overdoing my activity).
Important note: If you have sleep apnea, you must be treated with a CPAP machine even if it doesn’t change any symptoms because you are at higher risk of developing cardiovascular disease.
Heart Rate Treatment
After some debate and experimentation, I decided to try a beta blocker to steady my heart rate during the day. The goal was to lower my heart rate (which would allow more activity) and address orthostatic intolerance symptoms. One problem we detected after I started using a heart rate monitor is that I would have episodes of tachycardia and accompanying nausea, dizziness and weakness. This was especially common in the morning.
The beta blockers helped with all those problems – I could be a little more active, and the tachycardia episodes disappeared. What I did not expect was improvement in my sleep. The beta blockers help me fall asleep at night, and control heart rate variability during sleep. This has improved the quality of my sleep, and that has led to much better mornings.
Before/After
Before all these treatments came together, mornings were torture. I had to force myself awake, and spent half an hour in bed talking myself into getting up. For several hours, it was difficult to think. I felt nauseous and dizzy, and it was hard to function.
Once the CPAP machine and beta blockers were in place, this changed. It is still hard to get up in the morning, but it takes much less effort to get myself awake and out of bed. My theory is that these two treatments have taken a load off my heart, and improved the quality of my sleep. This has expanded my capacity activity a little bit overall. But the big difference is in my morning symptoms: I can think! I can make breakfast! I don’t feel like I’m going to pass out or die!
It is both really important and really challenging to address sleep problems in ME/CFS, particularly because there are so many variations and complications. Based on my personal experience, it takes a lot of tinkering to improve just one aspect of sleep. Even with all of these things in place, I still struggle with feeling unrefreshed when I wake up. But the incremental gains I’ve made by improving my sleep have been worth it.
*One thing I don’t discuss here is the impact of caffeine. Stay tuned for a post on my caffeine experiment.
Epic Eye Roll
“Family history of breast cancer . . .” He looked at me. I nodded.
“Chronic fatigue . . . ” He looked at me again. “You don’t look tired.” I just blinked.
“Facial flushing . . . but you don’t look flushed.” He finished the list. “Look, I just made some of these go away!” he crowed.
“If only you could do that in real life,” I retorted.
It has been years since a healthcare provider said “you don’t look tired” to me. This may be due to the fact that I have a core of providers who understand ME/CFS, and when I’ve needed new consultations as issues have emerged, I rely on those core doctors to recommend the new ones. This is the first time where the person recommended to me was on sabbatical, and I had to see the doctor covering for him.
When he said “you don’t look tired,” I basically froze. I really couldn’t believe what I was hearing. I don’t expect every doctor to have read the IOM report, or to recognize that comments about looking or feeling tired contribute to stigmatization and trivialization. But this doctor’s cavalier and snarky comment that I don’t look tired felt like a cold slap in the face.
I tried to banter with him for the rest of the appointment, joking with him and also asking pointed questions. When he asked why I have a cane, I explained that I use it for stability as I get tired and weak and that it also prevents people from insulting me when I use my disabled parking placard. He expressed surprise, so I told him that people have told me that I don’t look disabled and it’s only an hour afterwards that I come up with the snappy comeback “You don’t look stupid.” He thought that was hilarious, and apparently failed to make the connection with his own “you don’t look tired” comment.
The appointment was unsatisfactory for a number of reasons, but I spent a great deal of time afterwards beating myself up. I kept thinking that I should have pushed back on the “tired” comment. I should have educated him. What if he encounters another patient with CFS on his or her chart? And I felt unheard, stigmatized and insulted.
My husband had a much more succinct reaction. He said, “F*** that guy. It’s not your job to educate doctors. He’s an idiot and so we’ll find you someone else. F*** that guy.”
He’s right. There’s no point in agonizing over this doctor and his ignorance. My responsibility is to myself and my own health. It is not worth the energy to try and educate this doctor, and it probably wouldn’t help anyway. This doctor wasn’t open to new information coming from a patient like me. He didn’t see me as an equal, or someone who might have knowledge that he does not. Better to cut my losses and move on.
For so long, we have born the burden of educating healthcare providers because the institutions that usually do that have failed to put accurate and useful information in their hands. That’s one reason why the IOM report recommended that the Department of Health and Human Services revise its educational materials (an effort that is currently underway at CDC).
But it shouldn’t be this way. We deserve respect and knowledgeable healthcare providers. We deserve doctors who are willing to learn, and who treat our experiences as valuable data.
So you think I don’t look tired? Cue the epic eye roll.