Hi All, So many in the community post about sleep issues that I thought I'd share this blog--copied, as usual, from my website.
As I begin this blog, I am anticipating the annoyance and frustration of those who have lupus and suffer from sleep deprivation. I share that annoyance because I, too, am sleep-challenged. However, giving up on sleep is not an option, so I do everything I can to squeeze as much sleep as possible out of my day. Some of the techniques described below help to do that.
Dr. Michael Smith, of the Johns Hopkins Behavioral Sleep Medicine Program (Baltimore, Maryland), discussed sleep issues in an interview published on the Lupus Foundation's website. Dr. Smith reports that 50-60% of people with lupus and other chronically painful conditions experience sleep deficit. This lack of sleep is more than an inconvenience, Dr. Smith explains; sleep deprivation compromises the immune system, interferes with cognition and increases symptoms of lupus such as pain, inflammation and fatigue. Chronic sleep deficit should not be ignored; it should be addressed as part of an overall treatment plan.
Sleep deficit is not limited to people who are suffering from chronic illness; Judy Garland, Elvis Presley, Michael Jackson and Anna Nicole Smith are a few celebrities whose autopsies indicated the presence of sleep medication in the bloodstream. As these well-publicized deaths reveal, sleep medication can be dangerous and, over time, loses its effectiveness. Sleep specialists suggest there are alternatives to drugs; these remedies are safer, and in the long run probably more effective. Most insurance plans (in the US) and the NHS (in the UK) cover a variety of non-medicinal treatments for insomnia. Although the NHS does not endorse hypnotherapy, studies (cited below) strongly suggest that this intervention may also be effective.
Adjusting habits which surround sleep is the first suggested intervention. Called sleep hygiene, this method may be enough of a modification for some people to find that elusive reward, a full night's sleep. If applying good sleep hygiene doesn't work, then a more structured approach to insomnia is Cognitive Behavioral Therapy.
Sleep hygiene, the first step, addresses changing sleep behaviors and the sleep environment. These are suggestions you may have heard before but they bear repeating:
* Get up at the same time every morning, even if you have not had a full night's sleep. Establishing this habit will accustom your body to a daily sleep pattern.
* Use the bed only for sleep. Most of us learned in school about Ivan Pavlov, the Russian scientist who conditioned dogs to salivate by ringing a bell every time they ate. Eventually the dogs associated the sound of a bell so strongly with eating, that all Pavlov had to do was ring the bell and even in the absence of food the dogs would salivate. That is similar to what's supposed to happen if we keep beds reserved for sleeping and nothing else. Our bodies and minds will be so used to falling asleep whenever we are in bed that we will do this automatically. (That's the theory, anyway)
* If you are in bed and sleep eludes you for more than 15 minutes, get up and leave the room. Relax in another room until you feel drowsy and go back to bed only then.
* Keep the lights dim when you are trying to get drowsy.
* If you are in pain and need to rest in the middle of the day, try to rest somewhere other than your bed. You don't want to create an association between being in pain and being in bed--this can trigger a negative response when you try to go to sleep at night.
* If you need to nap in the daytime, make sure to get up before 5 o'clock and try to keep the nap short--between 30-60 minutes. Older people (over 60) do not sleep as "efficiently" as younger people and thus may have to settle for 6 1/2 hours of solid sleep at night and a nap (not more than an hour) in the daytime. I know--I can hear fellow insomniacs groaning out there--6 1/2 hours solid sleep! If only.
If sleep hygiene measures don't alleviate sleep deprivation after a few weeks, then a sleep specialist should be consulted. Two issues that seem to interfere with sleep in lupus patients are sleep apnea and periodic limb movement. Sleep apnea, especially, can have serious medical consequences Thus it is important to find out if this is an issue and if it is, to address it.
Periodic limb movements are the result, according to Dr. Smith, of "extremely brief brain spasms". There are medicines which can address this condition (however, if you are like me, you might hesitate to take these because you tend to be sensitive to medication. In this case, as always, discuss this issue with your doctor).
In the event that both sleep hygiene measures and Cognitive Behavioral Therapy don't work, there is another possible intervention which is not endorsed by the NHS. Although the NHS states "There's...no good-quality evidence that hypnotherapy is effective", there have been studies which do seem to indicate that hypnosis can alleviate insomnia in some cases.
One study, performed at the Department of Pediatrics, University Hospital, State University of New York Upstate Medical University, concludes, "Use of hypnosis appears to facilitate efficient therapy for insomnia in school-age children" ("Hypnosis for treatment of insomnia in school age children: a retrospective chart review"). Another study, out of Israel, "Hypnotherapy in the treatment of chronic combat related PTSD patients suffering from insomnia: a randomized, Zolpidem-controlled clinical trial", compared the effectiveness of hypnotherapy to treatment with a tranquilizer. All patients in the study were suffering from post-traumatic stress disorder; their symptoms included insomnia. The results of the study showed: "There was a significant main effect of the hypnotherapy treatment with PTSD symptoms as measured by the Post Traumatic Disorder Scale. This effect was preserved at follow-up 1 month later".
Unfortunately, when it comes to hypnosis, many people just put up a sign and declare themselves hypnotists. Hypnotherapy is a form of psychotherapy and must be practiced by licensed, experienced professionals. If you are contemplating hypnotherapy as an option for insomnia treatment, get the name of a reliable, experienced practitioner from your doctor.
As I explained earlier in this article, I have sleep issues. I personally have used hypnotherapy successfully. What I find is that I have to go back from time to time for a boost, for reinforcement. Not only do these sessions help me to find sleep more easily, but they also relax me. I never consider drugs as an option for sleep--although I do, rarely, take a very modest dose of a benzodiazepine when lupus is active. This, for me, is an emergency intervention which relaxes mind and body until prednisone kicks in. Sleep is inevitably a welcome side effect of this intervention.