Photo by Christopher Voelker

According to a recent National Sleep Foundation poll, 42 million Americans say pain or physical discomfort disrupts their sleep at least a few nights per week. As if dealing with pain isn’t enough, consider the consequences of poor sleep: impaired energy and mood, problems with alertness, increased risk of injury, accidents, and poor health. Extreme insomnia can even lead to psychosis.

At the age of 20, I discovered a world of unseen sleep demons in rehab. Enemy number one: the Stryker frame. A better contraption for tortuous sleep has yet to be invented. Call it a human rotisserie. Every two hours an orderly grabbed the rotisserie handle and cranked, wrenching every bone and sinew in my body. Goodbye sleep, hello pain. Eventually I escaped the Stryker frame, but–like most SCI survivors–I continued turning in bed every two hours to prevent pressure sores. Not exactly conducive to uninterrupted sleep.

Add to that spasticity and the mix of tingling, burning, freezing sensations that range up and down our bodies, not to mention subconscious worry about incontinence, and it’s no wonder we’re prone to sleepless nights.

MSers cope with many of the same secondary complications as SCI survivors, and then some. Post polio, osteogenesis imperfecta, cerebral palsy, muscular dystrophy and arthritis all have unique ways of complicating sleep with pain. Generally speaking, anyone with a physical disability pays the Sandman a heavy toll for a decent night’s sleep.

Mattress Universe
Sound sleep begins with a good mattress, and those of us who are prone to pressure sores need to choose wisely. Even if we can’t feel direct pain, referred pain can rob us of sleep just as easily. The good news is there’s a whole world of pressure-relief mattresses from which to choose.

“Mattresses are an individual thing,” says Grace Lopez, R.N., who orders mattresses for Denver’s Craig Hospital. Because funding is iffy, Craig uses “low tech stuff” whenever appropriate. Foam replacement mattresses are used most often, especially if pressure sores are not present. For both in-hospital and outpatient use, Lopez prefers the MaxiFloat, by BG Industries. But not just any foam replacement works. “You need at least 4 inches,” she says. “That’s the minimal thickness needed to get real pressure relief.”

Lopez also likes the ROHO mattress overlay. It offers good protection and requires no maintenance. What, no leaks? “That’s because when you’re sitting you have almost all your body weight concentrated on a small area,” says Lopez. “With the overlays, your weight is more evenly distributed, and there are four sections that snap together, so you can rearrange them however you want.”

Another overlay that Lopez recommends is the Geo-Matt, by Span America Medical Systems. The top of the overlay is sliced into a grid pattern consisting of hundreds of individual foam squares that absorb pressure and move independently.

What about Tempur-Pedic’s much ballyhooed “memory foam”? Lopez says she’s had good reports from outpatients using Tempur-Pedic products, but cost is a factor and Medicare has strict requirements on coverage. You need to have an open wound–a stage II or III pressure sore–to qualify. If you’re pressure-sore free, chances are you’ll have to pay out of pocket.

Since memory foam is not patented, American companies (Tempur-Pedic is based in Sweden) can manufacture and deliver a less expensive similar product. Comfort Direct advertises their self-adjusting mattress, available with a memory foam overlay, at a reduced price. Below the foam is a pad made of individual air compartments that adjust to pressure points, somewhat similar to the ROHO concept.

Since not all visco elastic (memory foam) products are precisely similar–densities can vary–it’s a good idea to try a pillow first. Sleep Innovations makes a memory foam pillow called the Novaform that is similar to Tempur-Pedic’s “Swedish neck pillow” and Comfort Direct’s “visco foam pillow.” It sells through Costco for $24.49.

Tempur-Pedic says Veterans Affairs Medical Centers across the nation use their mattresses, but Beverly Parrott, a certified orthopedic manual physical therapist and consultant to Craig Hospital, does not recommend them. “I think they are too firm,” she says. Parrott specializes in treating neck and shoulder pain outpatients at Craig. Her opinion is based on feedback from patients and her own personal experience.

Trial and Error Works
At Kessler Institute for Rehabilitation in New Jersey, SCI Unit rehab nurse Linda DeLisi and occupational therapist Cindy Nead encourage a trial-and-error approach. Each patient is given an opportunity to find their “comfort zone” with demo beds in a clinic setting. “We use a lot of low air-loss mattresses,” says DeLisi, “like the ZoneAire from Hill-Rom Services. If necessary, we sometimes update it to a Clinitron. We take pride in using top-of-the line products.”

Where aggressive pressure relief is called for, DeLisi and Nead give high marks to the MicroAir Turn Q from Invacare, a programmable alternating air pressure mattress that turns the sleeper from side to side. The system is adjustable with several different positions possible.

DeLisi stresses the need to follow Medicare/Medicaid guidelines in prescribing mattresses. She says Kessler takes great care in writing letters of medical necessity, spelling out exactly why a certain mattress is needed. Medicare guidelines are restrictive, but for good reasons. Not everyone needs an AP mattress. DeLisi says honeycomb mattresses (Stimulite overlays by Supracor) are sufficient for those who don’t already have pressure sores. Another option is a waterbed. Nead says water has the best properties for even weight distribution but is harder to work with in a clinical setting.

Pam Stockman, a registered orthopedic therapist in charge of ordering mattresses for the University of Washington Medical Center, prefers AP mattresses. “There’s a huge difference between foam and alternating pressure,” she says. For one thing, most foam products tend to build up heat–they don’t breathe easily. The combination of heat and body moisture (or incontinence) can cause skin problems, she says. Her favorite AP mattress is the Bi-Wave Plus, made by Pegasus. The Gore-Tex surface breathes, so sheets are not used.

But isn’t the pump noise associated with AP mattresses bothersome? “Yes, it can be a problem,” says Stockman, “but the Bi-Wave is quiet, and we’ve had great results with healing.” Another reason she prefers the Bi-Wave is the level of service she gets from the manufacturer.

If cost is restrictive because an outpatient cannot get coverage, a practical option is an alternating pressure overlay. Unlike the full AP mattress, which works best if placed on a hospital bed, an AP overlay has a plastic “wing” that tucks under the existing mattress. It is much more affordable. Air pumps can be rented inexpensively from local DME dealers. And if you like the feel of sheets, that’s another reason to go with an AP overlay.

While getting the right mattress can seem complicated, some basic guidelines can pay off in reducing pain during sleep. At Craig, Parrott sees problems from improper positioning. “I discourage sleeping prone,” she says, even though it is sometimes recommended for prevention or healing of pressure sores. “The nerves and joints on the side to which you rotate your head are compressed. It’s very adverse for your neck.”

Parrott recommends sleeping on your side and advises using a firm body pillow for positioning arms so as not to cause or aggravate shoulder pain. “When lying on your side, use the pillow to elevate the level of your elbow to the same level as your shoulder,” she says. “If your elbow falls down across your body, it puts too much pressure on your posterior shoulder muscles and the bundle of nerves coming from the neck.” She also advises using a small pillow between your knees when lying on your side. And medical booties are good for protecting ankles and heels.

“Firm mattresses are not good,” she says unequivocably. Not only do they put too much pressure on shoulders and hips, they are bad for proper alignment. “I advise using something softer, like an egg-crate layover.”

Peace of Mind
While choosing the right mattress is important, perception of pain can be influenced by our thinking. This is not to say that all pain can be controlled. Neuropathic pain, sometimes called central pain, is especially difficult to cope with (see p. 32). But for most us, pain waxes and wanes with our level of stress.

Richard W. Hanson, Ph.D., program director for the Chronic Pain Management Program at the Long Beach, Calif., VA Healthcare Center, writes online that stress can be physical or psychological in nature, but the effect is the same, and the results are physiological–altered hormone secretion, immune and autonomic response. “Whenever there is an acute injury,” writes Hanson, “there is obviously physical stress. However, when pain becomes chronic, psychological stressors often mount up and can directly contribute to the amount of pain that is experienced.”

Pain is magnified at night in bed. No longer preoccupied with the day’s activities, we worry about yesterday or tomorrow. The resulting anxiety causes stress, which gives rise to negative expectations and increased perception of pain. In this scenario, turning to medication can harm rather than help. Many of us have fallen into the addictive grip of painkillers and powerful sedatives in order to sleep.

Hansom recommends listening to a relaxation tape or cultivating enjoyable mental imagery. “You can use any form of enjoyable fantasies or pleasant memories, e.g., fantasies of success and recognition, exciting romantic encounters, heroic deeds, thoughts about loved ones, etc. The idea here is to do your best to prolong the enjoyable fantasy. Using a form of reverse psychology, you should actually try not to fall asleep so you can enjoy the relaxation or pleasant fantasies.”

If relaxation fails to bring sleep or dull pain, it’s OK to get out of bed and read, watch television, write, play a game. The goal is to enjoy yourself. If you happen to get sleepy, fine. If not, at least you’re doing something other than staring at the ceiling and gritting your teeth.

One final bit of sleep-wisdom: Hanson says certain activities stimulate the production of endorphin (“runner’s high”). Mental activities can also increase endorphin levels. The “placebo effect” results from positive beliefs and expectations. The practice of thinking pleasant thoughts and cultivating healthy emotions–happiness, joy, laughter and love–can go a long ways toward dulling pain and inducing sleep. So while you’re lying there, why not take Bobby McFerrin’s advice: “Don’t worry, be happy.”

From the Sleep Gallery

“I use 2-inch egg-crate foam in the upper body area of my hospital bed to prevent shoulder soreness from lying on my side. Sometimes leg pain wakes me up at night. Raising the foot of the bed helps. Sometimes my wife puts Mineral Ice on and that helps for a while.” –Richard Schwab, 60, primary progressive MS since 1984.

“I started out on an alternating pressure mattress but gave that up for a latex filled mattress–the pump was too loud and the mattress too mushy. I sleep on my side. As I’ve had a very sensitive upper torso, I stumbled across lidocaine patches

[] that I apply to my chest and sides. These have been miraculous at relieving the pain there.” –Marc Richards, 43, transverse myelitis since 1998.

“What works for me is rubbing on Tiger Balm. It relaxes my sore muscles and the smell seems to lull my senses into a sweet calm. It works best if I can get someone to massage it into the sore spots. Then I program in my perfect sleep number on my Select Comfort air bed, snuggle down with a warm cup of Sleepytime tea, click on a good flick and I’m off to dreamland.” –Ellen Stohl, 39, C8-T1 SCI since 1983.

“For spasticity I use one nightly 2-milligram dose of Tizanidine (generic Zanaflex), which seems to help. Several quads I know benefit from moderate doctor-sanctioned pot use, which reduces pain and spasticity.” –Jeff Shannon, 42, C5-6 SCI for 25 years.

“When my disease was most active, nothing helped. I supported every joint I could with pillows and tried most prescription pain meds; they didn’t touch the pain, and made me stupid besides. The only thing that worked for me was marijuana brownies. I’d never used pot recreationally. If there was more THC in my system than needed for pain, I got crazy paranoid. I’d never use it for anything but the most severe pain.” –Lisa Wilcox, 51, rheumatoid arthritis for seven years.

“All I know is that when I don’t sleep I hurt more, do less, think stupidly and wear out faster.” –Barry Corbet, T10 SCI.

“Taking a very warm shower before bed always helps, as does surrounding my back and wrapping my hands with microwavable, aroma-therapeutic heating pads. If that’s not enough, I silently repeat the Jesus prayer as a mantra.” –Victoria Beck, 52, mild cerebral palsy with complications of arthritis and wrist pain.

“I listen to books on tape and music produced directly for massage therapists (Calming Massage). I also do multiple reps of breathing exercises that I learned from Dr. Weil’s CD book Breathing: The Master Key to Self-Healing. Sounds New-Age-ish, but it helps me slow down my brain, respirations, and relax.” –Mike Murach, 36, C3-4 SCI since 1990.

“After my second baby, if I got two hours’ sleep in a row I was lucky. In my late 40s a thyroid treatment helped for 6 months–I got five hours of sleep in a row. But my pain kept increasing. At 49 my doctor slowly put me on Trazadon, which helped with sleep and depression I didn’t know I had. I built up to 300 milligrams, was put on 3 milligrams of Clomazapan and 50 milligrams of Elivil. Now I sleep like a baby (eight-nine hours), have zero pain, feel great and haven’t been sick in four years.” –Gayle Royce-Nash, 54, paralytic bulbar polio and post polio.

“I’ve been using a waterbed for 30 years and I love it. I like the old-fashioned kind, all water, with padded siderails on the wooden frame for transferring. It’s toasty warm and inexpensive ($45 online). Leaks are rare, easy to patch. The only problem is I don’t sleep well on anything but a waterbed.” –Tim Gilmer, 59, T11 SCI since 1965.

“I listen to music a lot before I fall asleep. I’ve taken 600 mg. Ibuprofen for pain and that helps, but I’d say music and positive thinking are the best medicines.” –Jacqueline Esmeijer, 29, cerebral palsy.

“Occasionally, a couple of days after a fracture, just as I’m falling asleep I’ll have a myoclonic jerk: My nerves misfire and the fractured limb, or my whole body, spasms violently, jerking me awake. Often it’s accompanied by a sensation of falling. The spasms can cause a lot of pain and make it hard to fall asleep because I’m afraid they’ll happen again. And taking pain medication seems to make them happen more often.” –Douglas Lathrop, 39, osteogenesis imperfecta.

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