Sleep, Pain and Peace of Mind

[Guest guest]

.... New Mobility Magazine, geared toward people who have serious mobility

issues such as para/quadriplegia... the abbreviation SCI stands for Spinal

Cord Injury and MS stands for Multiple Sclerosis.

===============================================

Sleep, Pain and Peace of Mind

By Tim Gilmer

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.

------------------

" All I know is that when I don't sleep I hurt more, do less, think stupidly

and wear out faster. "

--Barry Corbet, spinal cord injury patient

--------------------

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 , 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, 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. "

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 .

" 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 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 " ? 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

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.

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. " -- 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 [www.lidoderm.com] that I apply to my chest and sides.

These have

been miraculous at relieving the pain there. " --Marc s, 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

, 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. " -- 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. "

-- 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. " -- 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. " -- Lathrop, 39, osteogenesis

imperfecta.

Sleep Resources

? National Sleep Foundation, 202/347-3471; www.sleepfoundation.org.

? MaxiFloat by BG Industries, 800/822-8288; www.bgind.com.

? ROHO mattress overlay, 800/851-3449; www.rohoinc.com.

? Geo-Matt by Span America, 800/888-6752; www.spanamerica.com.

? Tempur-Pedic, www.tempurpedic.com (see Yellow Pages for dealers).

? SAM by Comfort Direct, 800/952-7844; www.comfortdirect.com.

? Novaform by Sleep Innovations, (available online at www.costco.com).

? ZoneAire, Clinitron by Hill-rom, 800/445-3730; www.hill-rom.com/USA.

? MicroAIR Turn-Q by Invacare, 800/333-6900; www.invacare.com.

? Stimulite honeycomb overlay by Supracor, 408/432-1616; www.supracor.com.

? Bi-Wave Plus by Pegasus, 800/443-4325; www.pegasus-uk.com.

? EASE alternating pressure overlay, 866/376-1878; www.easecushion.com.

? Waterbeds (numerous locations; try 866/805-0120; www.waterbed.com).

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