Life on Wheels (19 page)

Standing frames support you with a surface behind you, which generally contacts the buttocks and might extend as far as down to behind the knees or as far up as the lower back. Although it is true that there is still some pressure on them, it is much less than if you were sitting directly on them. The knees are braced in front, and another support is generally located at the abdomen. All supports are padded for the prevention of pressure sores. Some frames include adjustable footplates. Frames are available with various options, such as a desk platform for writing or reading, storage compartments, and drink holders. Some come in a range of colors.

People with very brittle bones, cardiac disorders, or significant shortening of hip and knee flexor muscles might need to avoid standing frames but might be able to work their way toward using them with stretching and therapy. You may require a prescription to purchase one, and a consultation with your physical medicine physician and therapist is recommended.

There are many reasons why a chair user might experience pain—far too many to detail here. The causes may or may not relate to your disability.

Pain is usually thought of as a message telling us something is wrong in our body. The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.”
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But a disability might involve conditions in which pain is a continuing feature. When the nervous system is affected by injury or an autoimmune event like multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS), nerve messages get mixed up. Impulses fly through the body and can be experienced as pain. In these cases, you manage and adapt to pain, rather than always thinking of it as an indicator of something to be fixed.

Pain is a very personal experience. What is unbearable to one person might be no big deal to another. Many people with disabilities experience sensations that stem from their disability, but they define those sensations as discomfort rather than pain. Other people experience their pain as more immobilizing than their physical condition.

It is your task to identify your boundaries and manage activities to minimize pain. Some people find that sitting or lying for extended periods exacerbates pain, whereas others experience greater pain when active. Extremes of either will probably increase pain. The body requires variety of movement but has limits to how much it can endure. Even sitting still involves muscular exertion and can become fatiguing. Your attitude affects your experience of pain and your ability to respond. Being overrun by fear of pain will increase it. The ability to stop and breathe can cause your pain to abate.

Stronger measures might be required to interrupt the pain if it interferes with your ability to function. This woman with SCI finds her pain from spasticity disabling:

As time progresses after an injury or disability, people tend to report less pain. Studies have shown large differences between what people report while in the hospital and what they report later in follow-up meetings with their doctor. In a 1985 study, 60% reported pain while in the hospital, compared with 17% as outpatients.
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This difference is partly explained by the lesser response of the nervous system as we age but is probably more related to our capacity to adapt. What was once frightening and uncomfortable simply becomes an accustomed sensation we don’t even notice unless we put our attention to it. This paraplegic man, 25 years after his SCI, reports:

To the degree that someone experiences greater pain over time, it is often a result of poor health maintenance, which allows urinary, gastrointestinal, skin breakdown, or other health problems to occur.

Of people with SCIs, estimates of people who experience pain range from 33% to 95%. A very small number of these people describe their pain as severe. Dr. Elliot Roth of the Rehabilitation Institute of Chicago estimates that

Most spinal cord pain develops within the first year. In a 1979 study, two thirds of people with SCIs reported onset within six months. It has been observed that those people injured by gunshot are more likely to experience chronic pain.

If pain appears significantly later after an SCI, your physician can explore the possibility of syringomyelia, the presence of fluid-filled sacs in the spinal cord. This is found in a minority of cases of late-onset pain and in only 5% of all spinal cord cases overall. For quadriplegics of level C4 and higher, syringomyelia needs to be caught early if it occurs. At that level of injury, breathing is a critical matter, possibly already assisted with a mechanical ventilator. Syringomyelia can effectively raise the injury level and further threaten respiratory function.

Syringomyelia often appears early. After an injury, testing with magnetic resonance imaging studies can be complicated if a halo vest is still being worn to stabilize the neck; however, there are halos made of metals that do not interfere with the imaging process.

There has been a correlation made between pain and intelligence— among other factors—as Dr. Roth notes in his study on pain in spinal cord injury:

Pain is hard to diagnose. Doctors do their best, but there are so many possibilities that the task is daunting. Descriptions of pain are subjective, not exact. People variously describe pain as being burning, tingling, stabbing, achy, pins and needles, numb, shooting, throbbing, cramping, freezing, stinging, or crushing. X-rays do not show soft tissue, often the source of pain. Magnetic resonance imaging studies or computerized tomography scans are expensive and sometimes uncomfortable.

The difficulty of diagnosis forces doctors to use a process of elimination. They make an informed guess of the cause and treat accordingly. If the treatment doesn’t work, they move on to the next possible theory. They will do this process conservatively, beginning with the least invasive approach. Some doctors might suggest beginning with biofeedback or self-hypnosis. Most doctors will save surgery for the last resort.

Symptoms can overlap or be misdiagnosed. Pain is sometimes referred—experienced in a different part of the body. With tissue pain, trigger points can be activated in the muscles, but the pain is usually experienced in another location. This is known as myofascial trigger point theory, and not all doctors subscribe to its concepts. Yet most doctors do understand that a disorder in one part of the body can express itself elsewhere. For example, gall bladder pain can sometimes appear as pain in the shoulder.

Doctors might not take your pain seriously. If examination and tests reveal nothing physical, they might say it’s “all in your head” and leave it for you to deal with. This was the experience of a woman with postpoliomyelitis syndrome. After feeling stable for many years, she began to experience pain:

Musculoskeletal or mechanical pain involves muscles, tendons, ligaments, or bony abnormalities. It can result from overuse. This type of pain is increasingly typical of longtime chair riders.

Muscles are generally able to recover with rest, stretching, and appropriate exercise. When tendons or bursae—fluid-filled sacs that help lubricate and cushion movement in joints—are involved, recovery can be more difficult, and chronic recurrence is more likely. There is less blood flowing to these tissues, so the body has more difficulty repairing strained cells.

Shoulder tendonitis is the most common tissue pain in longtime chair users. Chair users, particularly manual chair users, use their arms to replace the work of the legs and place an increased workload on shoulders. For those with quadriplegia, shoulder, arm, and neck pain are also common because those muscles are the only ones available to do the work once shared by muscles in the trunk. In SCI populations, studies have found rates of shoulder tendonitis as high as 31%. Another study equated shoulder pain to years of disability; it found 52% reporting pain after five years, 62% at 10 years, 72% at 15 years, and 100% at 20 years.
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Learn optimal transfer techniques to minimize tissue strain, which can produce pain. Transferring to and from your chair from different heights, over a distance, or without brakes (which requires you to grip with more force or throw yourself into the chair) is more likely to cause pain or injury over time.

Carpal tunnel syndrome is common for manual wheelers. When wheeling, the wrist is in a position of extension (bent backwards at the wrist) while applying pressure on the palm. This strains the median nerve, which travels through a narrow opening in the wrist called the carpal tunnel. Symptoms usually include tingling in the fingertips, thumb, or palm. Nerve injuries such as this—including ulnar nerve entrapment at the elbow and wrist or thoracic outlet syndrome in which nerves are compressed in the neck and shoulder—are serious and can become permanent if allowed to become advanced.

When muscles are weakened or unusable, and if a joint is limited or bone fused—as in a spinal fusion of neighboring vertebrae—more stress is placed on nearby tissues and joints. If a muscle is not doing its share, other muscles must pitch in to make up the difference, and so the risk of overuse is increased. In the same way, if a vertebra cannot move, more force is transferred to the neighboring vertebrae. Spinal fusions are common in SCI, as is the installation of metal rods to either manage scoliosis or reduce the time of acute hospitalization prior to rehab. The resulting overuse of neighboring tissues and structure becomes a source of musculoskeletal pain.

These measures will help you minimize mechanical pain:

Be active. Keep your body flexible and strong.

Move patiently and with awareness, avoiding unnecessary force, exertion, and strain.