• Difficult to judge
  
• Tissue pain
  
• Visceral or abdominal pain
  
• Neuropathic pain
  
• Pain management
  

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.¹

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 or 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.

I had a lot of pain the first couple of years after my spinal cord injury. I don't know exactly what it was. No one could tell me. It was in my back. I think it was because the bones were fusing. One day a friend said to me, "You haven't complained about your back hurting for days." It was just gone all of a sudden. I thought I would always be in pain because of my injury.

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 define those sensations as discomfort rather than pain. Other people experience pain more disabling 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, while 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 abate pain.

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:

More than spasticity, the pain has limited me socially. I had to quit a part-time job because I cannot sit for eight hours a day (the pain is usually worse in the buttocks, aggravated by sitting). I have often said that the pain is the real disability, not so much the paralysis.

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 percent reported pain while in the hospital compared to 17 percent as outpatients.² This difference is partly explained by the lesser response of the nervous system as we age, but probably more so by 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, twenty-five years after his spinal cord injury, reports:

I have a strong tingling in my legs and feet that feels like I have been shot with a lot of Novocain, like the dentist uses. But I'm not even aware of it unless I think of it. I know that anybody else feeling what I do in my legs would be very upset and scared by it. To me it's just normal.

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 spinal cord injuries, estimates of people who experience pain range from 33 to 95 percent. A very small number of these people describe their pain as severe. Dr. Elliot Roth of the Rehabilitation Institute of Chicago estimates that:

Between one third to one half of all people with SCI have pain and about 10 percent to 20 percent of all patients have severe, disabling pain. Only about 5 percent of them or less undergo surgery for pain.³

Most spinal cord pain develops within the first year. In a 1979 study, two thirds of people with spinal cord injury 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 a spinal cord injury, 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 percent 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 ventilator. Syringomyelia can effectively raise the injury level and further threaten respiratory function.

Syringomyelia often appears early. After an injury, testing with MRI 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, "Pain in Spinal Cord Injury":

Interference with daily activities by the pain tended to occur in patients who were older, of higher intelligence, more depressed, experiencing greater levels of distress, and involved with more negative psychosocial environments.⁴

Difficult to judge

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. MRI or CAT scan tests 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 post-poliomyelitis syndrome. After feeling stable for many years, she began to experience pain:

I have been reluctant to talk to my doctor about my muscle pains, because every time I go, she insists that it is merely a muscle pull or tendinitis. I have gone to her so much about these "muscle pains" she thinks I am a hypochondriac and refuses to believe that post-polio even exists!

Tissue 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 which 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 tendinitis is the most common tissue pain in longtime chair users. Chair users, particularly manual chair users, use their arms to replace the work of legs and place an increased workload on shoulders. For quadriplegics, 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 spinal cord injury populations, studies have found rates of shoulder tendinitis as high as 31 percent. Another study equated shoulder pain to years of disability; it found 52 percent reporting pain after five years, 62 percent at ten years, 72 percent at fifteen years, and 100 percent at twenty years.⁵

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) are more likely to cause pain or injury.

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 be 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 next vertebrae. Spinal fusions are common in spinal cord injury, as are 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.
• Design exercises that do not stress tissues.
• Reduce stress in your environment--the spring tension in doors, the weight of objects, an incorrect or poorly maintained wheelchair, etc.
• Adjust the wheelchair for optimal propulsion, keep tires inflated, etc.

Visceral or abdominal pain

Visceral (deep) pain is equated with abdominal pain. It can be caused by bladder and kidney infections, bowel constipation and impaction, peptic ulcers, gall bladder or kidney stones. Sweating, changes in blood pressure, or increased spasticity are often associated with visceral pain and pressure sores.

When control of the abdominal muscles is lost, internal organs have a weakened support structure. The lack of support can stress kidneys, bladder, stomach, etc. Initial sensations, such as spasticity, nausea, or fever, might not be perceived or could be mistaken for something else, such as a urinary infection. Dr. Roth writes that, "acute abdominal catastrophes were responsible for up to 10 percent of deaths in patients with SCI" (in two reviewed studies).⁶

Spasticity in abdominal wall muscles can be very painful, and possibly mistaken for problems in internal organs. As with spasticity in general, movement or sensory stimulation might evoke the spasm. Spasms localized to the abdomen could indicate a deeper, systemic problem. Your physician should first attempt to rule out spasticity as the cause of pain before settling on a diagnosis of a deeper organ disorder.

Most visceral pain involves constipation and impaction, which can be experienced as a feeling of fullness or bloatedness. Keeping a regular bowel program helps your doctor diagnose pain. Your doctor can more easily rule out the bowels and determine the source of your pain sooner, avoiding the chance of a problem escalating into a life-threatening emergency.

Neuropathic pain

Many disabilities affect the nervous system. Pathways that generate and carry messages of pain are functionally impaired; pain signals can result from sensory confusion in the body. Spasticity is an example of how the nervous system gets caught in a loop, with muscle impulses bouncing around in muscles because the brain can't turn them off. Sensory signals are thought to be capable of behaving in a similar way. "Phantom" pain, experienced by people with amputation, is a case in point. The limb is no longer there, but the sensory system still thinks it is and continues to generate sensations which seem to come from the missing limb. Pain from brain and spinal cord conditions seem to share some of the mechanisms related to phantom pain.

Pain can signal that something is going on in the body that merits attention, just as muscle spasms can signal infection, a full bladder, or other conditions:

I don't experience spasmodic muscle contractions, but when I have an infection, or a sore, or even the flu or a cold, there is a spot on my right thigh that will spasm with pain. Sometimes it is just like someone plunging a knife into my leg. The spasms only last for seconds at a time, but if I am really sick, it can happen many times an hour and is really exhausting. I have learned to pay attention very early if I feel the smaller shocks that usually appear at first. Sometimes it just means I've been sitting too long.

The same therapies used to manage muscle spasticity often help with pain, although doctors can't always explain why. The drug 4-Aminopyridine is presently in tests as a method of increasing function for people with spinal cord injury and multiple sclerosis. It helps by amplifying nerve impulses past areas of myelin damage, the material which insulates nerves. Researchers were surprised to find that a drug that increases nerve impulses also helped to temper muscle and sensory spasticity in some people.

Pain management

Pain management demands a good working relationship with your physician to develop the best strategy. Physicians can't magically identify the exact cause and make it go away. Dr. Roth, writing for other spinal cord physicians, states:

Successful treatment of pain relies heavily on the patience, cooperation, collaboration, and ingenuity of the patient and the professional alike. This means that active listening and taking complaints seriously are keys to successful diagnosis and management.⁷

The least invasive approach to manage pain is always preferred. Start with an active lifestyle--even if it is only performing regular range-of-motion exercises with an assistant, or alternating time in and out of your wheels as you're able--and maintain a healthy diet. Avoid factors that cause pain, such as infections, sores, or bladder and bowel disorders. Don't abuse alcohol, drugs, or tobacco. These things might seem like a source of relief from your pain, but in the long term they only aggravate it.

People are increasingly exploring what are called alternative (or complementary or holistic) measures to manage pain.

Emotions have a great impact on pain and don't have to be treated with drugs. Dr. Roth writes:

Emotional well-being appears to exert a great positive effect on pain relief. Psychological stress, hostility, anxiety, or depression may precipitate or exacerbate pain.⁸

Fostering friendships, having satisfying activities, getting out into the world, or watching a funny movie can play important roles in your health. They help keep you out of pain. They help you remain focused on the external rather than dwelling on the internal.

Biofeedback is a method in which electrodes are placed on your head to read brain waves. A readout of brain activity appears on a meter or a computer screen. By relaxing and noticing the effects of your thoughts and breathing on brain-wave activity, you can learn to control stress and muscular tension. Biofeedback training allows you to take these skills into your daily life, using what you learned while using the machine.

In the film Mask, a young man has a disfiguring disease which sometimes puts great pressure on his brain and spine, causing great pain. His solution is to visualize a beautiful place and describe it in detail, closing his eyes and breathing deeply. Although this example is fictional, visualization is a valid pain management technique.

This woman found benefits in acupressure, a form of massage therapy that uses some of the same theories as Chinese acupuncture:

I never believed in acupressure. My fiancé took a course in it before I met him. He did the acupressure and it worked. For the first time in fifteen years I was pain-free. I can't tell you how much massage and getting the blood to flow makes a difference. I can't move at times. I lay down and he does his thing and I am pain-free the rest of the day. My problem has been insurance and doctors not believing me.

There has been much interest in electrical stimulation as a means of pain management. TENS--transcutaneous electrical nerve stimulation--stimulates peripheral nerves and has the effect of diminishing pain. A TENS unit can be used at home without skilled assistance, after it has been set up by a therapist or trained professional and explained to you. It is a small unit--the size of a transistor radio--with electrodes which are applied to the surface of the skin. Its effect is temporary, but a 1977 study of seven quadriplegics and thirty-two paraplegics showed that half of them found complete or nearly complete relief with TENS. Another 41 percent had moderate relief. TENS was more effective with musculoskeletal pain. Pain rooted closer to the spinal cord or brain did not respond as well.⁹

Strong pain elicits strong emotions, and at some point you need a break. If you are disabled by pain, if it interrupts your sleep cycle, prevents you from being able to maintain your health with exercise and activity, then it might make sense to cautiously and carefully employ drugs to manage your pain.

Many drugs are used to manage pain. Some of them have significant side effects, such as reducing your sexual impulses. Many pain drugs are also sedatives which will affect your clarity, cause constipation, affect your appetite, and so on. A pain medication could interact badly with a drug you are taking for another reason. Drugs should be used only when their value outweighs the side effects. Any prescribing physician should know all of the drugs you take.

The body has a way of adapting to drugs. After a while you might need a larger dose, or the drug might not work at all.

The last resort to treating pain is surgery. The dorsal rhizotomy is a procedure to cut nerves to simply turn off the pain impulse. More extreme is surgery to cut the spinal cord below the level of injury. This procedure is known as a cordotomy. Since it obviously can't be reversed, it would be performed in only the most severe cases. If injury to the spinal cord was not complete before the surgery, some function or useful sensation could be lost after the surgery.

Success rates are not high with these surgical procedures. Studies have found only half of people who underwent cordotomy experienced permanent relief. The percentage was 65 percent for people who had dorsal rhizotomy.¹⁰

Notes:

1. The International Association for the Study of Pain, www.halcyon.com/iasp/terms-p.html#Pain.

2. Elliot J. Roth, M.D., "Pain Management Strategies," in Spinal Cord Injury: Medical Management and Rehabilitation, 145.

3. Roth, "Pain Management Strategies," 159.

4. Roth, "Pain Management Strategies," 159.

5. Roth, "Pain Management Strategies," 151.

6. Roth, "Pain Management Strategies," 153.

7. Roth, "Pain Management Strategies," 159.

8. Roth, "Pain Management Strategies," 159.

9. Roth, "Pain Management Strategies," 163.

10. Roth, "Pain Management Strategies," 163.