Imagine catching the flu, but suffering no sore throat or body aches. Or dieting without feeling hunger pangs. Or getting a root canal without needing so much as a single Advil.
That’s what life is like for the rare patients with congenital insensitivity to pain — they feel physical pressure and other sensations, but no actual pain. While such a prospect can sound heavenly to those who suffer the occasional headache or sunburn, patients who cannot feel pain end up much more cursed than blessed. Imagine literally breaking a leg or running a high fever without realizing the need for medical attention.
Ideally, pain alerts us that something is wrong and can spur us to action. An inability to feel pain can cause us to do more harm without realizing it. But too much pain can have the opposite effect: It can slow us down, discourage us from being active and make us feel helpless. It’s a complex issue for any healthcare professional, and a special challenge to the seating & mobility team.
Common Causes of Pain
Many complex rehab technology clients have pain. Yet their experiences may not be similar. Different people feel discomfort in different parts of their bodies, at different levels of severity and for many different reasons.
“Contractures and muscle spasms are sources of pain,” says Amy Meyer, PT, ATP, pediatric & standing specialist for Permobil. “Pressure can definitely be a painful stimulus if someone has the sensation of pain and pressure.”
Meyer says static positioning — a lack of movement of the joints — can also contribute to pain. “It’s not only the contracture itself, but the lack of movement can cause pain as well in the joint receptors,” she notes. “I always say it’s not the position; it’s the static nature of that position. I could get you in the most comfortable position you’ve ever been in. But if you don’t move out of that for an hour or two hours or more, it’s going to become uncomfortable at some point.”
For wheelchair users, poor positioning can be a source of pain felt in many different locations, says Susan Cwiertnia, PT, MS, clinical specialist for VARILITE.
“Poor positioning creates unbalanced forces on the muscles and joints, which can lead to pain especially in the neck, shoulders and lower back, and cause pain associated with scoliosis,” she explains. “A person can develop painful nerve root compression or a herniated disc due to improper sitting. The poor positioning can even lead to increased mechanical stress in the shoulder that can result in overuse injuries with activities like transferring, propelling or joystick use.”
And poor positioning, Cwiertnia says, can be caused by vibration, which she calls an “often overlooked source of pain and discomfort for wheelchair users. In both manual and power wheelchairs, the user receives extended exposure to vibration and shock as they go across sidewalks, cobblestones and other surfaces. This whole-body vibration can decrease comfort and increase fatigue levels faster. Often when a person is fatigued, they do not sit as well, and compensate by slumping or leaning. This in turn can bring on the additional problem of poor positioning.”
Jay Doherty, OTR, ATP, clinical education manager for Pride Mobility Products, says, “Anyone who sits can be more prone to pain because of the fact that they may not have the ability to move themselves as often as we do. On average, we move about 30 times an hour — we shift our position. So if somebody doesn’t have the ability to move their position, they’re going to develop discomfort and ultimately pain more often.”
Is Pain More Common in Certain Diagnoses?
While pain varies from client to client — and can worsen and abate in the same client throughout the day — Cwiertnia says, “With certain disabilities and diseases, chronic pain is common.” She notes, for example, that clients with spinal cord injuries may have pain “related to the damage or dysfunction of the nervous system, as in the case of central pain, due to hypermobility in the joints about a fusion or due to severe muscle spasms.” Clients with cerebral palsy often have “recurring pain due to spasticity, or scoliosis and other types of boney deformity resulting from the spasticity.”
For clients with muscular dystrophy (MD), pain “may involve delayed muscle relaxation after contraction, pain resulting from scoliosis, joint contractures and associated with surgical tendon releases for contracture management,” Cwiertnia says, while patients with multiple sclerosis (MS) may have “neurogenic pain due to the injured nerves. Since the brain distorts messages carried by the damaged nerves and may interpret them as pain, MS patients get spasms causing pain.”
In general, Doherty says, “People who have lack of movement, but have full sensation — folks with ALS, some folks with MS, those types of diagnoses — are a little more prone to developing pain because they don’t have the ability to move themselves unless we provide that power positioning system.” Clients with excessive tone, he adds, “often will develop orthopedic changes over time. That can result in an increase in pain.”
Meyer says that in her experience, the patients most prone to pain were ones “with the muscular dystrophies and the neuromuscular disorders and MS, where they have very good sensation or their sensation is not affected, but their motor (abilities are) definitely affected. Those are the populations that tend to complain about pain the most because ‘I can feel that my sock is wrinkled under my foot, and I can’t do anything about it.’ With Duchenne muscular dystrophy, heightened sensitivity comes into play, and sensory integration is often affected. There’s a sensory integration disorder that goes hand in hand a lot of times with MD. So they tend to notice those things and be affected much more on an emotional level. It bothers them a lot more.”
Doherty adds that rather than just associating pain risk with specific diagnoses, providers should keep in mind that immobility can be the real culprit. “If I’m in a wheelchair and I don’t have the ability to shift my position,” he explains, “I’m going to be even more prone to developing that pain over a longer period of time, and it’s going to become more of a consistent thing that I will have to deal with when I am in my seating system.”
Understanding Pain: Where to Start?
Providers seeking to understand a client’s pain can face a number of challenges, from determining the type or extent of the pain, to pinpointing its location, to tracing its cause.
When a client mentions he’s in pain, Doherty says, “I often start with open-ended questions: ‘When does the pain start? Is it already there before you even get into your chair?’ Asking specific questions might lead me to think, OK, it’s not the seating system, or it is the seating system.” He also asks where on the body the discomfort is occurring and “Have you changed the way that you’re doing things lately?”
Meyer says she asks clients to describe their pain: “Is it like when you stretch a muscle a little too hard, and if you sit for a little bit it might feel better? Or is it like somebody’s got a knife and they’re stabbing you? Is it just kind of achy? I’ll try to use descriptor words — all the words we used to describe pain — and see if they’ll respond to any of those.”
It’s even more challenging, of course, if the client has difficulty communicating. But Meyer says there are still ways to detect pain, even if the client can’t speak. In addition to obvious signs — facial expressions, groaning, moaning or crying, for example — she says, “a tight tension in the lips and mouth indicates something might be uncomfortable — that’s if I’m putting them in a position that immediately is a discomfort. If there’s somebody who’s sitting in the same position and they’re starting to get uncomfortable because of aches and pains, and their joints are getting uncomfortable because they haven’t moved, then it may be more of a growl.”
Both Meyer and Doherty say caregivers can often provide insight into pain problems, though Doherty notes, “They may not realize they have that info, and asking probing questions can really be telltale.” For instance, parents may mention that their child is in pain toward the end of the day, but “the school team reports that he’s fine all day long. What is the change going on here then?”
Even if a client or caregiver can give a detailed description of the pain, the seating & mobility team still must figure out the root of the problem, which isn’t always obvious.
Meyer uses the example of a client with tight hamstrings: “Their knee wants to stay bent really tight into their body. So if we’re stretching that hamstring too much, not only is that going to be uncomfortable at the hamstring, but it’s also going to pull the pelvis into a more posterior tilt, which is then going to put extra pressure on the sacrum.” The result, she points out, can be a chain reaction that makes it difficult to pinpoint the true cause of the pain.
“Even with walking individuals,” Meyer points out, “foot biomechanics and lack of support at my foot can affect my knees, my hips, my low back, and up the kinetic chain. The same thing is true in a wheelchair. A lot of times with seating and positioning, we start at the pelvis. I think we need to look distally as well as proximally in assessing pain because something in the foot might be affecting the back.”
Providers, our experts said, can also assess for pressure problems, including redness areas, and postural asymmetries, such as whether the client is leaning to one side.
“With kids, I would mimic their seating system as much as I could,” Meyer says. “I would sit them in front of me on the mat and try to support their body in the position that I thought was effective, and then sit there with them. The biggest thing is letting them stay in the position and not assessing immediately by asking, ‘How does this feel?’ You can ask immediately, but let them sit there and get really relaxed in the system, and then ask how it feels after 15, 20, 30 minutes, if possible. That’s always difficult because of time constraints in the clinics. But if you can, let them sit and have a snack with dad or mom, and then come back and ask: ‘Is that still feeling OK?’ I think that’s something we neglect a lot of times. We take a quick snapshot: ‘How does this feel? OK? Good, see you later.’ And then 20 minutes later, it is really uncomfortable.”
Doherty adds, “If I took a picture of the child at the fitting, I’m going to look at the picture, and then look at how they look now. Has there been a physical change?”
Of course, the subjective nature of pain can be an additional challenge to the seating & mobility professional, Cwiertnia says.
“Pain is very real to the person that is experiencing it, and no two people are going to ever present with the same location, type and severity of pain, even though they may have the same diagnosis,” she notes. “We must remember that pain is multidimensional with a mind-body link. It has a physiological component, but it is also subjective with a psychological component.
“Non-physical factors such as culture, family, and spiritual influences may affect pain as well. All of these components require the treating clinician to utilize evaluation skills to identify in what way their seating intervention may or may not be able to impact the pain. It is even more important to get feedback from the client about their experience and keep them involved in the process.”
Strategies for Attacking Pain
Once details about the pain have been gathered — including, Cwiertnia suggests, any actions that make the pain better or worse — it’s time to create a plan of attack.
When it comes to identifying the cause of pain and making a change to alleviate it, Doherty says, “It’s not always the seating system, but the seating system is predominantly what gets blamed.” When a client reports feeling pain, one of Doherty’s responses is to ask about power positioning options.
He asks, “’When the pain occurs, do you then start using your power positioning system?’ Are they using it properly to shift their position? Quite often, I tell people if you wait until you have pain to shift your position, you’re too late. You’re already having the pain, and that pain is probably not going to go away too quickly. I tell people if changing your position helps, you need to change your position before the pain starts. Because once it starts, you’re almost too late. Not that they can’t alleviate it, but it’s harder to alleviate.”
Meyer says she’ll ask a child’s parents, “’At home, what is the most comfortable position? Where does he seem the most relaxed and not in discomfort?’ That’ll help give me some ideas of what positions are tolerated and which are not.
“’They’ll say, ‘Oh, when he’s laying in his beanbag chair.’ Then I might say, ‘I need to come up with some sort of custom mold or a Versa Form pillow that might act more like a beanbag.’” Beanbag chairs are popular, Meyer explains, “because those kids can adapt their positions easily because the beans move with them. If they have any control at all or any tone, they’re getting that movement. Or they get excited and kick their feet, and they move in the beans a little bit. So they get some micro-positioning changes. I’m not talking about full pressure-relieving tilt. But even minor changes in back angle are very important.”
Doherty says for many clients, alleviating pain requires a multi-pronged approach. “We can’t just treat pain as a seating issue. We need to talk to them about where they’re having the pain, make some changes to the seating system if we think that’s going to help alleviate it, but quite often therapeutic intervention is necessary. A therapist may look at it and say, ‘I understand where you’re having the pain, I understand that it might be coming from the seating system, but there’s also some physical changes that are going on.’ The therapist may want to put (the client) on a stretching program, a side-lying program or some sort of therapeutic program to see if they can make some physical changes to the person that may enhance their seating system as well.”
As for that seating system, Doherty says, “As an industry, I think we need to ensure that if our consumers have the ability to shift themselves, we educate them on how often they should be shifting themselves. Or if they don’t have the ability, that we provide them with a way to change their position.“
Says Meyer, “The best thing we can do, in my opinion, is support them in the most appropriate postural alignment that’s not going to compromise their functional capabilities. Sometimes we get into making their alignment so perfect, and now they can’t transfer or they can’t reach anything in the cabinet.” Ideally, she explains, “We’re not only giving them the best alignment that’s functional and appropriate for them, we’re then giving them some control to move their bodies independently, whether that be in a power wheelchair with power seat function, or in a manual wheelchair by teaching them how to do pressure relief techniques or reposition themselves. So they can still be safe and still have a decent alignment, but still get that mobility they need to change that position.”
Meyer adds that the client is “the only person who can control and manage their pain.”
The Ultimate Costs of Pain
While Cwiertnia points out that pain originally was meant to help us — “a protective mechanism to warn us that there is a problem once we are injured and to prevent us from doing anything to make the injury worse, forcing rest” — she says chronic pain “can be very debilitating and does not serve a protective function.” The costs of chronic pain can include a drop in activity, loss of sleep, and depression (see sidebar). Not to mention, Cwiertnia adds, that “If a client has pain of a mechanical nature due to their seating posture, they may try to move into an abnormal posture to get away from the pain, which could lead to progressive postural deformity. The abnormal posture can also change their body mechanics, placing more pressure and pain on the head, neck and shoulders, causing overuse syndromes.”
Given the damage it can cause — physically and emotionally — it’s natural for seating & mobility providers to want to do everything they can to help alleviate their clients’ pain. It’s also a fact that permanently alleviating all pain may not be possible.
But that doesn’t necessarily mean that pain always wins.
Doherty notes, “I’ve had people who’ve said, ‘I have this pain, I’ve lived with it a long time. I know there’s only so much you can do to alleviate it, but can we see what we can do?’ Yes, absolutely, we’re going to see what we can achieve. That’s a very reasonable expectation. It’s not going to happen overnight. In a week, I don’t expect that this pain is going to be gone altogether. I’d like to see some improvement, but it’s going to take some time.”