A recent email reminded me of an issue often neglected or misunderstood by people with MS (PWMS) – pain. In 1993, when I was diagnosed, there were still some medical professionals who said MS does not cause pain. Today, fortunately, neurologists and other physicians are accepting the nasty truth that it does. MS does cause pain directly, indirectly, and sometimes very subtly.
Most directly, MS pain is a result of damaged neurons which interfere with the communication between the body and the various pain centers in the brain. All areas of the body are connected to the brain by long neurons covered with a myelin sheath. In MS the myelin sheath, which works like the insulation on electrical wires, is attacked by the body’s immune system causing the malfunction nerve cells to which they are connected. People with MS can get pain because signals do not arrive from the body to where they are expected in the brain. In the same way pain can result when signals from the brain may not make it to parts of the body.
Faulty signals to and from the brain can cause pain in ways best illustrated by phantom limb pain — the pain amputees experience in the missing limb. While there is no arm or leg to experience pain in phantom limb pain, the brain may interpret the absence of any signals from the missing limb as pain. Because MS damage may similarly prevent the brain from getting a proper signal, the brain can interpret this as pain. This is also how neuralgias occur — the brain doesn’t get the information it expects and interprets the absence as something that is not really happening – burning, itching, numbness or pain.
Similarly, the faulty signals can instruct muscles to act in ways that cause pain, tightening up either steadily (spasticity) or suddenly (spasms). The misfiring or absence of a calming signal from the brain can allow pain to persist or grow. Sometimes the absence of these calming signals from the brain can allow the pain receptors to get hyper-sensitized so that even the smallest sensation may be experienced as painful. People with MS have also reported this affect with sensations of touch and temperature. This is the opposite of having no feeling at all. As with every other MS symptom, this kind of pain can become worse during an exacerbation, when fatigued (fatigue exacerbation), or when overheated.
Pain of this sort is treated with both medication and pain management techniques. Physicians often prescribe Baclofen or Neurontin among many other medications. Tylenol or another over-the-counter pain killers might be all that is needed. At other times, or for other people, even prescription medications may not be completely effective. For this reason, it is important for PWMS to work patiently with a professional to find the most effective approach.
Techniques that don’t involve medication include massage, acupuncture and other kinds of body work. There is both experimental and anecdotal evidence that they may reduce pain. Physical therapy can also effectively reduce pain when the pain results from damaged or de-conditioned soft tissue. Fatigue management is particularly helpful for pain caused by malfunctioning neurons. Since it seems that some MS impaired systems work better when rested than they do after exertion, keeping optimally rested can help. Going beyond the sensitive threshold of “too much” for a PWMS often results in increased discomfort.
A second way pain can be worse for PWMS is over-worked muscles. If the signals from the nervous system are inefficient, muscles may not tense and loosen in sync. This can mean that more effort is required during a simple motion then if everything was coordinated. Similarly, if there is one muscle in a muscle group that is not getting activated, the other muscles have to overcompensate. Either way, it can cause pain.
Treatments for this kind of pain are the same as for anyone else – heat (as tolerable) and ice; OTC pain relievers as pills or ointments; and more intensive attention from professionals as needed. Medications for neurological pain will not be effective in this situation.
MS can also lower the pain threshold so that people with MS are more sensitive to pain. This is subtle and takes some explanation.
The healthy brain works in the background juggling multiple signals, suppressing some and bringing others to conscious attention. The sensation of pain is managed in this automatic multitasking system. The body sends constant signals to the brain. Some involve motion, others touch, others heat and cold. Some are signals of pain. The brain avoids bringing these signals to the forefront of attention until they are strong enough to cross a certain threshold. Pain signals have to be strong enough to override the brain’s focus on other tasks in order to gain attention.
This is best shown in athletes. When a basketball player continues to play while hurt, she suppresses the pain and focuses on the game at hand. After the game when actual play no longer demands attention, the brain allows the pain signals to come through. During the excitement of the game, the pain sensations are ignored or suppressed, perhaps not even noticed. Throughout this time the brain is getting signals of pain, but it overrides them with signals having to do with motion, strategy, and the effort to be competitive.
With MS the capacity to multitask is reduced or sometimes eliminated altogether. In a brain that is already bypassing MS lesions and, perhaps, suppressing faulty signals coming from misfiring nerve cells, the demand to suppress or ignore pain may simply overburden the system. As a result pain sensations can become impossible to ignore. This is increased as fatigue worsens. Something as simple as background music may overload the brain’s sensory management system and may seem highly annoying, even painful. Little pains of modest or even insignificant importance can demand the same attention from the brain as deep bruises or lacerations.
Paying attention to pain and pain management are important factors in the care of people with MS. For most people with MS, simple things are enough to manage pain: proper fatigue management; managing stress; the use of simple pain relievers; and an increase in comfort measures such as careful stretching, massage, or other body work. For others, prescription medications or more aggressive behavioral techniques — hypnosis or a systematic program of progressive muscle relaxation — are needed. Medications are often part of the strategy for managing pain. Regardless of the level of pain, PWMS need to pay attention to it.
And to complicate matters even more, MS may be blamed for pain that comes from another cause. New pain or patterns of pain should be addressed with a professional. While chest or back pain can be MS related, it also can be caused by cardiac difficulties. Unusual bumps, bruises, and pain can be related to MS or to blood disorders. Muscle aches and pains can be arthritis or troublesome medication side effects. Pain is a signal that says “pay attention.” We should always listen to our bodies’ signals.
Pain can come directly or subtly from MS, it can be a secondary result from the difficulties of having MS or it can be a result of some other injury or problem. Regaredless of the source, it requires attention both from the people who have MS and from those who care for them.