Coping with the Fluctuating Face of Pain when Living with MSby Lisa Emrich Patient Advocate
Multiple sclerosis is not a painful disease, right? Wrong. The pain associated with MS can vary from an occasional annoyance to a constant, excruciating distraction.
For years, it was believed that MS was a painless disease. However a systemic review of the literature discussing pain in MS revealed that almost 50% of people living with MS report having pain. Of those reporting pain, 75% of patients had experienced pain within the month prior to the assessment or survey.
If my experience had been included in one of the surveys, I would have been included in the 75% reporting recent pain. The type of pain I have is called neuropathic pain which is caused by nerve damage in the brain and/or spinal cord. When the myelin (insulation for the nerve fibers) becomes damaged, the nerve signals can become distorted and 'short circuit.' The result is unpredictable and often painful.
My neuropathic pain began with a case of shingles which emerged shortly after my first round of solumedrol in 2005. Shingles took over the left side of my face and left me with what is called post-herpetic neuralgia (PHN). However, PHN is supposed to eventually fade away. Mine never did.
Sometimes it's hard to determine what is causing the pain you might experience. My neurologist and I finally determined that my facial pain was really from nerve damage caused by MS. He prescribed a common seizure medication which thankfully worked to help alleviate the pain. I still take the same medication everyday.
Another type of pain associated with MS is musculoskeletal pain which occurs in the muscles, tendons, and ligaments around joints. This pain can be confusing and difficult to pinpoint. Some patients may even be diagnosed with tendonitis or fibromyalgia when the pain is really secondary to MS.
My first experience with musculoskeletal pain came from spasticity in my legs. Initially I thought that the pain in my knees was due to rheumatoid arthritis (with which I have also been diagnosed). Instead, the constant pulling of the calf muscles and hamstrings was putting undue stress on my knees causing tenderness, stiffness, and joint instability. It wasn't until after my neurologist prescribed a common muscle relaxer and antispastic medication that I experienced relief.
At various points in time, I have taken large amounts of the medications referenced above. However now my doses are modest and I even only use the antispastic medication 'as needed.' Specific stretches taught to me by my physical therapist (who specializes in neurological disorders) help me to control the spasticity and to recognize when my body needs medication to stop the spasms.
Living with multiple sclerosis requires learning to 'read' your body. Listen to its signals. Recognize the triggers of pain and work with your neurologist and physical therapist to get that pain under control.
Although I have a baseline level of controlled neuropathic pain, I have experienced spikes of pain which seem to come out of nowhere. Some may call this breakthrough pain.
The National Pain Foundation shares that there are three types of breakthrough pain:
Incident pain - which occurs with or following physical activity,
End-of-dose failure - which occurs in the time before you are supposed to take your next dose of medication
Spontaneous breakthrough pain - which occurs without predictable cause or frequency
With MS it can be challenging to figure out the cause of breakthrough pain. Our symptoms fluctuate often on a daily basis. The questions become: I am experiencing something new? Is this an MS exacerbation? Has my current treatment or approach stopped working? What else can I do (or take) to stop the pain? What do I need to tell my doctor?
It is important to be able to describe your pain in detail when talking to your doctor. Keep track of the timing and possible triggers of the breakthrough pain. Together you can find ways to treat and manage the pain. Being able to explain your pain also helps family and friends understand this invisible symptom of MS.
Here are just some of the words people use to describe pain: squeezing or crushing, cold, hot or burning, sharp, dull, like ants under my skin or 'creepy crawlies', like a build up of pressure, stabbing, creeping, like an electric shock, aching.
The next time you experience an unpleasant or painful sensation, tell your doctor about it during your next appointment. If you suspect that the pain is part of an exacerbation, call your doctor immediately. If the pain is a side-effect of other MS disease activity, then try to tackle the root cause. If you feel you need stronger medication (narcotics perhaps) to kill the pain, definitely talk to your doctor about working with a pain management specialist.
Please know that pain is definitely a part of living with MS. The severity ranges from mild to extreme, constant and acute. Know that you are not alone.