All I could do was stand and cry. I never cry. Or at least I try the hardest not to, especially in public. But this time it was in public, and I was crying, hard. Because I was hurting.
The pain had been coming off and on for days, but this day in particular was different. On this day it started a little stronger and earlier than normal. On this day, the pain was incredible and more intense. On this day, the pain was unbearable as it flowed around my body. It felt like waves rolling up and down my arms, leaving me totally unable and unwilling to move. I couldn’t concentrate on my work, I couldn’t make sense of any thoughts in my mind. I walked from my office up and down the hallway, trying to get the pain out of my body. Nothing made it go away.
Pain in Multiple Sclerosis is real. At one point in time, “medical professionals” thought that pain didn’t impact people with MS. That couldn’t be more wrong. It is estimated that 30-50% of individuals with MS will experience pain at some point during the course of their illness. However, I believe the rate of pain to be much higher than just 50%, I think it can be as high as 80%.
Pain is classified as either primary or secondary pain. Primary pain is caused by disease progression and demyelinization. Primary pain is usually the intense feelings of burning, shooting or gnawing pain. Secondary pain is usually musculoskeletal pain either caused by poor balance and posture, spasticity, unbalanced use of muscles or joints because of weakness etc. Pain in MS can also be classified as acute or chronic pain.
There are many different types of pain in MS. Often times pain and sensory symptoms can go hand-in-hand (as I mentioned last week) and sensory symptoms can sometimes increase and turn painful.
- Trigeminal Neuralgia. This is a real pain in the..face. This is often experienced as a stabbing or shooting pain usually felt on one side of the face in the jaw area or cheek. It can be very severe, and last only a few seconds. I can be triggered by a breeze going across your face, touching your face or even chewing. It can be confused with dental pain, but is caused by damage to the trigeminal nerve. Treatment usually includes medication to alter a nerve function, and sometimes surgical procedures if medication does not prove to be useful.
- Lhermitte’s sign. This is a type of pain that if the neck is moved enough, pain will start at the neck and move quickly down the spine, feeling like an electric shock. This is caused by damage nerves that no longer transmit proper signals. There are several medications available to treat this, also several lifestyle treatments as well. There are postural adjustments that can be done and relaxation techniques that could improve Lhermitte’s sign too.
- Burning, aching, girdling pain. I discussed these feeling last week when I was talking about sensory symptoms, but there is a large overlap between these feelings on a sensory level then pain level. Burning can quickly become painful, and usually starts out that way. Burning usually affect the legs but can affect the arms as well. Most of these feelings are often worse at night. Sometimes The affected limb is sensitive to touch and can often feel cold. The “MS Hug” is a feeling of constriction felt around the abdomen or chest, and can become quite painful as well. These types of feelings are caused by demyelination and there are medications available to treat them.
- Burning, aching, pins and needles. This type of pain can be both acute and chronic, unfortunately. The treatment for this type of pain when it’s chronic is the same as acute pain.
- Pain from spasticity. Spasticity can cause many types of issues and pain. Muscle spasms, cramps, tightness in joints are all manifestations of spasticity and can create significant musculoskeletal pain. Medications are available to treat this type of pain and the cause, often anti-inflammatory in nature. Regular stretching and exercise can also be very helpful with managing musculoskeletal pain.
- Other muscle pain. General muscle pain can occur for various reasons. Whether it is altered gate, compensation for lack of mobility/weakness/pain or any other reason, pain can present itself at any time. Common treatments are medications, massage, acupuncture, ultrasound, physical therapy or heat.
One of the most under appreciated aspects of pain in MS is the emotional toll it takes. Being in constant pain can hurt physically, but it can also hurt emotionally. Individuals who are in pain are at risk of depression, are more likely to isolate and have difficulty coping.
I’ve been in pain in numerous ways with MS. I’ve had Lhermitte’s sign (technically my first symptom), burning pain in my legs, severe pain in my arms and I believe I have had Trigeminal Neuralgia several times recently. I think pain has been one of my most prominent symptoms, unfortunately. I have been on Neurontin and am currently on Cymbalta to manage my pain. AIP has also helped my pain levels immensely as well.
Getting creative with treatments can be helpful when managing pain. Regular exercise and stretching can be helpful when managing musculoskeletal pain, also making sure to maintain a balance of sodium and potassium to deter cramps. Alternative therapies can be helpful as well, acupuncture, cognitive-behavioral therapy, biofeedback, relaxation training and hypnosis can be useful.
I found myself in the conference room, staring out the window when my best friend noticed I was there as she walked by. I didn’t realize at first I had been silently crying, but once she inquired about what was wrong, the flood gates opened.