Pain

There is an old myth that Multiple sclerosis doesn’t cause pain. Actually, pain syndromes are quite common in MS. MS-related pain can be associated with faulty nerve signals in the brain and spinal cord. MS pain can also be attributed to daily living.

I experience a variety of MS-related pain every day:

• Lhermitte’s sign is a brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. This is a classic symptom of MS
• Burning, aching, and prickling or “pins and needles.”  These are all neurologic in origin. These painful sensations typically affect my legs and feet, but also occasionally my arms and hands. They can be very uncomfortable -- even quite painful -- but are not dangerous or necessarily disabling unless they are severe enough to interfere with a person's activities.
• Pain from spasticity shows itself in muscle spasms or cramps. Tightness and aching in joints is another manifestation of spasticity.
• Back and other musculoskeletal pain. I’ve found that this can be caused by pressure on the body from immobility, incorrect use of mobility aids, or the struggle to compensate for gait and balance problems.

While it may be easiest to lie down and wait for the pain to pass, I’ve found that there are a few things you can do to help with pain. I take three drugs for pain management: Baclofen (a muscle relaxer that treats muscle spasms), Lyrica (treats neuropathic and muscle pain.), and plain ibuprofen. Make sure your doctor knows what medicines you are taking. Regular physical activity can help ease aches in your neck, back, and muscles - it can make you sleep better, too. Stretching for range of motion and flexibility is vital for pain management and basic living. Start slowly and work with a physical therapist to create a routine and/or list of activities you can do on your own and at your own pace. Remember, relaxation needs to be part of your schedule as well.

A good guide from the NMSS: Stretching for People with MS

Emotions and MS

Having MS is emotionally challenging. People with MS can experience anxiety, mood swings, and depression. In addition to symptoms being a response to adjustment to MS, some mood symptoms could be a result of the disease process itself. Though I’m mostly talking about the former here.  

Many people with MS go through a period of grieving after diagnosis - dealing with the loss of certain capabilities and the uncertainty about the future. For me, this happens over and over, with the progression of the disease. I went from a cane to crutches to a scooter to a power wheelchair within three years of diagnosis. I tend to be very hard on myself and hold myself to standards that no one else ever would. I start on that downward spiral of thought, ‘What happens if it gets worse?’

These thoughts can trigger anxiety. Anxiety can happen in response to circumstances in life, such as living with the uncertainty and stress of living with a chronic disease like MS. Before I enter a new situation, I often worry obsessively for days. Since I no longer use my legs, tricky transfers also cause me anxiety. Anxiety presents itself in me with both physiological and psychological symptoms. I shiver, cough and gag and am often restless. I can also be irritable, obsessive, have racing thoughts and catastrophic thinking. In order to manage this, I take anti-anxiety medication if I am going to be in a new situation, and try to distract myself.

Recently, I’ve learned to give myself a lot more breaks than I used to, and that’s done a lot to help me adjust. I have also started Mindfulness training. If you know me, that’s a giant step. I am pretty cynical about that sort of stuff but I have found taking 10 minutes away from life for awhile is refreshing and if I can gain more from it, bonus.

Remember, MS is not all in your head. Your emotions are as valid as your physical symptoms. Include your emotions on the list of topics to discuss with your doctor.

To learn more about Anxiety and MS, click here.

A good resource from the NMSS: Mood & Cognition in MS: [What you can do]