Life With Multiple Sclerosis Feels Like 'It's Always Something'

Life with MS feels like 'it's always something.' And for me it is. My MS butts in to my everyday life. While my disease is not life-threatening, it is life-encompassing.

When I got out of the hospital, we made quite a few changes. We had an overhead lift system installed for transfers with a sling because I could no longer bear weight on my legs. Now, when I want to get into bed, I have to have a sling positioned under me and get hooked up to the overhead lift. It swings me into bed which is, granted, a lot easier on me and my husband but is a constant reminder of my progression. We also had a roll in shower installed in our master bath. This is also easier than the old way of pivot transfers to a bath bench. But, as a 39-year-old woman, it still feels like a giant arrow pointing at me saying ‘I am disabled.’

Oddly, I never seem to be disabled in my dreams. But then I wake up and remember. The moment before I open my eyes, I find myself assessing how I feel, wondering what my body has in store for me today.

Being comfortable at all can sometimes be difficult. I am often in some degree of pain and have spasms and other symptoms. The thing with pain is that it varies so much from day to day. ‘Pain’ can really include a number of things - the MS hug (a tight, constricting pain in stomach and/or chest area), Lhermitte's sign (an electric shock type sensation up your spine when you tilt your head down), spasticity, paresthesia (numbness and tingling), and dysesthesia (burning, stabbing, or tearing pain).

On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. I work full time and therefore feel productive which is very important to me.

MS does have a big impact on my life. I often see phrases like "You are not your illness." True, but staying myself and not getting wrapped up in it is the battle.

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