By Ed Coghlan
51-year old Paula Gaines lives in Winchester, Massachusetts. She is a former teacher, currently working for the Department of Elementary and Secondary Education. She started experiencing symptoms of MS in her early 30s but wasn’t diagnosed until age 35, while still teaching and raising two young children.
National Pain Report: Paula, my grandfather had MS, so I have a great interest in this topic. When were you diagnosed, how has it manifested and how is it affecting your life?
Paula Gaines: The symptoms started when my two boys were little, probably around three and four. I had tingling, I had numbness, swelling of different body parts like my arms. I went from doctor to doctor to doctor, who all gave similar feedback like, “Well, of course you’re fatigued, of course you’re in pain. You have two kids under five, you’re halfway through your PhD program, and you’re teaching first grade. So, cut yourself some slack, loose a few pounds,” etc.
It wasn’t until, the summer of 2001, I woke up and my legs were paralyzed and I couldn’t walk. I couldn’t feel my legs below my knees and extending up one of my legs. I went to a chiropractor who immediately suspected MS and sent me for a series of MRIs. Finding a number of lesions on my spine and possibly in my brain, I was diagnosed with Multiple Sclerosis. It was devastating. I made the decision, right then and there, that I was not going to hide it from my sons, that I wanted them to see the face of MS as something other than what I grew up with, which was people in wheelchairs not being able to live full lives. From that point on we managed the disease together, and I just dealt with the pain.
National Pain Report: What is your pain like and what has it been preventing you from doing?
Paula Gaines: My pain is usually focused in my feet and legs. My muscles get very tight, making it hard for me to walk. On occasion, I’ll wake up and not be able to walk at all. I have these strange sensations, where my feet feel like they’re in a bucket of ice water with ice cubes. They’re warm to the touch, but what I feel is freezing, freezing cold. I can even feel the sensation of the water on my skin and nothing warms them up. One of my least “favorites”, is the feeling that I have a golf ball in my shoe. Literally, I feel like I’m walking with a golf ball under the arch of my foot. That’s what I’ve been living with for over 16 years. I have occasional episodes of extreme back pain, or constriction around my rib cage, so much so that I lose my breath. Those days rate above a 10 on the pain scale.
Sometimes the pain is more of an internal pressure-pushing outward. It is very hard to describe but the only relief I have gotten from that type of pain is from wearing compression garments. If I put a compression sleeve, glove or ankle wrap on very tightly, the pain became manageable. Unfortunately, I usually have these types of flares in the summer so the compression garments also would contribute to my heat intolerance—a vicious cycle for me.
My family notices when I’m in pain, sometimes by just the shoes I wear – if I’m in heels it’s been a good day. My sons however, I think I did everything with them that I would have normally done. The basketball games, the baseball games, the football games, I attended all of that. They haven’t told me how my living with MS has impacted them. They both recently graduated from college on the same weekend in two different states, and I took the subsequent week off of work, anticipating that I may be out of commission due to the stress of the weekend, the travel and the 90-degree heat expected for the outdoor graduations. So, I don’t really think I’ve been prevented from doing anything–I just need to plan for how my body may react afterwards.
National Pain Report: What have you been taking to deal with the pain? What has your reaction to that been?
Paula Gaines: I tried using the various prescription medications, which weren’t solutions for me because it took me out of my daily life. I’ve tried Gabapentin, Baclofen, Tegretol and Clonazepan, at different times and dosages to quiet my nervous system in the hopes of relieving the pain. Another solution was to go into the hospital and have steroid treatments. These treatments presented immediate relief, but to have an IV in your arm for eight hours a day for three days in a row was unreasonable to do every time I experienced a flare of pain. So, I just managed the pain by not thinking about it or just feeling like this is my life. What am I going to do? Am I going to crawl into a hole or am I going to just fight through it? I haven’t taken any thing for my MS pain in over 10 years.
National Pain Report: How long have you been using the Quell device—and what’s the difference from the pain medications you were taking?
Paula Gaines: I started using Quell last summer, after searching for pain relief options online. When I turned it on, it did feel like there was a difference, but I was a little skeptical about whether it would wear off, or if this was a placebo effect that I was feeling – but since it was relieving my pain, I kept it in my bedside drawer and used it sporadically when I had acute pain. In April of this year, I woke up with crushing pain in my lower back, and I couldn’t turn over or get out of bed at all. So, I reached in, I took my Quell, I put it on, and was determine to not be sidelined by the pain. I grabbed a cane and went to work that morning, thinking I would likely have to be out of work for steroid treatments later in the week. Within a week (never missing a day of work) my pain was totally gone. I went from probably over a 10 in pain to 0 in seven days, during which I took absolutely no pain medication. I had this “aha” moment that I don’t feel pain anywhere in my body. Anywhere! I’ve never had a pain episode that serious, that totally resolved itself that quickly or in some cases, without a trip to the neurologist and the MS center for steroid treatments. It made me a true believer. I have Quell with me all the time now.
When I began treatment in 2001, I chose Copaxone, which is a daily subcutaneous injection. For 12-13 years, I gave myself a shot each morning to reduce the amount of flares or relapses I had. I took and continue to take Nuvigil, to combat my extreme fatigue and of course I take mega doses of vitamins D3 and B12, and other vitamins. I decided I was not going to add any additional prescription medications if I could help it. I have since replaced the Copaxone with Gilenya—an oral medication that I take every other day! I can’t even put the relief into words because after living with chronic pain, knowing that every day something is going to hurt, I literally have something in my bag to shut it down.
National Pain Report: What advice can you give for people who are diagnosed with MS or other chronic diseases?
Paula Gaines: My advice would be to find a solution that takes the edge off enough so that you can live your life. It isn’t about feeling a 0 level of pain every minute of the day, but just allowing yourself to not moderate your life for your pain levels.