Multiple sclerosis (MS) is a disease of the brain and spinal cord. The insulating covering of nerve fibres can be damaged anywhere throughout the central nervous system. And while MS often affects balance, coordination and the ability to walk, it may also cause “invisible” symptoms, such as severe fatigue, pain, depression and memory problems.
Nadine Bertola of Toronto knows about fatigue. “Some days I look fine, but I’m exhausted. You wake up in the morning with a plan of what you want to do. You tell yourself what you want to do, but your body has another plan.” It was fatigue and not the more obvious physical MS symptoms that led to Bertola going on long-term disability.
Some have described severe MS fatigue as “like your battery going dead.” Approximately three-quarters of people with MS experience feelings of exhaustion. Fatigue is one of the main reasons people with MS have to leave the workforce. Pain is an MS symptom that is only now being recognized and managed appropriately. In fact, for years people were told that MS was a “pain-free disease” even though their personal experience told them differently.
Today, there is recognition that about half of people with MS will have pain of some sort: leg cramps, spasms, spasticity, sensitivity to heat or cold or touch. The list, unfortunately, can be endless.
Another set of invisible symptoms are changes to mood and memory. Recent research has found that about 40 percent of people with MS experience changes to thinking and memory, and about 50 percent or more experience changes to mood. This research validates what people with MS have been telling their families, their doctors and the Multiple Sclerosis Society of Canada for years.
MS can influence the mind’s ability to store, organize and recall information. The most common complaint is short-term memory problems. MS can also affect the way the mind regulates moods and emotions with depression being the most common experience.
The good news is that there are ways to manage invisible symptoms such as fatigue, pain and changes to mood and memory, and the MS Society is in the forefront of providing that information.
Over the past five years, the Multiple Sclerosis Society has developed and delivered a series of educational sessions to help people better manage multiple sclerosis. These sessions have featured health care experts, people with MS and representatives of the MS Society who presented the best information on managing fatigue, pain, cognitive problems and other topics. Thus far, they have taken place in 68 cities and towns across Canada.
The MS Society has also developed publications for people with MS, families, caregivers, and health professionals on these and other topics. They are available from MS Society offices and on the website. These resources aim to provide people affected by MS with accurate, up-to-date information which will enhance their quality of life while acknowledging the challenges of living with MS.
In addition, some of the education series are archived on the MS Society website along with online-only presentations about managing sexual dysfunction and bladder and bowel issues. To access them, click on “education” in the Support and Services section of the website, www.mssociety.ca.
Another MS Society web resource is Ask the Expert. Individuals can ask questions about MS that they wish to have answered by expert health care professionals. Questions that have been answered are organized on the Ask the Expert page for easy reference. Ask the Expert is available at www.msanswers.ca.
Locally, MS Society division offices and chapters offer a wide variety of programs and services including information and referral, supportive counselling, self-help groups, funding and recreational programs. Sometimes a call to the MS Society is all that’s needed to clarify, for example, symptom management strategies for pain.
Having people understand what you’re going through – either through a self-help group or through supportive counselling over the phone – can also be a great relief, particularly when invisible symptoms are underestimated by those around you.
MS Society-funded research is finding more answers about the cause of MS and ways to treat the illness. Equally important are the MS Society programs and services that provide hope for today by enabling those affected by MS to better manage the disease and its effects.
MS Society of Canada
Ask the Expert
MS Society division offices:
Check your local phone book or the MS Society website.