Multiple sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system. It causes damage to the myelin sheath that surrounds and protects nerve fibers. This damage disrupts communication between the brain and body, leading to various symptoms such as fatigue, numbness, vision problems, and mobility issues.
While MS is a serious condition, the prognosis today is much better than it was in the past. Thanks to advances in treatment and management, many people with MS are able to live full, active lives for decades after diagnosis.
What is a “normal” life?
“Normal” means different things to different people. For some, it may mean being able to work and socialize without many limitations. For others, it means staying active through sports, hobbies, and travel. At the most basic level, living a normal life with MS means:
- Having control over and minimizing symptoms as much as possible
- Being able to care for yourself and complete daily activities independently
- Engaging meaningfully in work, family life, and relationships
- Pursuing hobbies and other activities you enjoy
While MS may present challenges in any of these areas, there are many effective strategies and treatments that can help you maintain an active, fulfilling lifestyle.
MS symptoms and limitations
MS is highly variable – no two people will have exactly the same experience. Symptoms range from mild to disabling and may come and go unpredictably. Some of the most common include:
- Fatigue – Overwhelming exhaustion is one of the most frequently reported symptoms.
- Mobility issues – Muscle weakness, spasms, balance problems, and stiffness can make walking difficult.
- Numbness and tingling – Abnormal sensations like pins and needles are common.
- Bladder and bowel dysfunction – Many people experience urinary urgency, leakage, or constipation.
- Vision changes – Blurred vision, optic neuritis (inflammation of the optic nerve), and double vision can occur.
- Cognitive changes – Issues with memory, concentration, information processing, and executive functioning are possible.
For some people, symptoms may be imperceptible, while others may experience mobility loss requiring use of a cane or wheelchair. MS symptoms tend to worsen as the disease progresses without effective treatment.
Treatments to manage symptoms
While MS has no cure, early treatment is crucial for managing symptoms and slowing disease progression. Many options are available:
- Disease-modifying therapies (DMTs) – Medications to modify the course of MS and reduce flare-ups.
- Steroids – Short-term use of steroids like prednisone to treat acute attacks.
- Muscle relaxants – Oral medications to reduce muscle stiffness and spasms.
- Physical therapy – Stretching, strength training, and gait retraining to improve mobility.
- Occupational therapy – Strategies for maintaining independence in daily activities.
- Assistive devices – Canes, orthotics, scooters to aid mobility and balance.
- Bladder anticholinergics – Medications to control urinary urgency and incontinence.
Alternative therapies like massage, acupuncture, and medical marijuana may also provide symptom relief for some individuals.
Self-care strategies
While your medical team treats your MS, you also play a big role in managing life with the disease. Self-care strategies include:
- Getting adequate rest and maintaining a sleep schedule
- Staying cool – heat intolerance is common with MS
- Exercising within your limits to maintain mobility and fitness
- Eating a balanced, nutritious diet
- Staying hydrated and avoiding dehydration, which can worsen symptoms
- Making time for enjoyable hobbies and activities
- Making adjustments and accommodations at work if needed
- Learning to ask for and accept help when necessary
- Joining a support group to connect with others who understand MS
Pacing yourself, listening to your body, and not pushing past your limitations are also key. Keeping stress levels low can help minimize symptom flare-ups.
Maintaining relationships and social life
MS can strain interpersonal relationships due to issues like fatigue, mood changes, and cognitive symptoms interfering with communication. However, many people with MS thrive socially by:
- Educating loved ones about MS and how it impacts you specifically
- Being open about your limitations so friends/family understand if you need to rest or cancel plans
- Making accommodations like using a shower chair or seating area to conserve energy when hosting
- Letting people know the best ways to support you, whether it’s help around the house or a listening ear
- Joining a dating site for people with chronic illness if pursuing romantic relationships
It may mean redefining roles in your relationships or accepting more help from loved ones. But fostering open communication and realistic expectations can help minimize relationship strain.
Maintaining intimacy with MS
Many couples maintain fulfilling sex lives after an MS diagnosis through open communication and creativity. Chronic illness can impact libido and sexual function, but there are ways to overcome challenges like fatigue, numbness, spasticity, and altered body image:
- Trying positions that require less effort and energy
- Engaging in non-penetrative intimacy like cuddling or massage
- Using vibrators or other toys to enhance sexual response
- Timing intimacy for when you have the most energy
- Shifting focus to emotional connection versus physical sensation
Medications, pelvic floor therapy, counseling, and supplements like L-arginine may also improve libido and sexual response. Above all, partners should communicate without judgment about changing needs.
Working with MS
Many people with MS successfully remain employed full or part-time, especially with adaptations like:
- Working from home
- Flexible or reduced schedules
- Frequent breaks to rest
- Ergonomic equipment and workstation adjustments
- Modification of job duties
- Cognitive aids like checklists, voice recorders, software
Under the Americans with Disabilities Act, employers are required to provide reasonable accommodations. Being proactive and suggesting accommodations that would support your work can help.
Of course, adjustments to career ambitions or paths may be necessary for some. Exploring alternateworking roles or conditions, retraining for less physically demanding jobs, and disability benefits are options if unable to continue working.
Table 1: MS-Friendly Occupations
| Jobs well-suited for MS | Potential accommodations |
|---|---|
| Computer programmer | Work from home, ergonomic workstation |
| Accountant | Flexible hours, assistive software |
| Writer | Reduced hours, dictation software |
| Graphic designer | Frequent breaks, specialized input device |
| Teacher | Classroom aide, modified duties |
Staying active and traveling with MS
Exercise provides physical and mental health benefits for those with MS. Moderate activities like swimming, yoga, tai chi, Pilates, and cycling are great low-impact options. Allowing adequate rest between activities can enable staying active. Some tips:
- Exercise in a cool environment and hydrate since heat worsens symptoms
- Consider chair yoga, recumbent bikes, or swimming for those with mobility limitations
- Adapt activities as needed (e.g. use wall for support doing yoga poses)
- Stop and rest immediately if you experience symptoms like numbness or fatigue
Many people with MS also continue to travel domestically and abroad. Planning ahead helps minimize hassles:
- Pack medications in carry-on luggage
- Consider travel insurance if MS is advanced
- Research accessibility of transportation, lodging, and attractions in destination
- Pack items needed for mobility like canes, shower chairs, scooters
- Allow plenty of time for rest periods
- Bring copies of prescriptions and doctor’s note summarizing condition
Emotional health and well-being
Living with a chronic illness can impact mental health and mood. Anxiety, depression, and isolation are common responses to an MS diagnosis. Some helpful coping strategies include:
- Seeing a therapist or counselor
- Practicing relaxation techniques like meditation, deep breathing
- Fostering positive self-talk and being kind to yourself
- Expressing feelings creatively through art, music, journaling
- Joining in-person or online support groups
- Spending time doing enjoyable activities
Medications and lifestyle changes can also help manage mood disorders like depression. Support from loved ones, focusing on what you can control, and trying to stay positive and grateful may ease emotional challenges.
Outlook for living a fulfilling life with MS
While MS presents varying degrees of challenges and there is still no definitive cure, many people thrive despite their diagnosis. Early treatment and symptom management, maintaining a healthy lifestyle, and adapting activities enable many to live active, high-quality lives for years.
The key is working closely with your healthcare providers to find the optimal treatment plan for your needs. Being proactive about managing physical and emotional health is also important, as is asking for support when needed. Although MS may progress over time, a positive attitude and perseverance can help you live life to the fullest.
Conclusion
The symptoms and limitations of MS range considerably, and there is no one-size-fits-all approach to living well with the disease. But thanks to expanding treatment options, adaptive equipment, workplace accommodations, and improved public understanding of MS, most people can craft rich, enjoyable lives post-diagnosis. While MS presents very real challenges, it does not have to prevent you from pursuing education, careers, relationships, travels, hobbies, and all the facets of life that you value.