With over 2.8 million people worldwide and 1 million in the USA living with multiple sclerosis (MS), many individuals are eager to maintain an active and fulfilling lifestyle, including traveling.
However, traveling with a chronic disease like MS can be overwhelming. From transporting medication to finding travel insurance, addressing safety and accessibility concerns, and preparing for emergencies, there are numerous aspects to consider.
So, here’s a comprehensive guide on traveling with multiple sclerosis. We hope it helps make your travels more enjoyable, safer, and stress-free!
What is Multiple Sclerosis?
Multiple sclerosis (MS) is a disabling autoimmune disease affecting the central nervous system (brain and spinal cord). The immune system mistakenly attacks the protective covering of nerve fibers, called the myelin, causing communication problems between the brain and the rest of the body.
The symptoms of MS differ from one individual to the other, depending on the damage and the affected nerves. Some people with severe MS may lose the ability to walk independently, while others may experience periods of remission without any new symptoms. Common symptoms of multiple sclerosis include:
- Difficulty walking
- Numbness or weakness
- Muscle stiffness or spasms
- Loss of coordination or balance
- Speech disorders
- Bowel and bladder dysfunction
- Sexual disorders
- Mental changes, such as forgetfulness or mood swings
- Partial or complete loss of vision
Several forms of multiple sclerosis
There are several forms of multiple sclerosis, including:
- Relapsing-remitting MS (RRMS): This is the most common form. People with RRMS have episodes of new or worsening symptoms followed by recovery periods.
- Secondary progressive MS (SPMS): In this form, symptoms worsen steadily over time, with or without periods of relapse and remission.
- Primary progressive MS (PPMS): This type is characterized by a gradual worsening of symptoms from the beginning, without any periods of relapse and remission.
- Progressive-relapsing MS (PRMS) is the least common form of multiple sclerosis. People with PRMS experience steadily worsening symptoms from the beginning and occasional relapses.
As of today, there is no cure for multiple sclerosis. However, many treatments are available to help speed recovery from flare-ups, manage symptoms, reduce disease progression, and improve overall quality of life.
- Disease-modifying therapies (DMTs): This therapeutic approach aims to slow the progression of MS, reduce the frequency and severity of relapses, and minimize the development of new lesions in the central nervous system. There are various DMTs available, including injectable drugs like Avonex, Copaxone, Rebif, or Kesimpta, oral medications (fingolimod, teriflunomide, dimethyl fumarate), and infusion therapies (natalizumab, ocrelizumab, alemtuzumab).
- Symptom management: Various strategies and medications are available to manage MS symptoms. Some medicines can alleviate muscle stiffness, spasms, urinary or bowel problems, pain, fatigue, and depression.
- Acute relapse treatment: Corticosteroids (such as intravenous methylprednisolone) are often used to reduce inflammation and speed up recovery from an MS relapse. While these treatments do not alter the long-term course of the disease, they can provide temporary relief.
- Rehabilitation therapies: Physical therapy, occupational therapy, and speech therapy can also help improve mobility, coordination, strength, and communication and consequently help MS patients maintain independence and improve their quality of life.
- Pain management: Chronic pain is common in multiple sclerosis, and various approaches can be employed, including medications, physical therapy, relaxation techniques, and alternative therapies such as acupuncture or yoga.
- Lifestyle changes: Regular exercise, a balanced diet, stress reduction techniques, and improved sleep quality can help optimize overall well-being and minimize symptom severity.
The best approach to MS therapy depends on numerous factors and must be discussed closely with your healthcare team.
Related article: How to Use & Store Your Avonex Pens at Home & While Traveling.
Can You Travel with Multiple Sclerosis?
Absolutely! Most people can travel with multiple sclerosis, and the condition should not prevent you from living a full and active life. However, it's essential to consider how MS can affect your travels and how traveling itself can impact MS symptoms. So, here are some aspects to consider:
Fatigue and energy levels
Fatigue is a common symptom of multiple sclerosis. Traveling, especially long journeys or changing time zones, can significantly increase fatigue, whether you have multiple sclerosis or you don’t.
Plan and pace yourself accordingly, allowing for rest periods and adjusting activities. Consider scheduling breaks during travel and letting for recovery time after arrival at your destination.
Mobility and physical challenges
MS can affect mobility, balance, and coordination. Traveling may involve walking long distances, navigating uneven terrain, or managing stairs.
Remember to consider accessibility during transportation and at your destination, such as wheelchair ramps, elevators, or accommodations with suitable features.
Many people with MS are sensitive to heat, and increased body temperature can exacerbate symptoms. Therefore, traveling to hot climates or during the summer months may require taking precautions, such as wearing lightweight and breathable clothing, using cooling devices or accessories, and seeking air-conditioned environments when necessary.
Stress and emotional well-being
Traveling can be stressful for anyone. But stress can potentially worsen multiple sclerosis symptoms. So, it’s important to manage stress levels by planning and preparing well in advance, allowing for relaxation and self-care during the trip, and having coping strategies.
Engaging in activities that promote relaxation, such as meditation, deep breathing exercises, or listening to soothing music, can be beneficial too.
Climate and environmental factors
Climate and environmental factors can influence multiple sclerosis symptoms, including extreme cold, heat, humidity, high altitudes, or exposure to allergens or pollutants.
Consider the potential impact of these factors on your symptoms and plan accordingly. Dressing appropriately, staying hydrated, or seeking air-conditioned or heated environments may help.
Psychological and emotional impacts
Traveling with a chronic condition like MS can bring emotional challenges and potential anxiety. Therefore, addressing your concerns or fears before and during your travels is essential.
Seek support from your healthcare team, loved ones, or local support groups, and consider engaging in mindfulness or relaxation techniques to manage anxiety.
Related article: How to Store Copaxone Correctly?
10 Tips for Traveling with MS
While MS can present challenges during travel, careful planning, flexibility, and self-care help minimize the impact on your journey. By considering these factors and adapting your travel plans to accommodate your specific needs, you can enjoy traveling and exploring new places even if you have MS!
Related article: 8 Great Tips for Traveling with Arthritis!
Here are a series of helpful tips for traveling with multiple sclerosis:
1. Consult your doctor before departure
Before embarking on a trip with multiple sclerosis, it is best to consult your healthcare team, particularly your neurologist or MS specialist.
They can assess your current health status, review your medications, and provide specific recommendations, precautions, and documentation for your travel plans.
2. Plan ahead
Careful planning is crucial for a successful, stress-free trip. Research your destination, including medical facilities and accessibility information.
Consider factors such as climate, altitude, and potential triggers for your MS symptoms. Plan activities and itineraries that accommodate your energy and mobility levels.
3. Pack your medication safely
Ensure you have enough medication supply for the entire length of your stay. Always pack extra in case your trip is unexpectedly extended because of a delayed or canceled flight, for example.
Keep your medications in their original packaging so they're easily identifiable by customs or airport security workers. Always carry them in your carry-on luggage when flying because hazardous temperatures and atmospheric conditions in the hold could damage your medicine.
Related article: The Ultimate Checklist for Traveling With Diabetes!
4. Keep your drugs cool!
If you're using injectable drugs for multiple sclerosis, like Avonex, Copaxone, or Kesimpta, follow their storage instructions even when traveling.
These must be refrigerated and can only stay at room temperature for a limited time (7 days for Kesimpta and Avonex, 30 days for Copaxone). Besides, they should never be exposed to high temperatures.
Consider equipping yourself with a reliable medical-grade travel cooler such as 4AllFamily’s.
5. Bring documentation
Bring the necessary documentation when traveling with prescription medications for multiple sclerosis or any other condition. Depending on whether you’re traveling nationally or internationally, you may be required to show:
- A doctor’s letter
- A copy of your prescription
- Medical ID cards
- Proof of travel insurance
Related article: Safety Tips for Traveling With Osteoporosis!
6. Check your travel insurance
Before departure, ensure your travel insurance plan covers your specific health needs, including MS-related issues. This can provide assistance in case of medical emergencies or unexpected relapses at your destination.
Most travel insurance companies automatically exclude pre-existing medical conditions, like multiple sclerosis, diabetes, arthritis, asthma, and many others from coverage. However, you can waive that exclusion by revealing your condition to your insurer before departure (and paying an extra fee).
Related article: How to Find Travel Insurance for Pre-existing Medical Conditions?
7. Prioritize accessibility and comfort
Always choose means of transportation that are comfortable and accessible for you.
Before flying, inform the airline about any special requirements or accommodations you may need, such as wheelchair assistance or extra legroom. Research accessible transportation options at your destination, such as wheelchair-accessible taxis or public transportation.
Be aware of accessibility options at your accommodation too. For example, request an accessible room with features like grab bars, roll-in showers, or lower beds if needed.
8. Pace yourself
Traveling can be physically and mentally demanding, especially with a chronic condition like multiple sclerosis. So, be mindful of your energy levels and pace yourself. Listen to your body.
Allow for rest periods and schedule activities with breaks in between. Prioritize activities and choose the ones that best align with your abilities and interests. That way, you can reduce the risks of overexertion and MS symptoms flare-ups.
9. Stay hydrated and manage temperature
Staying hydrated is essential for overall well-being, so drink plenty of water during your trip. Extreme hot and cold temperatures can worsen MS symptoms: take appropriate measures to manage your body temperature, such as dressing in layers or using cooling devices in hot climates.
10. Support and communication
Inform your travel companions about your needs and limitations so that they can offer support and understanding. It's also beneficial to carry a medical ID card or bracelet indicating your condition in emergencies.
Remember, everyone with MS has different needs and limitations, so make sure to adapt the above tips to your specific circumstances.
Related article: A Comprehensive Guide to Store & Travel with Kesimpta.
What Are the Best Places to Live Or Travel With Multiple Sclerosis?
Environmental factors such as temperature and humidity can significantly impact multiple sclerosis symptoms and flare-ups. But that’s not all there is to consider. MS-friendly places to live or travel depend on access to healthcare, supportive communities, and individual preferences and needs.
Access to healthcare
Accessible and high-quality healthcare is a crucial consideration for individuals with multiple sclerosis. Look for locations with reputable medical institutions, neurologists or MS specialists, and comprehensive MS care centers. It's also a good idea to assess the availability of specialized MS treatment options and clinical trials.
You may also want to investigate the country or region's disability rights, laws, and support systems in place. Assess whether they provide adequate support and protection for individuals with disabilities and chronic conditions such as multiple sclerosis.
As mentioned above, climate can significantly impact MS symptoms, particularly sensitivity to heat. Many individuals with MS find milder climates more comfortable. Moderate temperatures, lower humidity, and stable weather patterns might be preferable. However, personal preferences and how your symptoms respond to different environments may vary.
Supportive MS communities
Living or traveling in areas with supportive MS communities and resources can provide social and emotional support. Look for MS support groups, advocacy organizations, or local chapters that can help, and offer information and connections to people living with MS.
Evaluate the presence and quality of social support too. This can include friends and family, as well as local support services. A strong support network can significantly enhance the overall well-being and experience of living or traveling with MS.
Accessibility and infrastructure
Consider the accessibility of the location and its infrastructure. Look for areas with well-maintained sidewalks, wheelchair accessibility, and public transportation systems that accommodate individuals with mobility challenges.
Consider your preferred lifestyle and the activities available in a particular location. For example, some people prefer quieter, less crowded areas, while others may thrive in vibrant cities. Assess the availability of recreational activities, cultural attractions, outdoor spaces, and opportunities for social engagement that align with your interests and abilities.
FAQs About Multiple Sclerosis and Travels
Does flying make MS worse?
Flying itself does not directly make multiple sclerosis worse. However, there are aspects of air travel that can potentially affect individuals with MS, including:
- Low humidity levels
- Increased fatigue from disrupted sleep patterns
- Potential temperature fluctuations in the airplane cabin
- The risk of deep vein thrombosis (DVT) from prolonged sitting
- Increased stress and anxiety.
Therefore, people with multiple sclerosis are recommended to take precautions when flying, such as staying hydrated, managing fatigue, dressing appropriately, practicing stress reduction techniques, and staying active during the flight to minimize any potential impact.
Can you take a long car ride with MS?
Taking a long car ride with MS is generally possible, but there are some factors to consider depending on your symptoms:
- Plan the route and schedule regular breaks for rest and stretching.
- Make sure you're comfortably seated and control the temperature in the car.
- Stay hydrated and pack healthy snacks.
- Stretch and exercise during rest stops.
- If you're the driver, consider sharing driving duties.
- Listen to your body and consult with your healthcare provider if needed.
Does MS cause nausea or motion sickness?
Nausea and motion sickness are not directly caused by multiple sclerosis itself. However, certain MS symptoms or factors associated with the condition can contribute to feelings of nausea or motion sickness in some individuals.
Vertigo, loss of balance, medication side effects, or increased sensitivity to visual or motion sensory stimuli are possible MS side effects that can trigger feelings of nausea or motion sickness while traveling, especially by car.
If you are experiencing persistent or concerning symptoms of nausea or motion sickness, ask your doctor to help determine the underlying cause and find efficient management strategies or treatments.
Are there any multiple sclerosis travel groups?
There are travel groups and organizations for people with multiple sclerosis that offer support, resources, and opportunities for travel. These groups can provide a sense of community, understanding, and guidance for individuals with MS who are interested in traveling. Examples include MS societies, travel groups specializing in accessible travel, online communities and forums, and local MS support groups.
What about you? Are you a frequent traveler with multiple sclerosis? Would you like to share your tips, experiences, and concerns with others? Your contributions can provide valuable support and inspiration to others in the community.