In the early days after diagnosis, MS triggers are often a mystery. However, many find that the more time they have lived with MS, the more they know exactly what makes their symptoms worse.
To hear about some personal experiences with MS, we reached out on the MultipleSclerosis.net Facebook page. We asked the community to fill in the blank: “My biggest MS symptom trigger is ____________.” More than 700 people answered! Here is what they had to say.
Heat is one of the most common MS triggers
The most common response to the prompt was heat. MS results in nerves losing their protective myelin sheath, making them more vulnerable to environmental stressors, such as extreme temperatures. The relationship between heat and the worsening of MS symptoms is not something the general public knows about, but it is something that most of the MS community understands.
“Heat is a ginormous one for me. I try and stay hydrated and out of the sun as much as possible.”
“Summer heat wipes me out.”
“Heat! More tingling, fatigue, everything!”
Lack of sleep
Fatigue stemming from a lack of sleep is another trigger. The exhaustion can worsen other MS symptoms like pain or brain fog. Many in the MS community name lack of sleep as one of their biggest triggers. However, it is not as simple as saying a person needs more sleep. Instead, it might help to look at what is getting in the way of good sleep. Is it nagging or racing thoughts about work or money or something else? Some find that meditation, journaling, or a conversation with a trusted friend helps them feel more grounded and secure before bed, and thus have a better night of sleep.
“Lack of sleep.”
“Lack of sleep seem to be the biggest ones I have noticed.”
Stress goes hand in hand with other triggers
Going hand in hand with lack of sleep is stress. Makes sense, right? If we are stressed, we often cannot sleep. However, sometimes we do not realize we are stressed until we are really at our limit. Before things get too hectic, it might help to look at your daily habits. What are you doing daily, or even a couple times a week, to help with stress? Simple activities like going for a small walk, sitting outside or even standing in the mountain pose outside can help you disconnect from what is causing you stress. One trick: If what is stressing you is something you cannot control that day, remind yourself that you have done all you can for today, and now it is time to sleep.
“Finances and life issues on top making it harder.”
“Stress for sure!”
Stress from other relationships
Many, many of our community members cited that people cause them stress! This makes so much stress. All of us have relationships with bosses, coworkers, children, spouses, and friends. Sometimes, all it takes is one hurtful comment or bad interaction, and we can start spinning. This kind of stress is not good for anyone, but for people with MS, it can also bring on physical symptoms. Because of this, it is all the more important to tackle the people stress. You may need to set more boundaries, such as the fact that you do not want to talk about your MS with coworkers who do not understand it.
We can only control how we cope and react
We cannot control other people and their actions, but we can control our reaction. If you can, try to remind yourself that people who say hurtful things have no idea what it is like to live with MS. Luckily, many in our community mentioned that they do have people in their lives who “get it.” When others cause stress, it is okay to reach out to friends to ask for support in the form of venting or just asking for a little affirming love.
“Mean people who say mean things or do not believe us or say everything you are not supposed to say to MS’ers. We have to endure that multiple times a day all while in pain and fatigued too much to function.”
“Stress from people that do not understand the illness.”
“Add colleagues and chief who does not understand.”
We want to say thank you to everyone in the MS community. We appreciate how honest your shares are!