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man overheating in the shower

Things I Wish People Knew About MS & Triggers

In a number of my articles, I like to talk about things that I wish people knew about or understood about living with Multiple Sclerosis. This is a common train of thought for me because so few people outside of those afflicted with it truly understand.

Triggers and MS

So here’s another one, some things that I wish people knew about “triggers”. Despite the term “relapsing-remitting”, MS never really goes away. Yes, early on in your time with the disease, you may have exacerbations (relapses, as some call it) and seem fine after them, but every exacerbation does damage (and the disease can still slowly be doing damage on you without a noticeable relapse as well). That damage may not always be apparent, until it is, sometimes quite suddenly, when something triggers a worsening of symptoms. I bring all of this up to help explain why someone with MS may be fine one minute and not the very next.

What is a trigger?

A “trigger” is something that causes a worsening of symptoms. This worsening could be damage that is already there from previous disease activity or it may be new disease activity, where the immune system is actively attacking the myelin of new nerves.

Each person is unique

Everyone with MS is unique, so while some triggers might be common among those with MS, some may not. Many people have trouble with heat, others love the heat and have trouble with cold. The nervous system is massive, damage can be done anywhere and to different extents, that’s a big reason why we are all so different.

Timing of MS triggers

Many people have something that triggers their initial disease activity, something that gets their immune system going, but then, because of MS, that immune system doesn’t stop and starts treating your own nervous system as an invader. Many, but not all, people with MS can point to some experience that preceded their MS symptoms – an illness, accident or even childbirth. Something traumatic to the body. In my case, doctors believe it was when I contracted meningitis in early college.

What does this mean?

Not all worsening of symptoms is a sign that you are experiencing an exacerbation. Something may simply be interfering with the damage that has already be done. Think of your nerves as a phone charging cable: if that cable has been chewed by a pet or just worn out so that the outer layer is damaged, it may still charge, until it’s in the wrong position. Our nerves are just like that; they may function fine most of the time until some condition prevents that. That condition is the trigger we are talking about here. I’ll use heat as an example again: the signals traveling on that damaged nerve, for many people, slow down when they get warm, which causes symptoms to show.

Hard to plan for the unexpected

Sometimes triggering the worsening of symptoms can happen quickly and unexpectedly. It’s a key reason that those with MS end up canceling plans at the last minute. Something triggered their symptoms to come to the forefront. I’ve had to bail out on plans at the last minute numerous times because, while getting ready to go out, I took a shower and it raised my body temp. Even a slight increase in temperature is enough to make my vision blur, my legs weak, and the right side of my body numb. I’ve also had to leave places early because the temperature in the room increased and it wreaked havoc on my body. Sometimes triggers are out of your control.

Recognizing common triggers

Recognizing our triggers isn’t always easy and when we do know them, it’s not always easy to control them. As I mentioned, heat is a big trigger for me, but even knowing that, I can still let the shower get too warm. It doesn’t take a dramatic increase in temperature for me to have issues, which makes it very difficult to control. Once our symptoms have been worsened, it’s not always a quick process to get back to the state we were in. If I’ve overheated, yes, cooling down may help, but it often won’t work as quickly as it took for the symptoms to come on. Usually, spending some time resting is all that will help, which can be very frustrating.

Understanding common triggers

Some common triggers of worsening of symptoms: temperature change (too hot, too cold, or even just a change either way), stress, loud noises, getting sick (in general, anything that might ramp up your immune system can be problematic), and lack of sleep. Those are some, but remember, MS is a very individualized disease and each person can be affected differently.

Thanks for reading!

Devin

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Carol
    10 months ago

    Devin,

    Thanks for this article. Very informative. I didn’t realize that every exacerbration did damage. That’s very scary. I identified myself with stress and lack of sleep as being triggers. I’m still trying to figure out how to solve those triggers. I have been unable to convince a PA to provide me with some sleep medication.

  • RobertRafferty
    11 months ago

    What do I wish people knew… I wish people would realize that those that are trying to assist us are destroying us, they are not the experts we are the experts I am sick and tired of doctors who are sitting here making six figures trying to douse me with opiate drugs killing me costing me millions of dollars thinking they are the authorities, I have fought and fought and I have gone against the system and I have smoked cannabis for the past 30 years to treat my multiple sclerosis symptoms I drink moringa, my doctor would never even prescribe it because it’s a tree, actually it’s a weed. It has more of nutrients required for a daily diet.
    We lose, I have been suffering with multiple sclerosis for over 35 years I have been disabled for over a decade I am trapped in a second-floor apartment unable to make stairs, I’ve gone Against the Grain I’ve gone against my doctor’s I haven’t been to one in five years, I’m off of every Hill every shot every medical treatment I have been told will get me through this, when I ask for my treatment to be my way, I’m shut down just as I sat in court and well ignored for 15 minutes while the judge conversed with an attorney of an individual trying to evict me from a building because two of his tenants are unhappy with their environment, they have used me to break in their leases and move out as I have instructed him, I tried to explain this to a judge and I’m told I will be held in contempt and thrown in jail if I open my mouth again. It was Shenanigans she claimed I was pulling, as I sat and trembled and shaped and my voice scratched as I couldn’t talk because of the nervousness and anxiety and panic attacks I was having standing in front of a judge I was told they were Shenanigans my disability was a Shenanigans in front of the court. This is the compassion we get daily hourly. What do you want to know that you don’t you know nothing if you don’t have a chronic illness. As a matter of fact this will fall on deaf ears. This will only be going to those affected with multiple sclerosis. The title of the article will immediately make those aren’t affected skip over it. Trust me as I’ve said 35 years of multiple sclerosis, I have a brother who pays more attention to a coach who his son had as a child who was diagnosed with multiple sclerosis 3 years ago has posted five times on his Facebook page to support this man’s cause. My phone has remain silent for over 10 years I have never gotten a call to find out how I’m doing. So in 7 days, after losing my house having to sell to businesses move seven times because of a disability and a disease that was developed as a bomb. Agent orange is still sprayed on every plant we eat in order to save the farmer time from picking weeds. My neurological system has been destroyed because toxic chemicals on my food. I’m done, I’m sick and tired of these affectless articles that do nothing but pander to the patient dealing with a chronic illness. We put those like Mitt Romney’s wife all over the media showing how wonderful she’s doing with multiple sclerosis that b**** has a headache. We see how she can fly her giraffe horses all over the world. Doesn’t she live a Wonderful Life. The Osborne kid, yes it’s a pity, it’s a shame but he hasn’t lost a home, he hasn’t had to pay out a million dollars in medical treatment because he lost his insurance because of his disease he has a bank account to enable him to buy the conveniences that 98% of the world dealing with chronic illnesses has absolutely no way of getting in touch with and then you probably promote him all over national TV and spread news about multiple sclerosis. You make him look like a shining star of success again 98% of us are burning in hell here and all you want to do is Market multiple sclerosis is a disease that does have sun and shine in happiness it doesn’t ever shine. So like I said I’m being evicted in 7 days and I am walking away with one bag and my dog because that’s all I can carry, 3000 square feet of History, clothes, pictures, everything, I’m walking away from it. And being evicted from my home that I was going to die in with this disease because I was happy and I had son and I could have plants grow and I was in Mentor for 200 youths did it pass through my apartment this past year. I’ve saved children from suicide, I put a roof over their head for the night, we fed them, but more importantly I listened to them, I didn’t prescribe to them. They’re all still here just not inside my apartment, I could tell you a few that have changed Direction the past month since they haven’t been here.
    I just so sick and tired of these questions.
    How about this I want reparations for all of the money I’m all of the drugs and tests and doctor’s bills that my insurance has had to pay for for the force medication of opiates that have led my life into a cesspool of Destruction an inability to think remove. How about the house I lost how about the profits from the businesses that I was forced to sell it was going to be my retirement, $5,000 a month because I have to wait for our government to get up to speed on my disability benefits that 18-month Gap I paid for, it put me in poverty and stole my home, and in 7 days I will be homeless! What do I want the world to know they know nothing about how to treat people!
    I may be rude and maybe a little off-putting but it’s my damn life and this disease has destroyed it!

    Don’t think I’m in a bad place!
    I bought a patch of desert a decade ago for $100, paid the taxes, I own it. I’m going to the desert to plant seeds and build a forest that can support a community, I’m tired a fighting a system agreed and lust.
    And now is cannabis is legalized all across the country something I’ve been fighting for for 30 years all the talk is changing we went from the fight to get people off of opiates that would killing them, and now we’re talking about prophets and money and the economy… Assholes! Taxes…pricks, and we have the governor of the state of Illinois pandering to the people at the State Fair pandering to the voters for votes as he signs Industrial Hemp production into law… And two days later drastically changing the medical marijuana laws making it accessible to hundreds of thousands of people… When is the governor’s election!
    I probably didn’t follow your posting rules, I don’t live buy rules, rules are interpretations of others I live by morals I have a moral structure that does nothing but help compassion, nurturing, and Truth. Truth isn’t always comfortable! I haven’t been comfortable since I was 26 years old and in the prime of my life.

  • Judethutterback1971
    11 months ago

    I live I Maryland too. I have not been able to leave the house all week due to the heat. It just destroys me.

  • lcal
    11 months ago

    P

  • sevensix
    11 months ago

    Common everyday stress is the mechanism that trigger MS’ ill effects usually felt within a few hours of an incident manifested as weakness, spasticity, and falling. Everyone has stress so I do not believe this is any different or special for me but certainly compassionate for others so afflicted by his malady.
    Not much I can do except wait out the episode a few days until it passes (and nothing else happens interim to disrupt my life ).
    My wife uses the analogy of a gas tank to measure my energy levels. Only I can tell her when I am running on fumes; otherwise, a good system. Stress burns a lot of precious fuel that I need for operational readiness (sorry, Marine Corps speaking here).
    Lots of stress, empty tank, just park me in the corner where I can quietly ferment until someone fills my tank.

  • LoriJones
    11 months ago

    Thank you Devin.

    Sounds simple enough, but was good for me to see this written down, especially, how you can feel okay one minute and not the next.

  • gmc
    11 months ago

    A cacophony of noises kills me. I quit going to a particular OB-GYN just because the waiting area had music and television both going constantly at fairly loud volumes. I now carry earplugs for those uncontrollable situations.

  • Loopyone
    11 months ago

    Love your articles. Heat kicks my butt and this week has been horrible in Southern Maryland. You could cut the humidity with a knife (a bit of an exaggeration but you get the point). Thank goodness for my neck cooling things, they are awesome!

  • dkp1
    11 months ago

    This is excellent and I like your analogies. Thx

  • JimmyMac
    11 months ago

    I think those of us with MS constantly search for ways to explain what it like to have MS for others benefit. Not that I think this is a bad thing but there are things I wish I had known about MS when I was diagnosed. For example, I might not have panicked when I relatively no help from my medical team when picking my initial DMD. The answer is nobody really knows but I wish I had known how common this is. Not that I don’t care how others perceive MS.

  • Mascha
    11 months ago

    I wish I had this article when I was diagnosed,it would have helped me a lot. Now 6 yrs on and I’ve had MS for some 20 years i still find your article helpful. I know everything you’ve said but if people are interested to know more,your article would be a good choice.
    Thanks:)

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