MS and anxiety: The strange relationship that unsettles my life
I wake up with attacks that can turn into panic — for seemingly no reason
Bouts of heightened anxiety come in forceful waves and hit me like a freight train. I live with a baseline level of anxiety, but at times, it worsens for no specific reason. All I know is that it’s one of the worst feelings.
Anxiety is a common phenomenon in people living with multiple sclerosis (MS) and can arise from the disease itself or from its associated challenges. It can be triggered by a multitude of reasons, such as a diagnosis, symptoms, or treatment choices; the healthcare system; or related unknowns and uncertainties. On the other hand, sometimes there seems to be no cause of that sort; it’s just part of having MS.
For the most part, my anxiety stems directly from my MS, rather than being caused by associated aspects of living with the disease. These episodes can’t be linked to particular stressful events or external pressures; they just happen, with no specific trigger or warning. But that’s not always the case; sometimes external factors do create anxiety. At any rate, an extreme episode can last for weeks or even months at a time.
Starting the day anxious
Each morning, I wake up with an anxiety attack that acts as my internal clock, which is not a great way to start the day. These attacks set a negative tone that’s difficult for me to negate. During these morning moments, it takes me a while to catch my breath and slow down my racing heart. I try to ground myself by recognizing that I’m safe in the comfort of my home while simultaneously focusing on my breathing.
After such a strenuous morning, the rest of the day can get better — but not necessarily. I often walk around with a heavy feeling in my chest and shoulders. I can lose interest in the things I enjoy, such as cooking, trips to thrift stores or coffee shops, doing my makeup, or getting dressed up. I find myself just going through the motions to get by until the day ends.
I also experience skyrocketing panic and an inability to sit still. I always feel that every chore and errand need to happen immediately. When I realize that it’s impossible for me to do everything at once, I feel my panic levels rise, making me frantic.
The other day, I returned from picking up food and cat litter at the grocery store. Upon walking in, I somehow misplaced the car keys and started frantically going through all the bags, feeling my heart race and my body temperature rise. A small voice in the back of my head told me that the keys had to be in the apartment because I’d unlocked the door, but I wasn’t listening to that voice.
During these moments, my partner reminds me to take a moment, breathe, and reassess the situation. But my anxiety, with the hardwiring in my MS brain, makes it increasingly difficult to calm myself down and think through the circumstances.
In addition to the anxiety springing directly from my MS, I’m often overwhelmed by the idea of the disease, and the fear and uncertainty that come with that. I constantly worry about what the future holds or how I’ll feel in the next hour, even as the moments are ever-changing. One moment, for instance, I could feel on top of the world, and the next, I could be hit with fatigue or an excruciating migraine.
At this point, I haven’t discovered any type of coping mechanism that’s a sure route to relief. Usually, I just let it ride itself out, but I know that isn’t always a healthy avenue.
Do you experience MS-related anxiety? If so, how do you navigate it? Let me know in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Dave S
Ty for sharing
I can relate to much of what you're written . I know it doesn't solve my many (unsolvable) worries, it does help
To have some one experience the same and verbalize in a way that in hadnt. Considered
Kelli Davis
I started having these very same issues last fall. I would wake up in an anxious state and i would remain in an attack almost all day. It turns out that I’ve started getting chronic UTI’s with my MS which also can cause extreme anxiety and other behavioral issues. My doctor stated me on two different anxiety meds on top of my antidepressant. After only needing one dosage increase I seem to be stable with it. It was an extremely scary thing that happened to me twice. I actually ended up in the hospital three times until they finally figured it out.
Lisa Kandel
The only way I have found to deal with the anxiety that I have is Jesus. My MS causes a lot of anxiety, and I have fought it for years. Jesus has taken that anxiety away. I can't say I don't get down with the MS ever, but for the most part I'm just always looking up. I have a good support system too, which helps a lot. When I'm having what I call my MS meltdown, which is all of my symptoms hitting me at once, I say a prayer and that gets me through every time. It never fails me.
Stay strong sister. God bless!
Tom A
I am responding to the above Jesus comment by Lisa. I'm trying to interpret it here and elsewhere, regarding the effect prayer has for the reader. It's a personal thing with different meanings for different people. It does not lend itself easily to scientific study. MS is a scientific problem, I assume you'll agree. And my saying anything contrary to the positive nature of prayer is likely to get me some negative feedback if not completely deleted. So much for free speech.
So then, anyway, since we all want relief, are you suggesting that prayer is a mode of relief that others should try, in order to enlist a supernatural intervention in our problems? Or are you perhaps suggesting that prayer can have a similar effect, like meditation, in calming oneself down and relieving anxiety? If I do try it but it doesn't work for me, might you have any suggestions regarding technique or lifestyle changes?
Bonnie Porcelli
I too suffer from anxiety. It’s crippling. I’m not sure how to cope better. I know reading your words helped. I’m not alone.
John Galligan
Desiree, I fight off anxiety attacks nearly every eve. Difference is that my MS comes from VN war and Agent Orange. Just want to tell you that my neurologist put me on Cimbalta, an anxiety drug. It is helping out.
Mechelle VanHoudt
I experience anxiety as well. I do have a family history of anxiety and depression on one side of my family. It becomes worse due to the many MS lesions I have in my brain.
I am treated with anti-depressants (Cymbalta), and an anti-anxiety medication (hydroxyzine), successfully.
I hope you are working with your doctor to help the anxiety!
Trudy Plank
I take 20 ml. one time a day of Citrolopram or Cylexa. Really helps my anxiety!
Hal Grant
The feelings expressed in this article hit home. MS is like a carnival ride that never seems to end. the anxiety hangs over you during all your waking hours never knowing what is next. Makes you unsure of being able to participate in normal daily activities and limits your ability to plan to try and do something that potentially can help you and the anxiety, but keeps you from doing those things out of fear of something going wrong. (bladder, vision, vertigo, back pain, headaches, cramps). I haven't found a path to improvement. Not for a lack of trying butif anybody out there has had success managing anxiety I am all ears. Bless you all.
Ra
Here´s what has helped me: Going outside, working in the dirt- weeding or planting. Learning about the parasympathetic nerve pathway and learning how to do ocean breathing or even just 3 deep breaths- as long as your exhale is longer than your inhale, you will go into the rest and digest mode vs. the fright or flight mode. Watching comedy reels on FB also helps in the moment.
Carole Zundel
Try Rolaids. It has calcium and also SOME magnesium (unlike many others). And it neutralizes any acid it finds. This helps with anxiety. Doesn’t eliminate it (it does sometimes). Try it. It’s cheap. Will very likely help.
Terry Phillips
My chiropractor shared the 4-7-8 breathing / relaxation technique with me, which has been a game-changer. You can look it up online; and I've seen it mentioned in some MS articles.
Dolores
I have major Anxiety as well, however I am weaning myself off of Lorazepam because my new Neurologist will not prescribe it to me. I am doing well although there major moments where I do feel the Anxiety coming on. Sometimes I just wake up with it other times it's though out the day.
Donna Bird
I feel exactly what you described. I wake up with a panic attack. Maybe its because i realize I'm still alive and I have to get through another day. I'll be watching TV and out of nowhere i get an attack. I was going to get my harmones check but I don't know if this will help. The worst is when I wake up with this feeling in the middle of the night, it takes me hours to go back to sleep. Sleeping is a real problem. I can't hold a friendship because I'm always in Several mode and can't bother with the friendship.