Why Is It Not a Relapse Every Time I Feel Worse?

Why Is It Not a Relapse Every Time I Feel Worse?

There are times when symptoms get a strong hold of me, making me feel worse for a few hours, and gets me worrying about relapses. Living with Multiple Sclerosis can be so unpredictable and, when my legs burn harder, the numbness is more pronounced, the fatigue really knocks me down, or that new tingly sensation shows up in my toes, I wonder, “Am I having a relapse or is what I’m feeling some sort of pseudo-exacerbation or is something else happening altogether?”

Sound familiar?

I recently attended a patient education presentation, “Hot Topics in MS”, hosted by the Multiple Sclerosis Association of America (MSAA) with Dr. Rip Kinkel, Director of the Multiple Sclerosis Program in the Department of Neurosciences at UC San Diego. During one part of his presentation, he posed the question: “Why is it not a relapse every time I feel worse”? I was grateful that he talked about this because I suspect this comes up for a lot of us and I love his list “stuff-to-rule-out-first” before any conclusions can be made.

7 things to consider when suspecting a relapse:

  1. Medication effects
  2. Effect of other medical conditions
  3. Painful stimuli increasing spasticity and spasms
  4. Tenuous functional status with little reserve
  5. Fluctuations in symptoms with hormonal cycle
  6. Effects of stress, anxiety, or depression
  7. Elevated temperature causing Uhthoff’s phenomenon

When I saw this list flash up on the screen, five stood out as being really familiar to me: #1, #2, #5, #6, and #7. Okay, okay. I realize this is practically the full list but this is stuff is important. Let’s run through it together.

First things first, what are the side effects of the meds we take?

Dr. Kinkel echoed what I heard Dr. Jody Corey-Bloom, Professor of Neurosciences at UCSD, say last year during the Annual MS Symposium in San Diego when she reminded the crowd that when MSers feel something new or elevated, it is always smart to check side effects of all medications first before leaping to the assumption of an MS relapse. Makes sense, good advice doctors.

Is what we feel due to other medical conditions?

This is something to consider for sure. A couple of years ago, I experienced intense double vision and because I live with MS, I naturally attributed it to the disease. The words “relapse” certainly entered my mind. But, lo and behold, the double vision I was experiencing was not MS related at all. I consulted my neurologist and an ophthalmologist who determined it to be a convergence insufficiency. I was prescribed “eye push ups” to help.

Are we feeling worse because of our hormones?

(sorry fellas, this one is for the ladies) Ugh. This is definitely possible, at least for me. I’ve noticed that right before my menstrual cycle, I feel worse and suspect it’s because my body temps go bonkers causing me to feel worse. Not fun, especially because I’ve also starting noticing some kind of new trend – hot flashes. Good grief! To help, I discovered a cool trick. When I start to feel warmer, I either run very cold water on the inside of my wrist, right at the pulse point, or hold ice cubes there, for about 15 minutes. Once I’ve recovered, I can return to doing whatever it was I was doing – hopefully something fun!

How are stress, anxiety, and/or depression making us feel?

I think it’s always a good idea to check in with ourselves, honestly, to see how stress may be impacting our lives and the way we feel. The same goes for anxiety and depression. All three can cause a variety of physical responses, right? I try (try being the operative word here) practicing stress-relieving activities like exercise, meditation, yoga, and eating well.

Is elevated temperature causing Uhthoff’s phenomenon?

What is Uhthoff’s phenomenon? I like to think of it as MS symptoms feeling worse when the body gets overheated from stuff like hot weather, exercise, hot tubs, etc. This happens to me all the time, especially when I hang out too long in the hot California sun. Luckily, I work and live in spots with lots of A/C – super helpful in keeping me cool and feeling as best I can.

Naturally, I’m not a doctor nor do I play one on TV. If you are worried about a new feeling or flare up, please call your neurologist and run through Dr. Kinkel’s list together to ensure everything is considered.

How about you? Have you experienced times, like me, when something happens with your body that feels like MS but turned out not to be related? Or, maybe the opposite happened? The flare up was indeed related to MS and what you experienced was a relapse? I hope this list of “7 things to consider when suspecting a relapse” helps you navigate the difficult course of Multiple Sclerosis.

Take care,
Christie

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

View Comments (15)
  • Drem
    3 years ago

    Not that this isn’t true, I think it’s important to share some information because some of these symptoms may be real relapses and just undetected for the following reasons.

    Firstly, if a symptom persists for more than 3 days it’s time to call your doctor. Leave a message if they don’t pick up describing your symptoms. If it’s something serious like swallowing I would go to the ER. Like the author mentioned, if it just came and went, it’s likely not a relapse.

    Secondly, requesting an MRI with and without contrast may show no signs of relapse. However, not all MRI machines are the same. Make sure you are using a T3 machine. They are the most powerful and usually protocol for MS people in need of an MRI of the brain, neck, and spine. Why? Because, even the smallest of lesions can cause immense disability. Sometimes, large lesions cause no symptoms. And not all lesions need steroids to take down inflammation if it’s not causing a major problem. You may be in a relapse and you and your doctor don’t see it on paper.

    Thirdly, depression and MS have been officially linked by the MS society. People with MS have a higher chance of suicide. If you’re feeling mood swings that are severe and long lasting, this may be a sign of a lesion in a part of your brain that controls hormones. If it corresponds with a natural cycle, if it’s severe I would consult a dr. I am currently in a relapse in the hospital and my first symptom was severe depression that I attributed to stress.

    Finally, I notice I get relapses in cycles with changes of seasons like commenter dakota stated and it is in fact sometimes a real relapse. I don’t know why. It’s just something I noticed with myself. On average I get at least 1 new lesion a month, with 3 at most. However, not all cause noteworthy problems and so I don’t address them. I get more when seasons change. With stress increasing. Stress can affect MS, as does depression.

    Food for thought. Great article!

  • dakota
    4 years ago

    For me, I tend to have relapse-esque incidents with the changing of seasons. Without fail, come memorial day and labor day, I’m sick as a dog. Summer in general just isn’t a good time for me. I’m just so lethargic and muddled. Right now I’m dealing with getting the dosage on my new pain pump right, so I’m in more pain than usual. It’s been hard to get motivated.

  • Matt Allen G
    4 years ago

    When I see new or worsening symptoms I always ask myself “what’s changed?” – New meds? Lack of sleep? Heat? etc. Without an MRI machine in my garage that is really the best thing I have found I can do haha….

  • Curious1
    4 years ago

    I’ve had some an odd situations. I am into SPMS for a couple of years now. I won’t go into everything I deal with but I have two issues recently I’d like to share. Painful episodes behind my knee, assumed it was MS spasms, went to MS Specialist just to be told it’s probably orthopedic. So I saw my ortho doc, MRI on knee showed normal knee, said it’s likely nerve pain from MS. Then I continued feeling worse in general, legs weaker, more painful & my energy depleted very quickly. Since I also have spinal stenosis, MS Doc sent me to a neurosurgeon to see if that was contributing to my symptoms. I thought maybe it was and a lil surgery would help! Even if half the symptoms went away I’d be thrilled! No such luck, stenosis isn’t contributing, all MS related. Ugh!! This disease is frustrating!

  • But You Look So Well
    4 years ago

    Seems like every time I read an article from Mutliplesclerosis.net I want to reply and say “YES! Thanks for the article! I was wondering about that myself!”

    We recently moved from the Northeast to my old home town, Roanoke VA, and I’ve been feeling very symptomatic for months now. I put it down to not getting enough exercise because the move has played havoc with my exercise routine, and exercise is what moved me from a wheelchair at my lowest point to being able to stand on one leg for seconds at a time at my highest point. But lately I’ve been exercising for my ususal hour and then coming home and taking a three hour nap (not a power napper, despite my best efforts) and feeling completely exhausted most of the time. Oh NO! I’m having a relapse! I thought, but looking at Dr. Kinkel’s list, I think I’m getting a glimmer of why I feel so poorly. Move? From a place we lived for 35 years to a new house in a city where we’ve never lived in a city before? STRESS? Ya think?

    Thanks, Multiplesclerosis.net! You always come through at just the right time!

  • itasara
    4 years ago

    I’m so glad you wrote this article. I think about this most of the time. I don’t know if I have exerbations or not. Take the case of the overactive bladder or stress incontinence. My OB comes and goes. When it comes it comes for awhile and when it goes away it isn’t a problem. I have had stress incontinence since for more years than I can remember. My mother had it. I had 5 pregnancies in my younger days which may have contributed. Also I know that many women especially as they get older have overactive bladder and stress incontinence and they do not have MS. If I have aches and pains I ask is this MS or not? I really can’t say. So I agree it isn’t always MS that is the culprit in one bothers us!

  • But You Look So Well
    4 years ago

    As Christie says, I am not a doctor nor do I play one on TV, but I also have OB and have been using an Oxytrol transdermal patch which helps a LOT. It’s available over the counter. You put the patch on your lower abdomen or lower back, and it does reduce the number of times I have to get up at night.

  • Diane
    4 years ago

    I thought I was experiencing optic neuritis for the third time when I lost vision in my right. I assumed I would be scheduled for a 3-day infusion of steroids. Turns out, I had a stroke and because I didn’t seek immediate care, I will never get the lost vision back. You’re right. Not all issues are MS related.

  • Christie Germans author
    4 years ago

    Hey Diane. So sorry to hear about your stroke. Hope this note finds that you are doing okay. Hugs to you and thanks for sharing your experience.

  • Laurie
    4 years ago

    Hi Christie,

    I noticed you mentioned holding ice cubes on your wrist for 15 minutes to bring your body temperature back down. I do the same thing, but I have cooler wraps, which you put the ice pack in and you can fasten them with velcro around your wrist – so you still have both hands free! It might be worth looking at.

  • Christie Germans author
    4 years ago

    Great idea Laurie! Thanks so much. I am always a bit bugged that I can’t use both hands while cooling off…You rock.

  • Laura Kolaczkowski
    4 years ago

    This is a great list of seven – we always want to jump (as if i could!) to the wrong conclusion and blame the MS for everything. Dr. Kinkel’s lists are full of wise thoughts – you’re fortunate to have him and Dr. Corey-Bloom in the same place. -Laura

  • Christie Germans author
    4 years ago

    Yes, it is so easy to blame MS for everything. I was so glad to be able to meet Dr. Kinkel and take in his list of seven. Hope you are well. Hugs!

  • mascha
    4 years ago

    This helps a great deal as i justed started new meds and now think maybe this is the reason instead of a flair.Thanks for this great posting.

  • Christie Germans author
    4 years ago

    Hey Mascha – so glad you found this helpful. I, too, hope what you’re feeling is not a flare but something to do with your new meds. Keep an eye on it and keep talking with your neurologist. Hugs!

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