When an MS Exacerbation or Flare-up Feels Near - Waiting for the Other Shoe to Drop

What are the symptoms of a MS flare-up? Is there any research providing MS treatments that will prevent a flare from occurring? How can you tell if you are about to have an exacerbation?

I find myself thinking about these questions a lot more than usual especially this past week or so, because I’m pretty sure my body thinks it is time for me to have a seasonal flare-up of some type.

Even though I have had MS long enough to know I can’t prevent the inevitable, there is still a piece of my reasoning mind that wants to believe I can will it away or loosen its grip by some sort of advanced mental planning.

I suppose that is based on the fact that sometimes, if everything goes just right, I have felt I have curbed an all out attack or lessened its affects by anticipating its arrival and forseeing trouble spots with my immune system.

In truth, I really don't know that I did anything to lessen or reduce an attack because there have been so many times when my best just wasn't good enough to prevent my body attacking itself. However on the chance that once in a while I can help my body not attack me, I try to do what I can to ward off an attack.

The best case scenario right now would be for me to endure a fatigue flare-up. No walk in the park, but something I am used to dealing with. I know for example, I can recover from a fatigue flare-up by confining myself to bed and being bored out of my mind by my inactive state.

As torturous as the mere thought of me being stuck in bed is, I know it is much better than the sidelining I would have to endure if an all out exacerbation were to occur.

Then we would be talking about the roller coaster ride that is a typical 3-day solu-medrol steroid pulse.

I would do anything to avoid that particular ride.

My Warning Signs

What, you may be wonder, has my attention piqued, my antennae raised, and warning bells sounding?

I’d say it is the swift return of a combination of killer fatigue and severe nerve pain. Being no stranger to either one of these symptoms, I think I have a fairly high threshold for both.

My Prozac experiment has been successful in relieving the fatigue that had made it impossible to do little more than care for my most basic daily functions.

My prescription of Lyrica has done more than I ever dreamed could be accomplished in controlling the burning nerve pain that exists in my right leg which has just recently quickly risen to an intolerable level.

So when my prescriptions suddenly stopped working effectively to keep the fatigue and pain in check, I knew something was not right in the vessel which houses my MS. Like the rivers and creeks that constantly overflowed their banks, this winter, the pain and fatigue was flooding my system and the barrier between stabilized health and relapsing MS was crumbling down.

I can feel my immune system developing small leaks like those sandbags that fail to hold back the rising flood waters when a river-bed crests. Once the first trickle begins you know the barrier will fall completely if the water keeps rising.

My trickle takes the form of pain and fatigue, if I can’t stabilize them with bed rest, then the flood will begin and a full-fledged attack- my immune system against itself- will commence.

Your Brain

(picture courtesy of mr-tip.com
(picture courtesy of mr-tip.com

Your Brain on MS - White Lesions Evident

Courtesy of nature.com
Courtesy of nature.com

Those Pesky White Lesions

Based on the previous damage identified by those pesky white lesions that are visible from MRI imaging, an approximation can be made of what part of the body has been damaged or is undergoing damage. We don’t want our lesions to be active we want them to be dark or inactive.

Inactive lesions mean there is damage but the lesion is healed or just not doing any more damage.

An active lesion suggests new deterioration.

Too many flare-ups, whether  in old or new locations of the body, could indicate a new lesion has formed or an inactive lesion has become active again. 

Fatigue and nerve pain in general are not new. However, I am experiencing more nerve pain in the same leg. Recently the pain has spread to the sole of my right foot which now means the entire leg has been invaded by the painful nerve monster. It is sad to finally have loss the sole of my right foot to this type of nerve pain, but I must say, my foot fought a valiant battle, lasting far longer than I thought possible.

As to its significance, I can only hope that right leg pain is right leg pain, adding the sole of the foot means nothing, as the damage still originates from the same place. So I would like to tell myself the pain in the sole of my foot is not indicative of any new lesion forming, as that is not usually how nerve pain is explained.

In and of itself, fatigue and nerve pain do not equal a MS exacerbation. That is the good news!

The Not So Good News

If the fatigue and nerve pain keep up at their current pace and in addition I began suffering leg weakness, well then I will no doubt be in trouble. That is the course I follow on the road to relapse-town. I’m hoping bed rest will prevent the expansion into leg weakness.

Arm Weakness

For at least 2 weeks now, I have been very aware of weakness in both my right and left biceps. This is new and totally has my undivided attention. This is the type of symptom that could be indicative of a new and active lesion and is in line with the natural course of relapsing/remitting MS that has been part of my life for 16 years now.

For those familiar with MS, the term MS Hug, is how I chose to describe the feeling in my biceps. It is as if a band has been wrapped around each bicep and is being pulled enough to gently squeeze my biceps. I can't really describe it as a painful sensation, sense it feels more uncomfortable than painful.

I will be very worried if my arm weakness increases, and my fatigue and nerve pain stay at their current high-level, and my leg weakness returns.

Then I have no doubt it is time to see my neurologist, as to this very day I find myself enjoying the ability to walk too much to wait for it to return without the aid of steroids. I have always been impatient that way.

Will the Other Shoe Drop?

Right now, I would say there is a 50/50 chance. I am definitely in alarm mode as I wait and hope I can figure out a way to keep the lid on and the sand bags in place. The next couple of weeks will tell for sure.

I thought others might appreciate reading about my process when I think I'm about to flare. What I try to determine, physically, and how I approach things mentally. If it helps you face your own impending flare-up or rule out a flare, then I will be happy I put these thoughts down in writing.

With both symptoms stabilized, I was truly enjoying my days of limited but steady activity. With winter nearing its end I was gleefully anticipating outdoor activity again. Soaking in the sun and watching my bird friends bathing themselves and eating from the feeders I planned to place in my backyard for the first time in two years, were just two of the outdoor activities I had in the works.

My preparations suddenly seem premature and arduous my two symptoms returning with a vengeance seemingly out of the blue, with a suddenness I can only liken to the turning on of a light switch.

It is deflating for sure, but since there is still a small chance that the other shoe won't drop, I will do what every other person with MS does in this situation, hurry up and wait! Followed by some hobbies to pass the time regaining my energy, one such being writing I suppose.

The Other Shoe Hasn't Dropped!

I am happy to update this with the good news that it seems a major flare-up is not in my immediate future. The weekend went better than expected and I am now feeling 96 percent sure that it was a fatigue flare-up and nothing more!

Excited and relieved would be two good words to describe how I am feeling now.

More by this Author


22 comments

Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware Author

I'm glad D,there is nothing worse than having a disease and feeling all alone. Drop by any time or send me an e-mail when you feel isolated. Hope your day is a good one.

Dar


4 years ago

thank you. I do not feel alone in this anymore


Pennie 5 years ago

I googled this topic because I've only had one flare up a year ago and I'm waiting for the other shoe to drop. Sigh. I've had pain in first one leg, then the other...not sure if it's a result of injection sites - I sort of doubt it, because I don't think it's right ON injection sites and it's the whole length of the outer thigh...I usually inject in inner thigh...anyhow...and recently I've been feeling fatigue...and now weakness in arms and hands...the past few days. I suspect something's brewing. I am wondering what some warning signs have been for others who have had MS longer than I. Your post has been most informative. Thanks. Glad you didn't have to suffer through another, though. When you have a flare up, you go to the ER? Interesting...


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Seems like things are improving ethel! I should know more tomorrow though. Positive thoughts!!! (-:


ethel smith profile image

ethel smith 6 years ago from Kingston-Upon-Hull

Hope things are improving. Take care


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Linda, what an encouraging response you've made to my hub. Thank you so much!

Today I actually feel better, I think if nothing happens and I still feel this way tomorrow, I just might be able to update this to say I AM NOT GOING TO HAVE A FULL OUT FLARE! :-) My husband and I are hoping it will be smoother sailing from here.

Thanks so much for your understanding and empathy Linda.


Linda Myshrall 6 years ago

Jen, This is so moving.

I don't know which inspires me more... your courage in facing wave after wave of debilitating pain and uncertainty, or your graciousness in sharing your experiences.

Until this moment, I have been shamefully unaware of what an MS sufferer endures. To use your analogy, I hope the sandbags hold this time. I will pray that they do!

Thumbs up on this! I give it 100 if I could...


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

I'm glad my explanations are helping you Nelie. I'm sure you were already a great friend and your increased understanding will only enhance that. Thanks for reading!


Nelle Hoxie 6 years ago

Jen thank you for explaining so clearly what it is you face every day. It helps me understand what a few friends with MS are facing. And I hope makes me a better friend.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

I appreciate your kindness lovelypaper, thanks for reading my hub.


lovelypaper profile image

lovelypaper 6 years ago from Virginia

Thanks for sharing such a personal experience, Jen. You are an inspiration.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hey Tammy, thanks for the hug! I'm starting off with a little too much pain this morning, but hoping the sunny day will bring me a bit of relief and enjoyment. Hoping you have a good day too. (-:


Tammy Lochmann profile image

Tammy Lochmann 6 years ago

Jen...Thanks for sharing-this hub is particularly powerful. I hope this finds you having a good day. Hugs to you!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

GarnetBird, I was on Neurontin (Gabapentin) at first. It worked for quite some time, but of course my system adjusted to it and I found myself taking 6 pills per day and the pain was still intensifying, along with weight gain. (A side effect)I was so relieved when my neurologist switched me to Lyrica, as two pills daily usually does the trick, unless I'm in a fatigue flare-up. I can't imagine pain in my spine, so am thinking about you and hoping it is being managed with the neurontin. Gentle hugs to you!


GarnetBird profile image

GarnetBird 6 years ago from Northern California

Awesome HUB: I have severe nerve pain in my spine. I have a flare up today and am on Gabapentin for it; My heart goes out to you.Resting with an active mind can be very difficult. Take care-Garnet


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Good morning fishtiger. Yes despair equates to no hope. I do get angry though, seems a better use of the negative emotions that crop up when I'm straddling the fence of flare-up versus a full blown exacerbation. Thanks for your never ending support. It comforts me!


fishtiger58 profile image

fishtiger58 6 years ago from Momence, Illinois

Hang in there my friend. I am hoping and praying you get through this latest episode with flying colors. Your attitude reminds me of my great grandmother. Dropping into despair will do no good. Keep writing and I will keep reading. Hugs Jen.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

DeBorrah, thank you for your kind and encouraging comment and for taking the time to read about my experience. I know that one of the reasons I am able to keep a positive attitude is due to my strong faith and dependence on our Heavenly Father.

Paradise, thank you I will keep you informed, and I sure hope our hope is realized and the other shoe doesn't drop!


Paradise7 profile image

Paradise7 6 years ago from Upstate New York

Bless your courageous heart, Jen. I hope like everything the other shoe doesn't drop.


DeBorrah K. Ogans profile image

DeBorrah K. Ogans 6 years ago

Jen's Solitude, Very informative hub! Thank you for sharing your experience as well as insight on MS this has been educational. I realize that it takes a great effort for you to do so all things considered! Be encouraged! You are not alone the Lord is with you! Thank you for making us aware of the little things we take for granted!

May the Lord strenghten you! May He touch your body in a way that only He can! In His love & Blessings!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Well Carolyn, thank you very much for understanding the point of my hub. I totally appreciate it and you! :-)


BkCreative profile image

BkCreative 6 years ago from Brooklyn, New York City

There is nothing better than a personal experience. This is such a great sharing hub - something so desperately needed.

You've provided a wealth of important information but also ways to cope. Love all the puzzles you included - we can all use these brain teasers.

Always good to catch up with you Jen's Solitude.

Carolyn

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