Living Well With MS: Surviving an MS Relapse

Living Well With MS: Surviving an MS Relapse

Living with MS is like riding a roller coaster with many ups and downs, twists and turns, and sudden starts and stops. MS is unpredictable and unique to each individual. As the unexpected can happen at almost any time, it is important to be prepared for the challenges, both physically and mentally, especially when a relapse occurs.

It can be helpful to design an “MS Survival Kit” to help deal with those challenges.  Here are some of the things which I keep in my Kit for when a relapse occurs, or I simply need the assistance of others. It is important to have a plan in place and put it into action so that you can concentrate on taking care of yourself and allowing your body to heal.

The basics:

  • The ability to ask for help. Establish a support network.
  • Treatment for the relapse with Solumedrol or Acthar Gel.
  • Time to rest your body. It usually takes at least two weeks before I begin to feel like myself after a round of Solumedrol infusions. Although I may have to get back to normal activities, I can still remember to be more patient with myself and allow myself more time to rest.
  • Patience. Lots of patience.

Build your back-up team:

  • Organize. Make a list of your normal activities, responsibilities, and obligations in a typical two to four week time period. Some examples might include preparing meals, grocery shopping, laundry, housecleaning, yard maintenance, carpooling, work, work-related or social projects, attending children’s activities, caring for pets, etc.
  • Brainstorm. Think of people around you (including your family members) who would be willing to step in if asked. Add their name(s) next to each activity; include their phone number and email address.
  • Contact each person on your list, telling them that you are planning ahead in the event that an MS relapse occurs. Ask them if they would be willing to help with specific item(s) on your list. Try to spread out the extra responsibilities among several individuals. Keep in mind that it will take more than just a couple of people to do everything which you normally do during a typical week.
  • Keep this list handy, such as taped to the refrigerator or in your wallet. Make sure that the list is convenient as you may need someone else to help activate your backup team.

Stockpile supplies:

  • Keep easy-to-prepare foods in the cupboards and freezer. Packages of frozen vegetables have many uses especially in creating easy soups. Cans of soup (low sodium), kidney beans or lentils, stewed tomatoes, and spaghetti are also very handy to have around. Also, get into the habit of preparing meals and freezing portions for future use.
  • During steroid treatments, it is important to have plenty of fluids to drink. Drink mixes are handy to have around. Fruits and vegetables provide excellent nutrition and help to alleviate water retention.  Avoid processed foods (including crackers) which are very high in sodium.
  • Keep plenty of toiletries on hand so that you do not need to make extra trips to the store while you are home recuperating.

Seek medical treatment:

  • Add your neurologist’s phone number to your back-up team list. Call the doctor’s office to schedule an appointment as soon as you think that you are in a relapse. Be prepared to receive three to five days intravenous steroids.
  • If you do need steroids, drink plenty of fluids, eat potassium-rich foods, avoid processed foods, and do not make any big decisions. Remember that steroids may cause insomnia and severe mood swings.

Pace yourself:

  • Plan to take things a bit slower for at least two weeks, especially if you require steroids. Although you may begin to feel better quickly, take it easy.
  • If you need physical therapy to regain strength and coordination, pace yourself and work steadily. Do not try to overdo it too soon.

Be patient:

  • Keep in mind that life will get back to normal in due time. Be patient with yourself and with those around you.
  • Be encouraged that you will be able to overcome and adapt to each new challenge as it arises. It may take a lot of work and require adjustments, but patience and persistence will pay off.

Remember that you are stronger than MS.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

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)
  • spuds
    1 month ago

    It takes me so long to recover I get very discouraged. I’m also waiting to see if the symptoms of a relapse become permanent and part of my new normal. Thank you for your article. What I am reading here is patience. I will try to be more patient with myself.

  • spacecake
    3 months ago

    Thank you so much for this post – I am newly (10 weeks) diagnosed – and these words were so needed

  • staceyspencer
    7 months ago

    I want to know, how do I know when or if I get a relapse? I have googled and asked and no one seems to know the answer or come out with a straight answer.

  • Lisa Emrich moderator author
    7 months ago

    Hi Stacey,
    A relapse is marked by a worsening of old or appearance of new symptoms. To qualify as a relapse, the increased symptoms must last for at least 24 hours. Sometimes being ill with a fever, or getting overheated, can increase symptoms temporarily. When this happens, it is called a “pseudoexacerbation.” Symptoms will usually go back to normal when the body temperature or infection resolves. Pseudoexacerbations are not treated with steroids. Not all relapses need to be treated with steroids. If in doubt, always call your neurologist’s office to report new or worsening symptoms. It’s important to have that information in your medical record. I hope that this helps to explain what constitutes a relapse.
    Lisa

  • Candy
    5 years ago

    These are wonderful tips. I have most of them done. Another idea is keeping your meds at hand. (Safety first with children!!) We’ve also moved the microwave to the counter so it’s not so difficult to reach and safer for me.
    Best wishes to everyone,
    Candy

  • ms summer
    5 years ago

    I am “getting over” my first ms relapse that required a 10 day infusion of i.v. steroids. I was diagnosed with relapsing remitting ms in 2006. This all happened as a result of moving from our 2600 sq.ft house that we had lived in 20 years, to a 1,000 sq.fter. in a different town same state.Colorado. I am blown away by all that happened to me and my family.How hard and the pain so very intense I truly wanted to die. It was the worst thing that has ever happened to me,or my close family,husband of 37 years,three children and still living Mother of 91 yrs old.

  • JulesPMH
    5 years ago

    These sound like excellent tips and would make exacerbations SO much more bearable…

    Then there are many sufferers who are not fortunate enough to have such a support system…I am my husband’s only caregiver – then 2 1/2 years ago, we were in an accident and I suffered a neck injury, and have been suffering chronic pain ever since – managed (barely) with meds, but he is more a caregiver to me now, and we just limp by during his exacerbations…fortunately, he was diagnosed and began treatment just after the accident and they have been much less serious physically…I don’t know what would happen if he ended up in his power chair again…

    We are both teachers – I am full time and he is a sub, which means he doesn’t get paid if he can’t work. He has faced quite a bit of lost pay when he DID have to take time off, but he has also forced himself to work when he shouldn’t have, because we couldn’t afford for him not to. Since the accident, he has covered for me many days when I needed a sub (usually when he was healthy)…and we finally decided we couldn’t afford to go without disability insurance, only to find out that we could not get coverage for him. If he goes out, he might get SS disability which will be less than half what he was making as a sub which we already couldn’t live on…this is after he graduates next January after SEVENTEEN YEARS persistence to finish college to become a licensed teacher at 36.

    As much of a pity party as this post was, I didn’t intend it to be. I really did like the ideas here, and they could make our lives a lot easier. It also reminded me that there are a lot of people that, like us, are all alone out there, or likely only have one caregiver to depend on, so when an exacerbation hits, all that responsibility on that list you made…falls on ONE person who already has a list all their own…it’s a beautiful idea to delegate to a village, but it’s all the more sad and lonely when your village is population 1 or 2 – especially if no one is healthy!

    P.S. It takes us 2 months to get in to see the neurologist from the 1st phone call – and about 5 reminder phone calls to get a referral set AFTER the visit. . . this “calling as soon as you sense an exacerbation thing” was adorable! – but for us it’s over by the time you get in…LOL!

  • Rendeanne
    6 years ago

    Great article with excellent tips and strategies. I have a similar list but you have added a few that I had not thought of to make the healing process easier. Thanks for sharing these great ideas!

    Ren

  • Lisa Emrich moderator author
    6 years ago

    Thanks, Ren. Relapses have always hit me hard. Sometimes it’s hard to think about healing when everything’s going on, but it so very important. We deserve to do that for ourselves.
    Lisa

  • noellewright00
    6 years ago

    Unfortunately for me, I’m allergic to Solumedrol. Every time I’m in need of Acthar Gel, it takes about 2 weeks to get b/c of insurance/pharmacy problems. So, it takes me significantly longer to recover. Not to mention, that a few of my co-workers aren’t sympatric of my need for time off work. I’m afraid that I won’t make it another two years to get my 5 year longevity pin 🙁 But ohh well, got to stay positive!

  • jordandossett
    6 years ago
  • Lisa Emrich moderator author
    6 years ago

    Jordan,
    These are some fantastic resources. Thank you so much for sharing!
    Lisa

  • Lisa Emrich moderator author
    6 years ago

    Noelle,
    That’s disheartening to hear that it takes so long to get the Acthar Gel. It’s important to start treating a relapse quickly. I hope that it’s a long time before you need to go through that process again.
    Be well,
    Lisa

  • Laura Kolaczkowski
    6 years ago

    Thanks, Lisa, for those tips. Emergency preparedness applies to our health, too.

  • Lisa Emrich moderator author
    6 years ago

    Hi Laura,
    For me personally, the hardest part of this process is relinquishing control to others. But that is something which I have tried to learn to do. I’m fiercely independent, but when an emergency, or a relapse, happens, I need help. Being organized helps me to feel like I’m still somewhat in control. 🙂
    Lisa

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