How to Manage the Invisible Symptoms of MS

  • by Kimberly J.
  •   September 05, 2016

Kimberly J. is a paid employee of Teva Neuroscience, Inc.

Think about the last time you saw someone at the store with an apparent physical challenge. They may have been pushing a double stroller or using crutches. You probably noticed people going out of their way to be helpful. It’s not unusual for people to go out of their way to assist someone who clearly needs a little more time, help or patience. But what can be done when symptoms are not so easy to see?

Seek Support

One of the challenges of living with relapsing MS is dealing with the invisible symptoms of the disease. These can include weakness, pain, fatigue, depression and cognitive difficulties, among others. Because these symptoms are not easy to identify visually, it may be difficult to get the support you need.

The first thing to do with these invisible symptoms is to talk to your doctor. Once the source of the symptom is found, it is possible that a conversation with your doctor may help. 

It is vital the MS patient take an active role in their treatment. If it is appropriate, educate others about your needs. They might not understand why you have a handicap designation on your car. Likewise, they may not understand that many MS patients have good and bad days. It’s understandable that someone might be confused if they see you walking on a treadmill one day and needing to take a mid-day nap on another day. When it comes to MS, what you see is not necessarily what you get.

Focus on Strengths

Dealing with these symptoms can be frustrating, but it can be done. If fatigue is an issue for you, keep a log of your energy levels over several days. Is morning your best time? If so, plan activities around that time of day. Work from your strengths and pay attention to your symptoms. If you have noticed a change in your cognition, don’t be afraid to write yourself notes. If you have a smartphone, you might place reminders there. If you are comfortable doing so, enlist the help of family or friends.

If you are caring for someone with MS, it is always a good idea to keep these invisible symptoms in mind. It’s not uncommon for patients to have frustration or depression. Sometimes they just need someone who will listen. If appropriate, advocate for the patient and provide education to others.

Finally, be good to yourself. Know that there will be good and bad days and don’t be afraid to ask for help. Remember, you are not alone!  

Kimberly J.

Shared Solutions® Nurse

About The Author

Kimberly J., RN has been a registered nurse for 4 years specializing in multiple sclerosis for one year.

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26 Comment(s)
  • Cameron | September 17, 2016
    It is true weakness come every now and then
    • Teva's Lift MS Team | September 19, 2016
      We understand living with MS adds extra challenges to life, Cameron. We’re so glad you’re here and hope you find helpful support.
  • Pam | September 30, 2016
    MS is a very frustrating disease. I get so tired of hearing "you sure look good". On the outside, yes I try to keep myself well groomed but if people only knew what it takes me to do that. Then there's the chronic pain where my it huts from head to toe on a daily basis. I just wish there was a way to educate others on this so I don't always feel like everyone thinks I'm making it all up.
  • Kim | September 30, 2016
    I've been a night nurse for 38 years. I've been a MS patient for 9 years.
  • Cindi  | September 30, 2016
    Thank you for your kind words I just wish everyone understood this
  • Celeste  | September 30, 2016
    This is a renforcement of what is so true. The depth of sincerity in people is way more shallow than when I was first dx. Most don't have or want to take the time to understand. Hearts have grown cold and withdrawn from such fast pace of life. Especially when you cannot "see" anything physically wrong.
  • Judith | September 30, 2016
    Thank you some of these I did not realize where affiliated with MS.
  • Beverly Benter  | September 30, 2016
    I can relate to all.
  • Amy | September 30, 2016
    Thanks.
  • kate | September 30, 2016
    Thanks I'm still waiting but m y neurologist is still running tests. Have alot of the symptoms but it didn't show up in my spinal tap .
    • Teva's Lift MS Team | October 03, 2016
      An MS diagnosis can be an emotional experience. It's great that you're here and we hope you find others in the Lift MS community who can relate.
  • Tanya | September 30, 2016
    Symptoms are often invisible. I have people tell me but you look so good and my reply is simply "Thank you." If we really stopped and thought about how bad we would look if others could see our pain, discomfort, confusion and frustration we would never want to leave the house! Most often I am glad that MS most of my MS symptoms are invisible!
    • Teva's Lift MS Team | October 03, 2016
      We understand living with MS adds extra challenges to life, Tanya. We’re so glad you’re here and hope you find helpful support.
  • Luanna | September 30, 2016
    Thank you for your blog post, sometimes I get frustrated with myself and my MS symptoms weakness, fatigue, muscle cramps, tremors. Forget it's OK to ask for help and hard to deal with them! :)
  • Marilyn  | September 30, 2016
    Very interesting pain comes and goes often with me in whole body
  • Anita | September 30, 2016
    I have found myself getting better balance, energy, less pain and mentally sharper by doing a water aerobics class 3x's/wk. I use a walker but in the water your body is 90 % lighter. It is building up my core and mentally is making me feel good as I inspire others to come exercise.
    • Teva's Lift MS Team | October 03, 2016
      Finding an activity you enjoy can make all the difference, Anita! Be sure to consult a healthcare professional before starting any exercise program.
  • Melissa | September 30, 2016
    Me in a nutshell...lol.
  • LaReane | September 30, 2016
    What a wonderful article. Aside from MS, I just found out I have SLE (Lupus) and to compound matters, let's add Polymyalgia Rheumatica to the mix.
    Thank you for taking the time to write such an informative and helpful article.
    LaReane
    • Teva's Lift MS Team | October 21, 2016
      Hi LaReane, we're glad you found this article helpful and we welcome you to Teva's Lift MS community! We encourage you to stay in contact with your health care provider as you navigate multiple diagnosis. Since you found this blog helpful you might also enjoy our Lift MS Facebook page https://www.facebook.com/LiftMS/.
  • Sandra | September 30, 2016
    I have had relapsing MS for about 33 years, 23 diagnosed . I suffer all the invisible symptoms, sometimes I feel my own family forgets, , and just keeps on expecting me to go and do. They comment like " your not like you use to be, or your so tired these days, you need to go and do more". Although once in awhile I'll remind them, it doesn't stick with them very long. I'm just tired !
    • Teva's Lift MS Team | October 03, 2016
      It sounds like you’ve been through a lot, Sandra. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Julie Carbine | September 30, 2016
    I really enjoyed this....
    Thank you
    • Teva's Lift MS Team | October 03, 2016
      Thanks for your kind words, Julie! Comments like yours fuel our efforts to build a helpful community.
  • debbie | October 01, 2016
    I just wish there was this much help for my mom. She suffered with MS for 42 years before she died. She was 83 years old. I took care of her since I was very young. Believe me, the ups and downs were many. It is true, she looked beautiful in face but she suffered so. She did suffer depression most of the time but I wouldn't let it get to her. I filled her life with arts, crafts, baking, cooking.
    • Teva's Lift MS Team | October 21, 2016
      We are sorry for your loss; it sounds like you have been through a lot. We're glad you're here, Debbie, and hope you can find comfort and support in the Lift MS community.
  • Lori Andrews  | October 02, 2016
    Thank you so much for sharing this about those of us who suffer with MS! Sometimes your family doesn't want to know what you are going through! I find it difficult when others do not understand or want to discuss your pain and the disappointment you feel when you no longer are able to be the person you were before being blindsided by this roller coaster of a life you now face
    • Teva's Lift MS Team | October 03, 2016
      Lori, it’s hard when you can’t go to family for support. We hope you’ll lean on the Lift MS community for support when you need it.
  • Jim  | October 04, 2016
    I was DX 8 years ago but based on symptoms I have probably been active for 15 or 20 years. I just waited until they became severe enough to be a problem before I went to the doctor. Listening to others I guess I am very lucky at this point because I am still able to compensate for most of my physical problems. i also have a wife of 35 years that understands and is there to help.
    • Teva's Lift MS Team | October 05, 2016
      We are so glad you’ve chosen to share your experience with us, Jim. Please keep us posted on your progress, and best of luck!
  • Cindy | October 04, 2016
    Good overview.
  • Jennifer | October 04, 2016
    It can be difficult for some people to understand the unseen symptoms. I am one of those type of people that have MS. I have certain people in my life, that don't understand. Why, sometimes daily tasks are an issue for me. I have to say no sometimes I can't do something. Because of an MS issue. You can't see it on the outside. But, I am battling it on the inside.
    • Teva's Lift MS Team | October 25, 2016
      It sounds like you've been through a lot, Jennifer! We're so glad you are here and hope you continue to lean on the Lift MS community for support. You might also enjoy checking out the Lift MS Facebook page. You can find it here: https://www.facebook.com/LiftMS/ Best Wishes!
  • Kathy | October 05, 2016
    Very encouraging. Its true about how your symptoms do not always show. A lot of the time for me when symptoms occur I get very quiet and try to lay down if possible. People ask what is wrong? I usually say I have a headache. This is so I do not have to explain that I am tired, or that my legs may feel weak, or whatever it may be. Just a little quiet time usually helps.
  • Dianne | March 17, 2017
    Very helpful. Thankyou
    • Teva's Lift MS Team | March 20, 2017
      We’re happy to hear that you liked the post, Dianne.
  • Nancy | June 30, 2017
    I was diagnosed At age 49. I was a nurse for 30 years. Then, I feel like the rug was pulled out from under me. I had symptoms for a year like slurred speech , forgetfulness, falling and couldn't see out of my right eye. Later I found out people thought I was drinking or drugging at work. One nurse picked up on my change in speech and balance. I was Dx'd pretty quick. My life has done a 180.I'm sad
    • Teva's Lift MS Team | July 03, 2017
      We want to let you know that we are here for you, Nancy. You’ll be in our thoughts.
  • Dina | June 30, 2017
    Thanks for info. Summer heat is a real kicker.
    • Teva's Lift MS Team | July 03, 2017
      We are happy you are finding value in the blog, Dina! Please continue to check back for more info.