Dreams are a wildcard—whether you are living with MS or not. For some, dreams are an escape from the physical limitations of life with multiple sclerosis. Others experience something different when they go to bed. Good or bad, the dreams and nightmares tend to have one thing in common: They are extremely vivid.
To find out more about these experiences, we reached out on the MultipleSclerosis.net Facebook page, and we asked: “Has MS ever affected how you dream or what you dream about?”
More than 300 people in the community commented. Here is what they said.
“I never have to use my walker in my dreams.”
Many shared that in their dreams, they move freely—without the cane, walker or any other aid. In their sleep, they get the peace that comes with escaping any physical limitations.
“I am walking without my cane and I can go everywhere. Up and down the steps. It feels awesome. Then I wake up to my reality.”
“In my dreams, I am always walking and running. I am wheelchair bound, so I love to dream!”
“My dreams involve all sorts of activities I have never done.”
A few others shared that since having MS, their dreams now allow them to have new experiences. In dreams, they take on all sorts of new challenges, from travel to new sports. Thank goodness that this diagnosis does not affect the brain’s creative powers!
“Definitely! My dreams involve all sorts of activities I have never done: skiing, scuba diving, flying on my own, ice skating, running, etc… It is so liberating!”
“I have horrific nightmares.”
For others, dreams are anything but peaceful. Some people believe that dreams are the subconscious working through whatever the waking mind cannot process. This makes sense as to why many people face nightmares, as MS is something that can be hard to accept or understand. Alternately, it is possible that something in the chemistry of having MS makes one more prone to nightmares.
“My 13-year-old son has MS. He has had night terrors since he was an infant.”
“I do not dream at night because of my meds. But, every single time I take a nap I have horrific nightmares.”
“As the nightmare progresses, I slowly lose my ability to walk.”
Some have shared that their nightmares mirror or exacerbate their experiences with MS. In their sleep, they experience the full progression of MS. Others dream of the worst-case scenario with the disease. Still others have MS in their dreams, and their mind creates nightmares, possibly related to their deeper fears.
“I have reoccurring nightmares where I am completely fine in the beginning, but then as the nightmare progresses, I slowly lose my ability to walk (I am wheelchair bound now), and something is always chasing me.”
“I recently had a dream my MS sent me to a mental hospital. I went crazy and deaf as well… and was also slurring my words. It was so awful it affected my mood the whole day.”
We want to say thank you for everyone who shared about their experiences with dreams and nightmares while living with MS. Without them, there is no community where others might find comfort and connection.
I have been having disturbing dreams. Rarely had these unsettling ones before my first two Ocrevus half doses. They leave me in a strange vulnerable mood. Connected to infusion reaction or coincidental?
Hi Johanne, thank you for reaching out to the MSAA. I am sorry to hear about the dreams you’ve been experiencing. It’s a really good question of whether they are possibly related to your Ocrevus infusion doses, or perhaps coincidence. I would suggest talking to your doctor about this, especially if the dreams continue, or possibly talk with one of the nurses on the Ocrevus patient assistance line, phone (844) 627-3887. It may also help to talk to others living with MS about this as well to see if others have experienced something similar. You can do so on MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. I hope this information is helpful to you Johanne and thank you again for reaching out. Take care, Angel, MSAA Client Services Specialist
My husband was just diagnosed last year with MS although we found MRI results that confirm he had it for 9 years and left untreated. I too have noticed that he is having many night terrors and wakes up screaming after he has started the Ocrevus. He has never had them any time before the infusions even though he has had MS for 9 years. The sounds he makes are literally terrifying and scare me and my daughter to death when we hear them.
I was recently diagnosed with MS in January and it is now August. I started my Ocravus infusions eight weeks ago and just did my second infusion. I have been having nightmares that involve situations in life that I have trouble dealing with. Last night while having a dream I hit my wife and it made me feel horrible and I don’t know if it was caused by my injection or if it is just a side effect of having MS. I don’t really know what to do so I was looking on here hoping to find an answer.
Hi Josh. Thank you for reaching out. We understand that starting a new disease-modifying treatment can come with many questions and concerns. We suggest connecting with others on our My MSAA Community platform: https://mymsaa.org/msaa-community/my-msaa-community-forum. We also encourage you to reach out to our very dedicated Client Services Specialists via our Helpline at (800) 532-7667, extension 154, via email at MSquestions@mymsaa.org, or via online chat at https://mymsaa.org/mschat.
I have been on Aubagio for 5 years and I have constant unsettling nightmares. I am always fighting for my life in the terror dreams and grit my teeth so bad that I ruptured one of my centrals. Has others on Aubagio had nightmares ?
Hi Timothy. Thank you for reaching out; we are so sorry to hear about your unsettling experience. We understand that disease-modifying treatments can create many questions and concerns. We recommend that you contact your physician with any questions regarding your medication. Also, if you would like to connect with others, we have an online peer-to-peer forum, My MSAA Community platform: https://mymsaa.org/msaa-community/my-msaa-community-forum. Additionally, our Client Services Specialists can be reached via our Helpline at (800) 532-7667, extension 154, via email at MSquestions@mymsaa.org.
I also have MS and was diagnosed 2 years ago. I started receiving injections of Ocrevus about 2 years ago. I experienced my first nightmare this month 5 days following an infusion and believe it could be related to the infusions, but I am not sure. I am afraid to get another infusion because of the nightmare. I honestly do not know what to think and do not know if these nightmares are in any way related to my infusion.
I have the most wonderful vivid dreams. I don’t want to wake up. I like my dream life. There’s no problems everything is just wonderful. I take glatopa. Sorry for all the bad experiences everyone is experiencing. I wish you coyly have mine as well
I was diagnosed 7+ years ago. I have been on 3 treatments, the last one ocrevus. I have noticed that my dreams have gotten more vivid and lucid, I wake up exhausted from them and sometimes feeling confused. I recently read an article on studies with lupus and dreams and relations to flare-up. Has there ever been a similar study for MS patients? I know mine are way worse after a psuedo relapse brought on by heat and over doing it.
Hi Boni, thank you for sharing with us. I am sorry to hear about these symptoms that you are experiencing. MSAA recently hosted a webinar on October 21, 2024, on sleep and MS, which provides information that you may find helpful. This webinar will be available on-demand on MSAA’s YouTube and website soon. If you have additional questions in the meantime, we encourage you to please contact our helpline at 800-532-7667, extension 154, or via email at MSquestions@mymsaa.org