What does it feels like to have Multiple Sclerosis?

What does it feel like to have Multiple Sclerosis (MS)? I get asked this by family, peers, teachers, and yes, even doctors.

First, what is MS? The translation of Multiple Sclerosis literally means “multiple scars”. Now, in my own words, MS is an inflammatory autoimmune disorder. Instead of a healthy immune system that fights off a cold or an infection, people with MS, have an immune system that attacks their own healthy myelin sheath (protective coating around nerves). Over time, this demyelination causes multiple lesions throughout the brain and/or spinal cord. There are 4 types of MS. This is a large factor as to why everyone with MS looks and feels different, but the similarity of this painful autoimmune disorder is the infamous hallmark trait, “unpredictability”.

Random tip of knowledge: 85% of people have diagnosed with MS will have “relapse remitting” and about 15% of those will eventually progress to Primary Progressive. Find details here

Symptoms differ upon everyone. MS is such a unique disease and effects everyone differently. No two people are exactly the same, although there are similarities between people. Keep in mind there are 4 types of MS. The symptoms differ so greatly since lesions can be anywhere on the spinal cord and/or brain. They vary in length, width, & density. They can be on different parts of the brain/spinal cord causing different symptoms and this why it is such an individualized experience.

In this post, I will be writing about my personal experience. We must keep in mind throughout the post that everyone is different, although many people share similarities.

My MS was caught late. I was actively searching for a diagnosis for 8 years while living in chronic pain as a young adult and teenager for 13 years. ( I am 25 years old currently-diagnosed at 25 in Sept, 2018). You can read more detail in my journey to an accurate diagnosis here. It is not uncommon for it to take a long time to get diagnosed, as MS disguises itself as many things, such as Lupus for example.

Another issue I faced, and continue to deal with is that people do not take my chronic pain seriously because of my age. I look young so they think I am exaggerating or being dramatic. This is a re-occuring theme in my life and it has led to malpractice, and a strain on personal relationships. I have recently visited several doctors specializing in pain management that will not treat me due to my age. They feel that it conflicts with their moral values.

My MS feels like chronic pain everyday, It is worse in the morning and gets better after I take medication. Throughout the day it is unpredictable, hence the name “the unpredictable illness”. A month ago, and it was this way for the majority of my life- I had energy until around 3-pm 6pm I feel like I need to go to sleep because my body is shutting down. Now I lose energy around 11:30-12pm and need a nap.

My worst symptom, my first symptoms, and the one I have everyday is the MS Hug, This is a very common neuromuscluar symptom that is most likely due to muscle spasticity. The MS Hug feels like a tight band that constricts around the chest and/or the abdomen. My pain roots in my right hip, comes around my abdomen into my lower back. Before I knew this pain was attributed to MS, I described it is a person squeezing my hips with all of their strength while simultaneously having the worst menstrual cramps of my life. This description still holds true, only now I know that it is due to the MS Hug. I have it everyday and it is excruciating. However it is a huge relief to know where it comes from.

Symptom #2 from all of this pain, I have extreme fatigue. It really takes a toll on me and I sleep a lot or I do not have the energy to do things many moms do. I feel a lot of guilt.

Neuropathy in my hands. My hands are in chronic pain.

Involuntary muscle movements in hands. My hands tighten around objects. Ex: Let’s say I am holding your hand. 1 minute later you’re screaming and saying “owch!” from my grip. I let go, not realizing I did this. Then my hand turns inwards

Fine motor skills come and go. From holding my keys to counting change, I usually do it with a fist and see the frustration in people’s eyes. If they only knew….

Sciatica and chronic lower back pain from lesions in cerebral spine.

Jolts and jumps from muscle spasms especially at night.

Eye sight goes quicker than most.

On really bad days I use a cane. I am accepting it now because it makes me feel better quicker.

…but most of all i feel Guilt. I have never been able to play the way other mom’s play with their children. Often times I am too tired to play at all. I know my daughter has a happy and healthy life, but we have to do things our own way to accommodate my lifestyle. I feel as if the household revolves around me, when it should revolve mostly around my 6 year old. MS has made her grow up quickly. She is so hyper-aware of my pain that she offers to massage my back and my hands. A six year old should not have to assume that responsibility. She always says “I like to, I want to!” so sometimes I do not deny her offer. Most of the times I tell her no thank you, and to keep playing. When she sees me walking with my cane and I am heading towards paralysis, I hold her hand as we cross the street and then she rubs my back. I am so greateful to have a daughter who knows me so well and is already educated on MS, but I know that she will never have “normal“ childhood memories with mom. I do my best, but I worry that it is not good enough.

What I want people to take away from this is to stop telling those that are suffering from an invisible illness that they are dramatic or exaggerating. Listen actively with openess. Chronic pain is very real. Having to constantly tell people that we are in legitimate pain and lying, actually puts us in more pain. Stress makes an autoimmune disorder go haywire from all the inflammation.

If you are an able-bodied person and you know someone is struggling, take minute and try to empathize. Life will be so much easier.