Multiple Sclerosis

What it Feels Like to Have MS: Part 1 Fatigue

February 6, 2018

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It’s 10 Different Answers for 10 Different People

Ask 10 different people living with MS this question and you’ll get 10 different answers. Ask one person living with MS this question on different days, and you’ll get 10 different answers. The individuals aren’t indecisive or making symptoms up. MS is just that unpredictable, ever-changing and often indescribable.

This can make it incredibly challenging to be living with MS and getting others to understand your world. It can also be challenging to be that support person or care taker for someone with MS who “looks so good” but complains of the invisible symptoms.

Isn’t everyone tired though?

Doesn’t everyone have trouble concentrating on occasion?

Everyone experiences a little aches and pain in their body, right?

Why are these symptoms so different when they happen to someone with MS?

With so many symptoms of MS being invisible to the eye it can be hard to image what it feels like to have MS… especially when on the surface “you look so good!”

MS: The Down and Dirty Overview
First, let’s get a quick rundown on MS. Multiple Sclerosis is an autoimmune disease in which the body’s immune system – designed to fight off viruses, parasites and other foreign invaders – mistakenly views its own body as an invader and attacks. In the case of MS, it attacks the central nervous system – the brain and spinal cord.

Yup, command central for the body of a person living with MS is under attack. This means that the coating of the nerves is perceived as the enemy so the immune system wants to destroy them. As a result, scars/lesions/sclerosis develop on the brain and spinal cord and disrupt the flow of information from the brain to the body and vice versa. These scars – although not seen on the surface of the body, instead only through MRIs, are real and they can cause major damage.

Depending upon the location of the scars, the symptoms may correlate.

The MS Mindset
Next, it’s important to set the stage for the mindset of someone who is diagnosed with MS. Multiple Sclerosis is an incredibly unpredictable disease. So, you may wake up one day and be completely fine and the next wake up with numbness in your arms or legs. You may run a half marathon one day and the next have trouble taking a few steps. When that settles in as the reality of your world, it can shake you to your core.

Living with that uncertainty is unsettling at best. It can propel some to live a “YOLO” life, chasing their dreams like their hair is on fire, or it can propel some to slip into a depression. Or they may shift between the two worlds.

Every person is unique. Every day is unique.

Now that we know what MS is doing to the body and the mental and emotional effect it can have on the person, let’s dive into what MS actually feels like in the body. It’s easier to imagine what you can see, so imagining what it feels like to have mobility issues is easier to imagine that which the eye can’t see – the invisible but very real symptoms of MS.

Through this 3-part series, we’ll “try on” the three most common invisible symptoms of MS:

  • Fatigue
  • Brain Fog
  • Pain

We’ll also look at how we can rely more on the foods on our table than the pharmaceuticals in our medicine cabinet to heal.

What people think it feels like

Virtually everyone in America considers themselves to be tired. As a society, we’re overworked, stressed and running on fumes. Many crave rest, deep sleep and dream of a relaxing vacation. Shouldn’t people with MS realize that everyone else is tired too?

What it actually feels like
It can be incredibly frustrating and quite demeaning when an individual with MS starts to open up to a family member or friend about their symptoms and the response is, “oh, I know what you mean, I’m exhausted too!” MS fatigue is drastically different than normal tiredness. Oh that’s a biggie and deserves an echo effect…

MS fatigue is drastically different than normal tiredness.

It’s like someone comparing the tiredness after a stressful day at work to someone laid up on the couch with the flu or probably even more accurate someone trying to wake up from anesthesia. The fatigue is far greater than you and a full body experience.

If feels like someone borrowed your body to run a marathon… and that’s when you first wake up in the morning. Some describe it to feeling like they’re wearing a 500-pound body suit. It becomes physically exhausting to simply hold your body upright in a chair. Simple movement can feel like a monumental effort. The idea of having mustering up the energy to simply shower has brought me to tears during a flare of MS fatigue.

Why it’s different
Medically speaking, fatigue and tiredness are two completely different symptoms.

Tiredness is what the average person experiences after a long day or strenuous activities. After catching some z’s or camping out for a Netflix binge, you’re feeling refreshed and like you have the energy to jump back into action.

Fatigue is not tiredness. Fatigue – especially is MS – is an overwhelming lack of energy in your entire body. Basic movements or commotion in your environment are incredibly draining. Fatigue is not relieved by sleep. You wake up just as tired as when you went to bed. Just like the disease itself, the scientific cause of MS-related fatigue is still a mystery.

Less Pharm More Table in Action
Here are some tips to best manage MS Fatigue.

  • Quit the white stuff: gluten, dairy & sugar. It creates inflammation in the body, and contributes to decreased energy levels.
  • Prayer or meditation. The practice activates the parasympathetic nervous system calming the body and mind. Studies have shown it to create improvements in fatigue.
  • Incorporate essential oils into your daily. My favs? Wild orange for a boost of daytime energy and Serenity in the evening for a restful night sleep.

Next up? What it Feels Like to Have MS… Brain Fog! Stay tuned friends. 🙂

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I'm Alene, your MS Sister.

When I was diagnosed with MS in 2016, I was scared and felt alone. But as a Nutrition Coach, I knew there was more to healing than what I was being told. I took action and within six months the lesions I had on my brain shrunk and went inactive. Now, seven years later there has been no new lesions and no new activity. As a nutritionist specializing in multiple sclerosis, I help women take back control of their future.

That’s my story, but I’m not alone. It's your turn to start Thriving with MS. I’m here to show you the way. 

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