February 10, 2015

Putting it Into Words: What it Feels Like to Have MS.


Words don’t mean what they used to.

I have Multiple Sclerosis.

It is an ‘invisible disease’—most of the symptoms are felt rather than seen.

Like others with chronic diseases (like ALS, Diabetes, Crohn’s disease and Lupus), it is possible for me to look the glowing picture of health while feeling disconnected from my body, meanwhile quietly wondering how socially acceptable it would be for me to lay down on the footpath and sleep.

This makes it difficult for me to explain to family, friends and co-workers how I feel, and for them to understand how sick I am. This made me realize the extent to which the words that I use to describe how I feel no longer mean what they used to.

So, here are new definitions for what I (and others with chronic diseases) often feel.

Hot: You know that feeling when you have exerted yourself (say after going for a jog or to the gym) and you need a few minutes to cool down? Well, for me that feeling can occur at anytime, even sitting on the couch). My body either fluctuates temperature wildly (to the point where I give off heat discernible to those around me) or it simply shuts down and I sleep (or pass out).

Cold: My senses lie to me, and I sometimes feel cold internally…it is like iced water being poured down the inside of my skin. This can occur all over my body or just in whatever limb happens to be playing up at the time. It has nothing to do with external temperatures—it could happen when I am sitting in front of a heater.

Tingling: This feels like an electrified feather tickling the inside of my skin. This is the least painful but most irritating sensation…I tend to find myself wringing my hands or rubbing the part of the body in question hoping to massage the feeling away.

Pins and needles: Imagine a standard case of pins and needles in your foot or hand, and then ramp up the intensity over a larger section of your body. And then consider the fact that the feeling is likely to get worse and may not abate for hours or days. It is maddening.

Numbness: This is the most disturbing sensation. It feels like hitting your funny bone and immediately grabbing it, waiting for the simultaneous pain and numbness. But that lasts for a few seconds or maybe a minute. This numbness can last for days, spreading throughout the body. It can be maddening.

l’Hermittes Sign:  When I get hot or fatigued and I bend my neck down, a spasm of (what feels like) electricity shoots down my spine. The more hot or fatigued I am, the more violent this is (sometimes shooting all the way to my toes and fingertips).

Fatigue: There are no words for real fatigue. A good nights sleep means nothing. A week resting in bed means nothing. Suffice to say that lying down and quietly dying sometimes feels a legitimate wish.

Disorientation: This is the most dangerous, and I suppose it is more of a cognitive symptom than a sensory one. It only happens when I am already fatigued. Simply put, crossing the road or walking through a shopping centre becomes intimidating and to be honest, is a little scary.

Any and all of these can happen simultaneously, with no forewarning. Any and all may last for days, or be gone in minutes.

All are the result of one half of my body attacking another.

That is what a chronic autoimmune disease feels like.

And damn, it is tiring.




10 Life Lessons Learned From a Chronic Illness.




Author: LadywithMS

Editor: Renée Picard

Photo: oh_darling at Flickr 

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Pam Mar 10, 2015 5:03pm

I totally understand. I have the same exact symptoms/feelings and I have chronic/late stage Lyme disease. It’s difficult to answer people when they ask “how are you feeling”. I’m on a no sugar, no dairy, no gluten diet and the neuro symptoms have gotten better and I’m 6 weeks into an herbal protocol and am starting to make progress and am having more days with energy. I am also taking lion’s mane mushrooms (available on amazon) and that helps with the cognitive symptoms.

LadywithMS Feb 12, 2015 8:09pm

Thank you Eileen. I agree with you – a massage always works! Both in the short term for immediate relief, but also as something of a buffer that builds up resilience.

eileen correia Feb 10, 2015 6:24am

I feel your pain – please try massage therapy. I have several clients with MS, ALS, RA…

they get much comfort in a massage when their body allows them to get one. look in your area for a licensed Massage therapist with experience in auto immune. Best bet is a private studio, not a spa, or chain. Call and interview the therapist to get the right one for you. I wish you peace.

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LadywithMS is a former management consultant who jumped off the corporate ladder after her diagnosis with Multiple Sclerosis to pursue what she really loves: reading and writing. She is an aspiring author, is 34 years old and lives in Melbourne Australia. She blogs anonymously about multiple sclerosis in order to understand her disease and hopefully—through shared experience—help those with MS and other chronic autoimmune diseases.

Contact LadywithMS via email, Facebook, Twitter and or at her website to share your own experiences.