November 6, 2014
Ninety percent of patients with MS suffer with fatigue. Fatigue is an extremely debilitating MS symptom and difficult to manage.
MS fatigue is more than being tired from a lack of sleep or a very busy day. It is a direct result of the disease itself, and is easily intensified by the other MS symptoms (such as extra energy required to walk), external factors (such as heat or dehydration), and health issues (such as colds/viruses, being overweight…).
Being an invisible symptom, fatigue is hard for people without MS to be aware of it, understand it, and realize the severe limitations it can impose on MSers.
I started an MS group discussion on LinkIn entitled “How do/would you explain your MS fatigue to people to try to make them understand it?” Over fifty comments were received to date, and here are some of the comments:
“I tell people that it is like the exhaustion you get when you have the flu- only multiplied by 20 and NEVER goes away…”
“I heard it explained once and it seemed exactly right. MS fatigue is using every ounce of energy in your body just to breathe.”
“Add 5 lbs. weights to both biceps, forearms, calves, thighs…etc.”
“There is no way to explain it properly. Everyone still thinks it’s just plain tiredness. They don’t get that fatigue is totally different. I once said “when I am fatigued and am in bed, sometimes I feel that peeing the bed is my only option.”
“I ask them to imagine they are coming down with a flu/cold, then recall how tired they are.”
“There is no explaining to others why my body needs to sleep when I have only been awake a short bit.”
“I liken it to hitting a brick wall so hard that you don’t bounce back but instead just slide to the ground and not able to pick myself back up.”
“People just don’t ‘get’ the difference between extreme fatigue and general tiredness – some think they are feeling the same as you are but they don’t know the half of it!!”
“Thank you guys so much for this discussion! I hear all the time “Well, I have trouble sleeping too… maybe you should just go to bed earlier.”Errrrgh! It’s not like that people!
“I tell them that my best day fatigued (tired) is like their worst day. Then they seem to get it.”
The truth is, most people don’t get it. But the upside is that our neurologists and peers DO get it, and that’s where we can get our comfort. And fortunately, fatigue is a symptom that is finally recognized by Social Security when applying for disability benefits.
For those that don’t get it, you can try handing them a copy of this post or a previous post of mine entitled “Fatigue and MS”. It never hurts to try.
Author/MS Counselor/Living with MS