Category Archives: Fatigue

Explaining MS Fatigue

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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.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Fatigue & MS

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“What it is—What to do”

“People look at me and just cannot understand why I get so tired.” (MSer comment, March 2011) This is a quotation I used in a chapter about fatigue in my book, Managing MS: Straight Talk….”

During a brief conversation with my sister last night, she remarked that she had no energy, she couldn’t think clearly, and all she wanted to do was lie down because she felt so exhausted. She has a virus. I got it—I knew exactly how she felt.

I often describe MS fatigue to people that it is like having a cold or virus—that you feel so exhausted all you want to do is lie down. Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved to understand and know what to do about it.

But fatigue is extremely difficult for a non-MSer to understand because you can’t always see it—there is no stuffed up nose, swollen eyes, or sneezing. Or, someone may say “you look tired, maybe you should take a nap.” Okay, a nap may help, but fatigue isn’t only due to being sleepy.

It doesn’t matter if the MS case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is almost always present with MS, 24/7. Why? Fatigue exists because it is caused by MS–a disease, a chronic illness–and it causes other symptoms such is walking problems to intensify.

Fatigue is the hallmark symptom of MS. It is a universal complaint by 80–90% of MS patients. And it is finally being recognized as a serious obstacle for employment by the Social Security Administration when applying for disability benefits.

• A MSer will get fatigued easily, whether other symptoms are present or not. Simple activities like making dinner or talking on the phone too long can be exhausting. The slightest thing can make it worse, such as not eating, drinking enough fluids, or being overheated.

• Fatigue is compounding and escalates quickly if MS becomes active due to a relapse, or the amount of disability has increased over time. For example, sleep disturbances due to bladder problems at night, or extra effort required to walk because of spasticity or other gait problems, will impact fatigue significantly. Energy is reduced, weakness increases. This causes stress, frustration, and depression that will then lead to even greater fatigue.

• Fatigue is often caused by medications taken for other MS symptoms.

Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. Yesterday I came across an article entitled What You Can Do About Fatigue From MS, and is worth a read. It is from a blog I subscribe to called Stu’s Views & M.S. News; the source of this article was WebMD. Here’s the link http://bit.ly/Wrk8M9 .

There ARE many ways we can help to manage fatigue, and even if some do not work, other things may. At least we can try and keep on hoping.

www.DebbieMS.com
Author/MS Counselor/Living with MS