Day Four MS Awareness Week - The Fatigue Monster

Today I want to talk about Fatigue and MS (dramatic music plays). 

(putting aside the fear by sharing a funny Korean baby) 

This is me with my big head (not really) cause I'm Korean (that's real).

Everyone OK? Good. Fatigue is one of the most common symptoms of MS. It's also (in my opinion) is one of the most debilitating. 80% of those diagnosed with MS will suffer from fatigue. We even have a a cool name for the type of fatigue we have it's called Lassitude (it has it's own name - how great right?). This type of fatigue is characterized by the following:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

The other amazingly fun thing about MS fatigue is that they don't know what causes it. As you know, you can't effectively treat something when the cause is unknown, just like MS itself. Fatigue is my worst symptoms of MS. When I push myself to far, either at work or home, not sleeping enough, or horrible amounts of stress, my fatigue can get so bad I can't function. I fell asleep at a stop light once after a very stressful week at work. 

There are ways to combat fatigue - such as keeping cool, but fatigue can just come on and overwhelm you. I think I've said it before but it feels like someone has thrown a wet blanket on top of you. As quickly as it comes I've had it leave just as fast and it's one of the oddest feelings you can have. Exercise also helps with fatigue but I'll talk about exercise in another post.

There are also medications such as Provigil (a narcolepsy medication) and Ritalin (an ADHD medication). I personally use Provigil. Sometimes it works and sometimes it doesn't. As well, you should always get checked for other medical conditions that may cause fatigue. 

If you think you need help with your fatigue you should talk to your neurologist. Before I was diagnosed with MS I would get in my car, drive to the store, and then decide walking from my car to the store was to much trouble, and go home. I felt like a fat, lazy, slob and I was so embarrassed by this that I never told a soul. After diagnosis I spoke with someone who also had MS. I asked her about fatigue and shared the story I just shared with you. She laughed and told me that had happened to her many times. I started to cry. 

So, my suggestion is talk to someone else who has MS, talk to your Neuro, and don't be embarrassed  Now with exercise and managing my stress and time, and with the help of Provigil now and then. I always get out of the car when I go to the store, much to the horror of my bank account (smile). 

MS Awareness and You

Today will be a brief post. I don't want to overwhelm people with to much information and talking about certain subjects requires that I post lengthy articles (not really but I'm long winded - smile). I thought today I would post some resources that are out there for those of us who have MS and for others that may want to help. 

I will have to say that the National Multiple Sclerosis Society is one of my go to sights. It has a lot of information and offers programs for people with MS. It also holds fundraisers. Yes, I know what you're thinking but in order to further research and awareness money is unfortunately a needed evil. 

National MS Society

The second is the Multiple Sclerosis Association of America. I'm not as familiar with their website. However they do offer cooling equipment program that helps with the cost of vests and other cooling devices. 

MS Association of America

This link is for the cooling device program.

I will leave you with one last thing. This book Multiple Sclerosis for Dummies was the best thing I bought for myself when I was first diagnosed. They have updated it since then (this is the second edition) and it is worth its weight in gold. Click here to view it on Amazon MS for Dummies.

Day 2 - Bad Things or What Can Affect Our MS

Today I want to talk about external factors that can affect MS and then I'll discuss my own experiences with these lovely things that we have no control over (smile). A general note Fatigue, which I will talk about in a future post, is related and is exacerbated by all of the things I'm going to write about in this post. We'll get to that though, we have five more days (smile).

Let's talk about heat first. 

Heat usually affects those with MS. I say usually because I know some people don't have a problem with heat at all but they seem to be the exception. I don't want to exclude them though, so you never say the horrible world ALWAYS (smile).

When someone with MS gets over heated a multitude of things can happen. One of the scary things can be a pseudoflare. This word literally means fake flare. This is when old symptoms rear their ugly head. For me this unfortunately usually means my eyes. Which really is a pain if I'm at work trying to read something on a computer screen, or ya know drive. Now, when I say overheated most people think of extreme heat. This isn't the case. Research has shown that even a 1 degree change can affect people with MS.

The good thing is usually once you've cooled down your symptoms will go away. There are also other things you can do to stay cool. Having ice water around helps tremendously. I don't believe most thing of that. The ice water cools you down faster and it was a great tip from my physical therapist. You can also do the normal things. Try to plan ahead, go inside or to a cool area to cool off, or use a cooling vest. These are vests that carry ice packs. Really awesome little thing.





For those that don't know I run. That's me to the left. The sad thing? Yeah, that's probably what I look like. Living in Florida and having a problem with heat this presents a problem. So, this is what I do.

• I wear really breathable light clothing. I also wear the least amount I can get away with legally (laugh). 
• Stay close to home so I can jump in the shower and cool off instantly (I do this after a run no matter what)
• Have ice water with me or put ice water along my running route
• Plan my route if I get to hot I will stop at a local business like a book store, peruse the books, cool off, and then run again. 

Now lets talk about stress. 

Stress is bad that is all (smile). Actually, stress does the same thing heat does, psudoflares and all that loveliness. I personally have a recent example of stress messing someone with MS up. Myself.

Right now I am sick and on the order of my doctor at home not working. Why you ask? Stress. Now, I don't believe that stress normally does this to people with MS. I believe that overwhelming long term stress does and how you deal with stress. Personally I've had over six months of constant stress, job discrimination, changing jobs, layoffs, not to mention normal life stress and my body finally called a timeout. 

I wont bore you with the normal stress relief techniques that you can read about on hundreds of websites (and probably have). I will discuss my big stress reliever exercise. 

I am an advocate of people with MS exercising. Yes, yes (holding hand up) I do realize that not all of us function at the same level but everyone can exercise. Even raising your arms above your head can be considered exercise it just depends on your level and what you can do. 

This is my cork board. All of these races were completed after I was diagnosed with MS and these aren't all of them. 

This is a  link (CLICK HERE) to an article about my good friend Patrick Finney Not only does he have MS but he has run close to 80 marathons and has done ultra marathons and two marathons a day! Read about him he was in a wheel chair and weighed 300 lbs at one point. 

Don't let the stress or the heat keep you down. Everyone with MS can live a productive life and you can modify things to allow you do keep accomplishing what you want to accomplish.