RA Fatigue: How Does It Feel? Day 2

Fatigue is a constant topic in support groups or gatherings of people with Rheumatoid Arthritis (RA). Here's what people in my support group have been saying lately.

Joy has been having a tough time:

Just want to ask - can you tell me exactly how you all feel when the fatigue hits really hard? I feel as if my legs won't carry me about, feel so tired just want to sleep all the  time. Have a headache from hell, body just feels like its giving in.

Sorry to moan but this is the worst I felt, if it is the fatigue

Advice from Jill

That is exactly how I feel apart from the headache but then I’m not prone to them. I describe  it as feeling like all my blood has been drained and I’m too tired to even lift a drink or take pills. I also feel like I want to sleep, a lot and then I still feel tired. My advice is to just rest as much as you can, do something that you have to put no effort at all into, fave films or a fave show are my go to for fatigue flares, as there’s no effort involved at all. Rest and baby yourself through it and sleep when you need to, and keep hydrated.

If we were cats people would say, "How cute"

Everyone is always happy to hear from Julie

I am sorry you are now suffering with that AWFUL fatigue!!  I had a bad spell of fatigue last week for about 5 days and really didn't want to do anything.  If it weren't for John, I probably would have just gone to bed, but it is probably a good thing for me that I feel I have to do some things that have to be done regardless of how I feel.

 

This sounds awful but when I have that awful fatigue, I feel like I think I must have some dreadful blood disease that is turning my blood into some kind of mush.  I felt so bad last week that I told John that maybe I ought to see the hematologist again and have her run her 17 blood tests.  She did that twice before and all she could find was "anemia of chronic disease".  I am going to discuss seeing her again next time I see my Internist.

Yes, but I might not get better

Mary weighs in

It really sucks doesn’t it?! For me, this unbelievable fatigue hits, I just can’t fight it, I have to lay down. I start to feel nauseated then I start to hurt all over, I can be looking at the TV but not really getting what’s on, like I can’t even think and all I can do is lay down and sleep. A good nap does help, for a little while. One problem though is I can not get comfortable! I hate it when I’m so tired and then can’t get to sleep because no matter how I lay or sit just not comfortable. Martin says he thinks I don’t fall asleep as much as collapse from exhaustion. Fortunately I don’t get headaches very often. You are not moaning, Joy. This is our life. It is what we deal with. I feel one of the most frustrating things is people just not understanding. I know some think I am lazy, don’t care, am anti social when it couldn’t be farther from the truth. I used to be one of the most active people you’d ever meet! I worked 40 plus hours a week, would go to the gym, take care of the house and girls, bowling league 2-3 times a week, go out with girlfriends until late at night and get up after a couple hour of sleep and go go go again no problem! Now, I don’t know how I ever did it all! One day at a time. Now, if I am out and about one day the next day I’m pretty much worthless. Ugh!

Joy at  least feels that someone understands

Thanks for letting me know how the fatigue affects you .. I know what you mean when you say you are looking at the TV but not really taking in what's on .I worry in case

people think I am lazy .... You are right when you say people don't understand ....but as you say this is our life .Like you I used to be very outgoing but that's not going to happen again now you take care Mary.

I wish spinach helped

Back to me:

I can't say I have better answers. I see a lot of research papers where they tell you that exercise will help. Just don't say that to everyone with RA. It's not a 'one size fits all' equation. Many do their best to exercise. It's tough when the result of exercise is often increased fatigue for days after.

One point to remember is that as you age you lose muscle mass, so at the very least try to develop your muscles by doing as much as you can. 

Here is a recent paper advising cognitive behavioural therapy.

Honestly this is the one that makes the most sense to me: Physical Function Continues To Improve When Clinical Remission is Sustained in RA Patients

Yay remission!


Link to RA Blog Week Day 2 for the rest of the blogs

RA Circus - #ChronicLife

In reading a blog yesterday someone was laughing out loud about the Elephant on the Trampoline as an antidote to gloom. Humor is a great way to get temporary relief from almost everything undesirable.

The elephant made me think of the circus of course and those vintage posters I love to look at.  It also makes me think  of this successful strategy that got me through years of gloom after my diagnosis with more optimism and some unexpected bright spots that helped me through some tough years.

I would also say that (insert your disease here) is the "elephant in the room' for many of us. It takes up so much space in our lives that we would rather use another way. 

Getting a diagnosis of inflammatory arthritis is a bit like being shot from a cannon - it's scary and a huge shock coming out of the 

cannon and you can't be sure how the landing will go for you.  The diagnosis may be only the beginning of a different and more difficult phase of your life. Hopefully you will be one of the people who can achieve remission fairly fast.  To do this you need to see a rheumatologist soon after your symptoms appear and ideally you will respond well to medication. This now happens far more frequently than when I was diagnosed decades ago.

People talking about your illness may say "Look at that brave girl and her amazing exploits dealing with a serious illness" (at the best) but it's a lot like trying to tame a wild beast and you never know when it will turn on you.  It's important to keep practicing the measures that keep it under control for you. You can't turn your back on an opponent like this. 

Keep your eyes on the tigers.

As Dr Keystone said in  a lecture a few years ago "RA is a medical emergency" That statement is a call to action. (I will comment that  the lecture was inspiring)

One thing we all do with RA is juggle.  Medical appointments, doctors, family, fatigue, pain, work and worry about the future. That's a serious amount of stress to deal with.  I would like to cultivate a teflon personality so that none of the stress  would stick to me. The flip side would be the velcro personality which sounds like bad idea.

In this article about the brain though there is a statement that the brain is velcro for negative experiences - they stick and good memories are easily forgotten, so we need to work harder to overcome the negative and make more good memories. Some ways to do this are through positive emotions and cultivating the "relaxation response", which includes humor as Kelly Young aka RAWarrior says,.   Auntie Stress has a good post about kindness as another way to lower stress. 

Since this is a circus it's no surprise to see the next act involve great skill and agility. RA is a balancing act and with the feet I have now that is literally true.  I walk very carefully and try to do balance exercise.

With any chronic illness you need to enjoy yourself at least some of the time.  I once had a talk with a social worker from The Arthritis Society and an important piece of advice she gave me was "Have more fun".  Working, housework, social obligations all go better with fun.  My friend finds Doris Day movies enjoyable and she's a Dallas Cowboys fan too.

Over the years so many people in the know, like physios and moderators in Arthritis Self Management courses have suggested that exercise in a warm pool would benefit me.  I believe it but the energy expenditure equation keeps me from doing it.  By energy equation I mean this. The time to put on my bathing suit, dress, drive to the pool, park, undress and shower and then to do all that over again in reverse just does not seem to be worth the effort for only 1/2 hour of exercise.  Maybe if it were this much fun I would do it.

Water Circus

Madame Yucca looks like an amazing woman. I'll never be that strong but I do try to maintain strength by just doing simple isometric (muscle tightening exercise) and I have been doing Arthro-Pilates for years now with Lori Weisbrod (Toronto).  I love exercise that you can do lying down.

The topic of today's blog carnival is how to keep disease from taking over more of your life.  I can see that as a necessity but at this point for me the RA is well integrated and I no longer think of life without it because it is the house guest you can't get rid of.  

Once you have damaged joints, even if the other symptoms are controlled, the mechanical effects of the damage will continue.

When I was working my job was so interesting that I was not thinking much about pain for large periods of time. I used work to keep the RA from taking over even though I had to adapt.  Now that I have retired I find blogging is an enjoyable occupation. Creative outlets are good for the soul, no matter what you produce, from books to baby clothes to beautiful pictures. I totally forgot the RA when I was looking for these circus posters.

This blog post is part of a carnival. Please visit all the posts in the carnival. Here's the topic and a link.

How Do You Keep the Disease from Taking Over?