Monday, 21 September 2015

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

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