Hi all! I am 22 and I've had RA for a year. I must say- it hasn't disrupted my life too much until my last rheum visit a month ago. My inflammation markers were down but the arthritis has traveled to my hips, so my rheum wanted to up my mtx dose and also add another DMARD. I tried sulfasalazine but got so sick on it. After 10 days, I stopped it, but it feels like my body has been in such a dip since then. I am suffering from debilitating fatigue- I can sleep for 8 hours and then be awake for… read more
Bless your heart.. you’ve joined the EPIC FATIGUE team 🙄😏😞 It’s pretty normal my comrade.. but it’s not fun. It can go in cycles or it can come and stay for a few years, like mine did. Finally, after three years of struggling, I’m finally feeling a bit better! The epic fatigue is gone and now.. just the “normal” RA fatigue remains. I’ll gladly trade one for the other. I couldn’t get out of the house, at all, for almost three full years, it was terribly depressing and incredibly isolating. I had already been forced to give up my career and it seemed this disease was also requiring me to lose even more of the me I once knew.
My heart broke for you as you told your story because I totally felt the same way as you did. Sadly... it’s a very real side effect of RA... but it does pass, I promise.
I’m 9 years into this journey myself. Finally found a med that appears to be working! I get an infusion of Rituxin every six mo’s. I had tried every med known to treat RA (some twice) with NO forward progress until I tried the Rituxin.
You hang in there friend... Everybody with RA completely understands what your going thru.
Take EXTRA GOOD care of YOU! Epsom salt baths, infrared sauna and meditation have been very very helpful for me.
Fatigue is the worst part of RA and for some reason it appears to be the least addressed by the medical community. I actually retired early because I was doing such a miserable performance at my job. I was an over achiever at work and was so embarrassed by my performance decline.
If I can offer one thing which I read in one of the RA magazines; do not plan anything two days in a row. Work or shop (etc) one day, rest and have a peaceful day the next. This seems to help me.
Know and accept that the days of being a super performer are over. Once you get in your new reality you will enjoy life again.
Life after RA diagnosis can be rewarding.
Like most of the post that I have read, fatigue is real and debilitating! Really, if anyone has a sure fire solution let me know. I've had my iron level tested and take B vitamins everyday (along with other supplements), I try to exercise when I can, I'm eating better (I'm even beginning to lose a little weight), I don't have a lot of stress in my life (not now), and still to no avail do I ever have any energy. It makes no difference whether I sleep four hours or I sleep nine (which is rare), I still wake with no energy. Then like a lot of you, when you do get that "sudden burst of energy" you want to do everything that can because you don't know what tomorrow will bring. The only thing is I usually do too much, which in turn only makes me even more tired. Fortunately, I don't worry any more about being called lazy, been there, done that, and it doesn't help. I thought about getting a T-shirt made that says, "Yes, I'm Tired! Deal With It Because I Have To!"
I too have found the fatigue to be the worse part of the RA. It seems the only time I feel like myself again is when I am on the prednisone. I find that green tea and plenty of fruit and vitamins helps a little. I have learned to let things go and use my energy for the important things in life. I live alone with two dogs and foster small older or sick dogs and spend time with my grandchildren. If there is dust on the furniture so be it. I keep up with the basic cleaning and try very hard to enjoy the good things in life instead of dwelling on what else needs to be done.
Fatigue is the worst part of RA yet it seems to be the least focused on by the medical field. To the degree that one questions if it is all in your mind and you just have to find the determination to push past it. Well you can’t, so that’s the short answer. Remember RA is like your body constantly fighting an infection, do you feel energetic when fighting the flu? Nope.
Now for the encouragement, use the energy you have wisely. Enjoy some of the simple things. A little gardening, a short walk, watching the sunrise, knit or crochet, read a book. Housework is way down on my list, clean but not spotless is my norm. Job, use the benefits you have to the full extent needed. FMLA, state leave, bargained paid time, etc. These are available to you and meant to protect people with chronic conditions. When all else fails and you can’t keep going at your job, consider social security disability.
I don’t want to scare people, but you’re not going to get better. So learn to live differently and enjoy the life you have.
To hell with what others think.