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How much weakness and fatigue is normal with RA?

I get VERY fatigued very easily. I walk across the lawn, and feel like I've been running a marathon, I'm so exhausted, I have to sit down. I brush my kid's hair and have to rest every 2 or 3 times I raise my arm to brush. My arm burns like I've been lifting weights! It's just plain silly.

This has gone on for almost the whole time since before I was diagnosed - the weakness and fatigue with very minor exertion. If I have to carry a bag of groceries, I'm wiped out for the rest of the day. Most of the time, I'm moving around on what seems to be sheer willpower. (I still mow the lawn, clean house, etc - but it feels like it's going to kill me one of these times) I just wonder whether anyone else has this.. and if they have anything that helps!!!!

  1. Thank you so much for reaching out. I have experienced exhaustion like you have described.I'm sure you are already doing this but let your Rheumatologist know your symptoms.
    Also, just a suggestion but it might be helpful to discuss with your doctor the medication you are taking for your RA. Sometimes medications we take stop working in our body. It just happens. Again this level of fatigue is not abnormal for me, however it is my body's way of telling me something isn't right. I believe your body is telling you something too. I know it is hard but listen to what it is saying. It has taken me many years to actually stop and listen to what my body is saying.
    Also have you had you Vitamin levels checked of recent? Specifically Vitamin D and Vitamin B12 and B6. You would be surprised what havoc vitamin deficiency can play in your life. I have included a link to a series I wrote on this topic.
    Hope you find the articles helpful.

    Please keep us posted. Take Care of yourself. I truly do care and hope to hear an update on how you are doing. Just Keep Swimming...Lynn Marie, " Team Member"

    1. Thanks so much! I have told my Dr, he keeps trying new meds. Next to start with is xeljanz, once the rx gets filled. (mail order pharm) My d levels were low at one point so I take supplements now. I haven't had b levels checked in a while, but I felt the same while I was supplementing with B complex as well. I take whole-food vitamins with extra of a bunch of different ones, and eat only healthy foods, no processed stuff, and I might eat out once every few months - everything I eat is raw veggies or food I cook myself from whole ingredients. No sugar or wheat or corn.
      Since this ride started a few years ago, I've only have a brief moment of true relief - several weeks on Enbrel about a year ago - Then it stopped working and nothing's worked since. I worry that at some point they'll have tried everything, and I'll just be stuck like this forever, lol!
      I hope to get the xeljanz sometime this month, and will hopefully get some relief. 😀

      1. Hello RAH8R!
        So great to hear back from you. Wow! great job with your diet. Always good to supplement with Vitamin D. Vitamin B supplementation can be tricky. I have tried to orally supplement. However, myself and my entire family require B-12 shots. Something to do with our ability to absorb the B-12.
        I was on Xeljanz for 3 years and did well on it. It honestly was the only drug I felt relief from until now. I take Arava. Xeljanz was effecting my liver numbers. So that's why I ultimately had to come off. Then went on some other biologics that just didn't work for me. Wishing you success with Xeljanz.
        Also I was wondering what is your pain level at and how well would you say your body is able to sleep. I am only asking because like most people with RA, we live with chronic pain. I just kind of accommodated to the high high level of pain I was in. Because I was in pain I did not sleep well. Vicious cycle we get into. Hope to hear updates on how you are doing. Never give up! Researchers are continually coming up with new biologics to try. I was diagnosed over 16 years ago and the variety of drugs available have dramatically increased and will continue to do so. As always, we are here for you. Reach out anytime! Just Keep Swimming...Lynn Marie, " Team Member"

      2. Well, it depends. When it's 5 AM, and I've been lying there for an hour or two trying to get back to sleep, but hands and feet hurting too much, and I finally lever myself out of bed to try to distract myself so I can avoid the pain, I'd say it's pretty high. High enough that I can't ignore it. When I put my feet to the floor after having them up, pain level is pretty high then too. Enough for me to cry out in pain, because I always forget that it's going to hurt. If I mow and do yardwork, or clean house, or anything that requires exertion, I feel like I'm being crushed under heavy weights for the rest of the day. Other than that, I'd say I feel pretty good! In other words, when I'm sitting in my comfy chair, with my feet up, drinking my ice water, not doing anything or moving, I am pretty pain-free. I tried to explain to my Dr that if I'm immobile I'm pretty good but if I move around I'm in a lot of pain, but I don't think I did a good job, lol. I don't sleep well at all, trouble getting to sleep at night, I wake early from the pain. Pain & stiffness is worst in the AM but that's when my energy for the day is at the highest - so if I have energy in the AM, I use it. And then regret it for the rest of the day, lol.
        How is Avra doing for you? How long did it take for xeljanz to start helping you?
        I had to have a b12 shot once - not an experience I'd like to repeat as it was quite painful!!! They should make a patch, lol!!!
        Thank you for responding!!!

    2. Just was checking in to see how you are doing. Just Keep Swimming...Lynn Marie, " Team Member"

      1. Still swimming, lol. I think maybe I'm having a 'flare' except I kind of go from pretty crappy to OMG I HURT and then back to pretty crappy. Xeljanz finally approved so I should get it within the next week or so. And then, I can actually try the med.

    3. Every single day faitigue pain swelling is my lifepartner. It is simply something i must endure because I must work and live my life. I do everything you do plus everyday use multi pain patches usually at least 6 and compression wraps on top. In our community I could get bags of gold easier than pain meds. I carefully use arthritis strength OTC meds and dream of the afterC19 days when we can take steroids again. Biologics++made me seriously ill&ruined my health. RheumMD says try to hold out for at least another 10 years using compression gloves++to decrease joint damage on my fingers because of biologics side effects. Every night I soak my feet with warm water epsom salts melatonin which helps with pain&sleep. I also use patches with herbal vitamin combinations which help a little. They are expensive so they are special occasion only. Just keep moving all the time pacing myself. Just breathe.

      1. I guess I am curious which biologic medications you have used? I will admit that I had to cycle through a few to get the right one. But after 5 (over 13 years), I got one that works so well. I have been on this one for eight years with no decrease in action or increase in secondary symptoms.
        I hope you do not stop looking and trying to find answers. I would be concerned if the prescription is waiting ten years, and other options might be available. I know keeping open communication with my rheumatologist is paramount to be OK with where I am.
        I hope you will find that also. I wish you much good fortune. ...................... rick

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