Yeah another gripe about the wonders of this ever so mysterious RA. I'm tired, literally, I have never been so tired in my life and for no apparent reason. I have been bed and couch ridden for a few days with no actual complaint, just very tired, weak. It is so hard to get others to understand probably because I don't understand. I have not ran a marathon or anything just woke up like this and then went back to bed. And then suddenly I am fine, awake, alert. Slow and sore but ready to clean and work and get things done. My son returned from Iraq last week, Oh happy day!!!!! I have been waiting for this, so excited. Yea well I could barely walk around the whole time he was here. No fun what so ever. I slept alot and sat on the couch alot. It's not fair, RA ruins everything. It absolutely ruins everything some how some way. The couple of weeks before he got back I was taking walks at the park, cleaning the spare room for his arrival, helped my hubby in the yard, feeling really awesome and healthy. Sorry, but I needed to gripe. It just makes me mad that my body would do that to me at such an important time. I think maybe RA reacts to adrenaline or whatever your body does when it is excited or anticipating something really awesome. It sure knows how to mess up a good time. Thanks for letting me gripe.
RA just makes me crazy
Hi Nan,
I can sympathize - the approaching winter seems to put me on the couch a lot. I think of things I could do, but prefer to save my energy for the time being (or "spoons" as Lene puts it). I do feel lazy, and I know some exercise would help, but it's hard to get going. (the darn exercise bike is right by the couch so I can ride while watching TV - once I get on it, I usually feel better - But I don't think of it until I'm about to head for bed : "Oh, another day without exercise!") I think about baking pumpkin muffins - but then I have to clean up. Right now my priority is to be able to keep doing my job (full-time, still) so I can keep my insurance, etc etc.
I took a quick look at your profile, and I've never heard of Limbrel - I just looked it up and it's for osteoarthritis management. (Yes, I know a lot of us have both osteo and rheumatoid arthrits). I agree with Lene that if you are having problems longterm you may want to consider a change. I'm on Enbrel, for the last 4+ years and it's helped a lot. Yes, there are risks - and there are risks of not being aggressively treated as well. Or there may be some other reason why maybe you are not a candidate.
I think fatigue in RA is "highly underestimated" by those who haven't been through it. It's a fatigue that literally goes right down to the bone marrow, in my opinion - and perhaps literally, because so many of us also are anemic - I was borderline even before I got diagnosed (found out I was borderline anemic as a teen - the rest of my family was much more athletic) and now it's worse. That apparently is part of the territory.
At the same time - maybe you need to give yourself permission to rest? Sometimes that is the best thing to do! If you MUST rest, then - don't beat yourself up about it! 
I'm finding that, when I take the time, journaling helps me deal with my emotions, whatever they happen to be. Do you have some kind of outlet that helps you reflect and "process" how you're feeling? (I know that's an overused word, not sure of a better one at the moment) - I'm reading a book at the moment by Sue Monk Kidd titled "When the Heart Waits" - it's kind of about midlife and beyond. I don't know your age and stage of life, but if you have a son in the military ... I'm in my late 50s and trying to take the good with the bad, although some days/weeks, it's pretty bad... but my dad late in life said: "When things are good - remind yourself, "This too will pass" - and when things aren't so good - remind yourself "This too will pass". I hope I'm not being insensitive to suggest these things. No one of us knows exactly how someone else is feeling, or what is best, but this is what is coming to mind as I sit here writing to you ... I wish you the best, and that things improve and get better....for you!
Thanks to both of you for your advise and comments, they are taken well. I actually take methotrexate, folic acid and plaquenil, the limbrel is a vitamin supplement that my doc added. It is usually given for osteoarthritis but he thought it a good supplement. Its full of flavonoids and stuff. I may have overdone it, I forgot the spoon thing. I am careful, though, I do get the guilty feeling sometimes that I don't do enough around the house, plus my husband was injured. He pulled a groin muscle doing a physical agility thing for the police dept he works for so I may have not realized I had gone overboard. I do, however, feel much better today. I saw my family doc yesterday and she said the same "spoon" thing. I was such an active person a couple of years ago I've even been called hyper-active by alot of people and it is hard to stop when you feel good I guess. I work full time as an accts payable clerk have 5 children one grandchild. Only one teenager still at home the rest are grown. I babysit the grandchild a couple of nights a week so my daughter can work. Thanks again, Nan
Sounds like a very full life! It's great that you are able to handle all of that - and so, don't be surprised if you do need to rest up now and then. I'm glad you're feeling better (I am too - it's been 2 difficult weeks, physically...) and also remember to pat yourself on the back for EVERYTHING that you are able to accomplish. Sometimes we don't realize how much we do, until we collapse, and then we're so discouraged not to be able to continue, that we forget to 'appreciate ourselves.' It's not selfish - it's (in my view) appreciating what we've been given. you know the old standby, 'love your neighbor as yourself'? Well, it's not 'love your neighbor (or your family, or your volunteer committee') MORE than yourself, it means treat others AND YOURSELF well! Congratulate yourself on everything you are able to do, just as you would congratulate and encourage a friend who has a chronic illness, on what she/he is able, willing, and determined to get done.
I learned a long time ago, before RA, but not before a lot of frustration (I'm an office professional as well, but had trained as a musician/music teacher - not able to handle the energy demands of the job, however) made me feel like I was doing nothing. So, I had to turn around my perspective and just accept what I could do - my husband would remind me that all or most of the professors I work with, are not also dealing with having family responsibilities. That's not as true as it was then - but I've also realized that I would not have wanted to be any more divided between work & home than I already was. Then I got involved in a lot of volunteer work - which I've had to cut back in recent years since the RA. The stress & pressure, or just the time, is not always negotiable, I can't count on how I'm going to feel on a given day/night/weekend. So I make less plans, and prioritize. I could go on and on but you probably already know what I'm talking about! Anyway, have a good day 
And you wonder why you're sometimes tired....
figuring out how to balance thing your life and your RA can be a very challenging process. You want to keep enough of your life there so you still feel like yourself, yet learn to say no (I'm still working on that myself). I had one additional thought - you may want to try to keep a diary of symptoms, activities, foods, your medication schedule, etc. for about 3-4 weeks. It can help you identify patterns of pain, when you're tired, what makes you tired, etc. and can in the long run help you switch things around a little. Keep an eye on your methotrexate schedule - meth can really knock you for a loop and if you find that the pattern in your diary reflects that, you can try decreasing your activity level around your medication days to give you the rest you need.
It is difficult to feel good for a day or two and then the bubble bursts and you're back to laying in bed hurting too bad to even get up to eat. I've been coming home from work; fixing dinner before the pain gets too bad; cleaning up the dishes and crawling up the stairs to bed.
Sometimes I feel so bad because I have to ask my granddaughter to run downstairs to get a glass of water for me or to hand me my medicine because I left my purse downstairs. I just want to crawl in a hole sometimes. I feel totally helpless. When I'm at work, all I can think about is how I can't wait to go home and take my meds and go to bed.
I know it's not true but at times, I feel like a totally useless human being. I used to garden and walk and do all those fun things. Now, I can't do any of those things. Gardening was my thing. Now laying in bed has replaced it. What a drag!
I knwo just how you feel! I'm 57 and have fought this feeling for 4 years.My rheumatologist gave me shot of cortisone and prednisone prescription yesterday. Amazingly I can feel somewhat of a difference. i also have Sjogren's and Celiac's so I can tell the effects of the stress is more pronounced. My son came home from TX to sc the weekend after my mom fell and broker her hip. Like you, I should have been dancing on the ceiling as I'd not seen him in 16 months!!! Instead, within 1 hour after he got to the hosue, I was in the bed. Every night, same thing. I have to be laying down before 9 and stay in bed until 8 - fortunately am retired. I stopped teaching not knowing what was wrong. RA makes you look ok on the outside but hurt so on inside.
It took me 5 docotrs to get the diagnosis right. Good luck on feeling better soon.
Thanks to your son for his service in Iraq - it will be a wonderful thanksgiving for your family regardless of how you feel, correct?
I'll be 27 in a couple of weeks and I've been living with RA since I was 18. I've been on Embrel then transfered to Humira, all while taking methotrexate injections. I've had many cortisone shots and radio frequency procedures. They don't seem to help on most days. Just yesterday I couldn't get out of bed to take my two young children to school and I felt terrible. I stayed in bed most of the day. I made it out of bed today with much difficulty while sharp, throbbing pains were shooting everywhere in my body. I can't get up off the couch or out of bed a lot during the winter months, and here in South Dakota the winter months are long and cold. I call my doctors and I can't seem to get any answers for this pain that runs my life. I also have a RA factor that shows up negative. I've tried Plaquenil and it turned out I was allergic to it. I'm at a loss and all I do most of the time is cry when I'm in so much pain. Do you have any advice or suggestions for me?
Good luck to you and happy holidays!
Dear Nan,
I too have Rheumatoid Arthritis and find that it interfers with EVERYTHING in my life. On those days that I feel slightly better than usual, I try to help out my husband around the house and just end up hurting myself again. Feel free to gripe. I know what it's like to feel that no one understands what you're going through, I too feel that way sometimes. I'm allergic to aspirin and anti-inflammatory medications so I have to rely on Prednisone which causes me to gain weight - another lovely side-effect. Still, I shouldn't complain - where would I be without Prednisone. I also find it nice that there's someone else out there who is in pain and I don't feel so alone with my suffering. It is only through the support of my husband, my husbands family, and my family, that I manage to enjoy life at all. Take care and I hope that one day you will live pain free - it's what I wish to us all.
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First of all, congratulations on your son coming home? That is wonderful.
Second, RA is unpredictable and can take you from doing really well one day to having a really slow day the next. I have a couple of suggestions, though.
Is your disease well-managed? I.e., you're no longer experience swollen joints, morning stiffness, etc. If not, you need to speak to your rheumatologists about possibly increasing the dose of medication, as your fatigue may be related to your RA flaring. If your disease is suppressed well, the fatigue could be related to when you take your medication. I have a vague memory of you being on Enbrel, is that right? If so, it's quite common to feel tired for a day or two after the dose.
And lastly, based on your description of your activities, it sounds to me as if you're not managing your spoons well (see my recent post on spoon theory). Living well with a chronic illness like RA means being very conscious of what you do. It also means that you should do less than you're capable of each day because if you use up all your energy several days in a row, you can expect to crash and require a lot of sleep and sitting on the couch to get charged up again. It can be very tempting to overdo when we are feeling well - I'm currently nursing a shoulder injury acquired doing just that - and when you never know if you're going to be in pain the next day, it's tempting to finish everything while you're feeling good because and at least it's off your list. The problem with that approach is that it virtually guarantees that you will be out cold the next day (or week). Smart pain management means being very conscious of your energy reserves and doing less than you think you can. I know it sounds like it's going to slow you down, but in the long run, if you do it in less every day, leaving enough energy to do more the next day, you will get more done in the long run than if you use the "feast or famine" approach.
Lene,
Your spoon theory really hit home with me. I never thought of it that way. Thank you so much for a point well taken!