OK Most of us know the spoon theory. IN fact, if you have the link address it would be good to post for Rob who is trying to learn about RA. Anyway, I have found that the worst symptom of my RA lately is stamina. I do anything, and I only have a couple productive hours a day. I need to nap and have very little energy left. If I push it, I get flu like symptoms, muscle aches. Now I am asking myself - what is going on here ? Is it RA, do I have a secondary condition, am I depressed, a hypochondriac or just lazy. I have never been this way my entire life. I return to work in one month and I am REALLY CONCERNED. I would love your feedback on how your RA has effected your energy level, how you work with RA, do I need more time on Enbrel. I would love to hear your thoughts on the subject. I feel so damn lazy
As far as feeling lazy goes, if you aren't normally that way (and it sounds like this is not you at all) then I would say it's the RA or possibly depression due to the RA...or something else. I've been feeling the same way lately. Sure I get my things done here at home, but I seem to have to really push myself do get things done. I know I haven't been feeling the best lately, but often wonder if I'm depressed as well. I do have an app't with my family doctor in a couple of weeks so I'll talk with him about that since I don't see the RA doc until April.
Don't be too hard on yourself for feeling lazy...just do the best you can and hopefully you start to feel a bit better soon.
Kelly
I GET THAT I WILL BE SITTING EATING DINNER AND SUDDENLY I AM SO TIRED I CAN NOT EVEN LIFT MY FORK I HAVE TO LIE DOWN IT IS TERRIBLE I WOULD AND SHOULD HAVE A NAP EVERY DAY BUT AM ALWAYS GOING TO PHYSIO OR THE DRS WHEN MY KID IS AT SCHOOL...........TERESA PS I HAVE RA AND FIBRO I SOMETIMES DO NOT KNOW WHICH IS CAUSING WHICH....TERESAI know this does not solve your problem or mine but...god...it is so good to know that I am not the only person who feels like the energy has just been sucked right out of me. I used to have so much energy, and now I too have only a few good hours a day and then I am just wiped out. I have had joint pain and weakness for years but just in the past year it has been dramatically worse. I am an ER nurse and I am used to working 12 hour shifts. Now, for the first time ever, I have been out from work for 3 weeks and I HAVE to go back. I can't afford to stay home. It is frustrating. I don't know what I am going to do, but I have to do something soon. I am sorry that I have to deal with this, I am sorry that all of you are dealing with it too; but I am happy that we don't have to go through it aloneSorry, not much help, just venting. Thanks for listening.
Pam
P.S. The address for spoons is www.butyoudontlooksick.com/spoons.htm
Pam
Roxy~Humira helped for me some with the exhastion....but I still struggle with it at times.
I really don't think you have been on Enbrel long enough straight without a break to get the full effects. If I was you I'd ask my doctor about another biologic or another option entirelly.
Many of us have had to stop our meds on occations for various infections....but I haven't heard of anyone else having to be off nearly as often as you. I don't think it agrees with you.
How many injections in a row have you been about to manage so far? How many months now has it been since you originally began?
Are you still taking MTX? I see in your list of meds you list it.....but I thought you weren't able to tolerate it. That will make you really tired as you describe for days. Depending on your body.Fatigue is an ongoing problem with RA for me. I have been on Enbrel and methotrexate for about a year now. It does take time to work. I took off work for 4 months because of exhaustion and the symptoms you describe. I am back at work now but I had to change my lifestyle to be functional at work. Through the week all I do it go to work and come home and rest. I also have an office job so it's not physically demanding. The fatigue will get better but unfortunately you will never have the energy level you had before RA. If you overdo it you will pay for it. Choose what you spend your time doing carefully. Don't over commit yourself.Welcome Jo.
I've had the same experience as you. I work a 40hour week....but do little else beside the occational load of laundry and simple meals through the week and dedicate the remainder of my time to rest. Some weeks are easier than others; granted....but I have to commit to getting the proper rest I need.
Once you've dedicated certain times of the day....or week just for rest; you don't feel as guilty. I know those feelings as well.
Thanks for all your feedback. Yesterday, I ran errands and did a couple chores around the house and I spent the rest of the day being a couch potatoe. YUK Today is beautiful out so we are going to try a short hike. I HAVE TO be able to hike on my job. I am really afraid of losing my job. I have always worked outdoors. I am hoping it is the extra weight and the fact that the longest I have been on Enbrel yet is six weeks.
Lovie, I am on 5 mg mtx weekly, supposed to go up to 7.5 after six weeks. I keep getting taken off because of infections just like the Enbrel I keep getting taken off of. I am so attached to how good I eventually feel on Enbrel that it is hard to consider changing biologics. I am carrying my antibacteria gel everywhere with me and using it often. The "sick season" is hopefully coming to an end soon and I can keep healthy. I have to spend the night in the hospital on Mar. 1 for a sleep apnea test. I dread that - germs germs germs. I am hoping to build up my stamina and Mar. 6 I am going to ask my boss and rd about returning to work half time. My boss has already told me that if I cannot hike down in the swimming holes - I cannot return to work
Pammy - The guilt is the worst. RA has really eaten away my self esteem. I am down to 2.5 mg pred. the last couple days. I am hoping if I can wean off pred, lose some weight, I will have more energy.
Thanks you guys for letting me know you have the same feelings. It makes a difference to be reminded you are not alone.
Before a person gets RA, they think that if they were to get sick they would get disability but its not that easy. For one, you cannot measure fatigue. Two, believe it or not, employment provides some type of normallcy to your life. Depression sets in when you have too much time on your hands. The job takes priority over all because without that, there would be no insurance for expensive meds such as enbrel.Jo, I want to be employed - but I want to do the job I went to school for and have done most of my life. I am a park ranger. One day at a time - I agree it is not good to not work - trust me - I miss it. I am off for a short hike. It is going to be in the seventies in Northern CA. The dogs will love it and hopefully I will have energy left over. Took my mtx last night but I feel ok today. I hope all of you have a great day and get some good weather coming your way. Really is good for the attitude.
FloridaJo, I'm in FL too. *waves*
My engery increase my my first sign that Humira was doing anything for me....it only got better with time. I'm not saying I'm super woman or anything....I still get tired very easily and wish I had more energy; but I've seen much worse....and appreciate my improvement.I hate the exhaustion!! I am lucky because my hubby and I own our business and I can usually name my hours (about 4 or 5 hours and most of the time just 3 days a week), but since about mid January I have had to work all day everyday and it is killing me. I come home and just want to veg out (I'll be so glad when things settle back down). So after all this rambling I guess I was trying to say, Roxy, take your time and don't push yourself, don't give up either just pace yourself and give the meds a chance to do their thing. Hugs and good vibes.Lovie,
I was just wondering how long you have been on Humira. I have been on it 3 months. After the first month, I started feeling pretty good - a lot more energy. But for the past 2 weeks, I feel like I have taken a step back. I literally konk out sitting at my desk by 2pm. I am hoping that I will get another surge of energy back as I continue to use the Humira, but I feel pretty discouraged at the moment. I just hope that it hasn't stopped working like the other drugs that I have tried in the past. Have you ever had some weeks when the Humira didn't seem to help followed by weeks when it did? I guess what I want to know is "Is it likely that the Humira will work again, or is likely that once it stops, that's it."? Also, what about headaches? I had better stop or this post will be too pitiful to read.
Pam
PS: I am also on mtx, plaquenil, celebrex, and folic acid.
Pam~
I've been on Humira for about 14 months now. After 6 I changed to weekly due to the fact that I wasn't getting 14days out of it. I'd maybe get 8 or 9 pretty good days. Weekly doses doubled the amount of medication I was getting and did make a difference for me.
I do think you're going to have good weeks and bad. I take both my MTX & Humira on Saturdays so often by Thursday and Friday I'm almost running on empty. Does that make sence? Some weeks are better than others.....just like some days are. Just because you are having a bad day; or even week doesn't have to mean things aren't working.....but it could.
I've also increased my MTX several times as things started to get worse and that will pull me through for a few months....but I always seem to go the same route. Things lose effect after a while. That's definately been my experience.
Welcome to AI if I've missed the opprotunity to welcome you before.
I have a question....What is the Spoon theory?Check it out:
http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.p hp
roxy I think I have the same problem. They diagnosed me at first with fibromyalgia, now this new dr tells me he thinks it all RA. I am to tired to run the sweeper, and heaven help me if there is a sink full of dishes, I live alone at the moment.So I get scared easy, especailly when it flares up, Its always inflammed, but not always real painful. [QUOTE=pammy416]
P.S. The address for spoons is www.butyoudontlooksick.com/spoons.htm
Pam
[/QUOTE]Hi Karen, You have been going through it
I have not flared in over a month. Just keep getting infections and taken off meds. Weather makes me sore, major exhaustion and headaches have been a problem. Right now, I really am doing better on Enbrel - IF I could only stay on it!
My biggest worry right now is my job. My rd has me off until June and that will be more than one year
Good to hear from you Karen. I am so sorry you have been going through so much. Hugs and Support
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