I manage to get through the work week but never get quite enough sleep. Then once the weekend is here...I find myself sleeping sometimes close to 10 hours through Friday night and having yet another nap Saturday morning. When i say nap, it's at least 2 hours.
Sundays are usually a little better. I feel a little less tired but I do very little of weekends. I tell myself it's justified since all my meds cause drowsiness. I know my friends can't begin to understand. I tend to stay in a lot. If I do have energy to go out shopping with my friend then I am spent the rest of the weekend.
I feel bad because I feel like I'm being lazy. How is it that I can fight off fatigue all week but when the weekend comes I am spent ?
I know part of it is that I am very focused, if I have something important to do...I get it done. Plus i think work is a distraction from PsA...even if I do have pain while I'm at work.
After another time on prednisone, my PsA is very active. Redness, swelling...much of it in my tendons. As usual the tendons seem to be the main focus and of course, permanent damage.
I have streaks of pain that show up occasionally in my wrists and one finger which gets really sore has involuntary twitches. Which really hurt and is really weird. Then there is the tingling or numbing feeling in some areas. Another weird thing.
I know too well what you are talking about. I had to finally quit my job. Between the fatigue.. Pain..swelling sleep deprivation and side effects of medication.. It was too much. I had to decide my quality of life I wanted to have..
I'm at peace with it now. I did not realize what I was doing to my body. The sleep deprivation and side effects of meds caused memory problem and I would fall asleep while driving.. That was my final wake up call...
Think long and hard on your decision. You will know when it is time
As Karen says, it’s about quality of life, and you know when it’s time. Fatigue is a difficult thing to gauge, because you often can find so-called reasons for it – working hard, medications that make you drowsy, the pain, etc. But, whatever the cause, fatigue seriously impacts the quality of your life. It sounds to me like it’s time for you to get out the big guns. Good luck with this, Dini. If you are lucky, you’ll be like me: the first positive effects I got from Enbrel was a lifting of my depression and a dramatic improvement in my fatigue.
Part of it is plain ol' circadian rhthym/ppsychology. The other part is trough levels of medications. Keys are when you take your big meds and when you do your heavier exercise. I'm referring to exercise wher you get the endorphin rush. Pain is one thing but redness/swelling is another. Your treatment team needs to make some adjustments. I'd start with my PT/rehab. That will make a huge difference in your tendons. You have got to push the med end. Predi simply will not help your energy levels. Even a low dose will effect natural production. There is no way synthetic works as well. I know it makes no sense, but schedule your weekends as you do your weeks. A variety of activities some physical some less so with expectations will help.
Have a sit down with a good pharmacist to schedule your meds so that you avoid overlapping trough levels. Incude your NSAID in the discussion. While the once or twice a days convienent, they dont necessarily help active folks as the trough usually comes at the time we need it least.
As strange as it may soind, don't sleep in on the weekends. It confuses your body and the older you get the more you realize it keeps you tired all weekend.
Dini - in your post you mentioned how you stay “in” most of the time. And your friends dont understand. That resonated with me so very much. I do my best not to complain to my friends so much so I think they maybe forget I have this condition. So often I hear “where are you”…“you never come out with us” …something to suggest I never leave the house. That gets so frustrating! With 3 kids’ a full time job and PsA…yeah…I dont want to do anything else Anyway, it somehow helps knowing we aren’t alone…love this site
Yes tntlamb...sleeping too much does make me more tired. It's ok if I keep it short..say 20 minutes but anything longer then I'll never really wake up. Sleeping in usually isn't an issue...it's those darn naps that get me lol
I had an ultra sound today, the rheumy at the PsA clinic did both of my hands complete. She asked me to let her know if it hurt but it actually felt really good. Like a massage. My hands were really, really aching today and they felt better after the ultra sound. I'm going to see about getting light massages for my hands to relieve some the the pain.
The doc that did the ultra sound said there in inflammation in all my tendons in my hands. No wonder.
It's time to move on and get some relief. Thanks for all your input and understanding. I not ready to leave work and I will fight having to do that every step of the way. I finally have found a job I love and great people to work with and I won't give it up easily.
Dini, I really feel for you. I must admit I have friday nights where I have to sleep for twelve hours to try to catch up - and like you, most of the time I can make it through the week (not this week - I worked from home today so I could get a nap - I'm very lucky to be able to do that on occasion).
But once I get that extra sleep, I can still do a lot and enjoy my weekends (thanks to my PsA being pretty well controlled).
I'm really pleased to hear you have a job you love - that motivation accounts for an awful lot! With that level of swelling and redness though, Lamb is right, it's time to look at the meds, so good luck at your upcoming Rheumy's appt.
I'm new here and still reading through the various threads. I can really identify with the weekend crash you have. I feel the same way and it makes me feel so guilty because the weekends are the best time for me to catch up on some of my more complicated financial tasks at the office. It's quiet then and I don't have to deal with distractions. Yet... when I read your story it made me feel really sad because you SHOULD be able to crash on the weekend and feel OK with it. Even without this illness life is stressful. My husband is not sick at all and he sleeps like a cat on the weekends while I feel guilty if I don't clear something major off of my desk and knock several handyman tasks off of my list at home. I think that being sick is our body saying 'HELLO' pay attention to ME. I have had arthritis and pain for decades but getting diagnosed with this condition has really made me think about how I utterly fail to take care of myself. I would not treat anyone else in my life with as little care and concern as my very own self. I think maybe you are the same. I sense that you really need permission to take care of yourself no matter what. Even if your friends don't understand, or your boss or whomever. There are things we all must do to be as healthy as possible with this and it just doesn't matter what anyone else thinks.
Wouldn't it be lovely if someone just picked us up and said 'I'm going to take care of you'? This is the task here. We need to do this for ourselves. We need to take care of ourselves like we would our child or our spouse or our parent. We don't really do that do we?
So... you are NOT lazy. You are sick. You can take care of yourself and get attention for the symptoms that are causing you distress. You are worth it. I hope you feel better soon.
The fatigue is hard to deal with at times. I usually take a nap everyday on my lunch break at least 30 min just to get through the rest of my day. I have 3 kids that are very busy so maybe that's part of why i'm so tired. I'm usually in bed by 9. although I don't sleep well at night. I wake up several times during the night. Sometimes it's the pain that keeps me awake. Im on humira and mtx. just started back on predisone the other day so maybe things will get better. I'm just tired of being tired.
Oh gosh, I know so well what you say, it is my chief complaint. I have a massive dinner tomorrow that I need to start preparing and here I am, almost at 11, just typing because I am pooped. In fact, I should be proud of myself, I got up at 9 instead of 12! I totally lose my weekends crashing and burning and I feel like a lump :( So many things to do and I just can't :( . I get up during the week at 5:00 am and I drive 45 minutes to work, where I stay until 4 or 5 and back home then :( I am an interpreter in a hospital what implies walking miles within the hospital daily (I have a step counter, some days is 4 miles) and also a huge mental effort, medical interpretation drains your brain. I live on beautiful Padre Island. On weekends, I want to go to the beach, surf, go bird watching, ride bicycles. But all what I can do is sleep until noon, hang around for 2 hours waiting for the pain killers to kick, go grocery shopping and then come back home exhausted and crash on the couch. I do not sleep well because I have pain and charley horses. A lump :( :(
You sound very much how I felt when I was extremely fatigued. I also experienced numbness and tingling and discovered I was extremely deficient in B12 and vit d. I have malabsorption along with the inflammatory arthritis .please have an evaluation and perhaps consult a neurologist for peripheral neuropathy.
Getting on a biologic (Enbrel), injected MTX, Celebrex, voltaren gel for enthesitis in heels and toes has made a world of difference. You must get the inflammation under better control. Best wishes.
Anyway, it somehow helps knowing we aren’t alone…love this site