Hi All, I'm Whispered, I've had RA for almost 2 yrs, this summer. I'm on disability already.
I'm very frustrated w/ it!!.. The exhaustion is just killer, I'm a nightowl, today i got up at 10, back to bed at 4, for a nap
(usually 2 hrs).. and i ended up sleeping SIX and half hrs.. I'm asleep more than awake.
Exercising, even mild stretching makes it all worse. I can barely walk to the mailbox , every 2 days.. and I guess I'm joining here, so I don't feel soo alone and have other people , who Understand and get what I'm going thru.
I've been on Mx and predinose, for over a yr and am now trying Humira.. shots eek.. I've only given myself 2 (well the first one, wasn't very successful!! lol).. and still feel like I have the flu all the time.
I just wonder if I'm ever going to be ever to really be able to have a social life.. or WALK for pleasure again.
I'm usually pretty optomistic person, lol~
This is has got to be one of the most frustrating diseases.. i'm also bipolar, so that adds to the exhaustion.
Are other people just as tired?? When I hit the wall, thats it!
I've told friends, that even if brad pitt were to show up, I wouldn't be able to answer the door or care, bc I HaD to sleep!!
I've learned to plan things, if I go out for one day, for even 3 hrs, i know i'm going to be dead the next couple days.
I have a worker, paid by the state, so I'm really fortunate that way!
The achyness, pain and noo, I don't overdo it.. I refuse, I don't see the pt in it and it just doesn't seem to go away!
STuff to know about me, umm great sense of humor, offkey, freespirit, love to travel, love the color purple..like to design, decorate and love to talk and make new friends online. I'm also looking for Yahoo Im buddies. :).. I don't always vent!
So do others feel achy, in pain a lot, sleep forever?? or is that a duh ?, lol.. I just dont' want to feel alone! Hi there The fatigue is by far the worse thing about RA.I am like you I seem to sleep more than i'm awake.The humira might make you feel a bit tired too, it did to me when i first took it but its seems to have settled down. I too found that the internet was a good source of socialising as i wasnt able to get up and walk around without wanting to collapse with exhaustion.Everyone on here will be able to give you hints and advice. Be kind to yourself its not your fault you feel like this its this damn dreaded disease
I have the same problem and I haven't found any answers yet. I just wish I could sleep more at night and less "in shifts" so I wouldn't be falling asleep in the Doctors office..
Glad you are here! Hi Whispered, and welcome. Tiredness and sleepiness yes indeed. I have trouble sleeping at night, but strangely enough, if I nod off during the afternoon (which I usually do while having a read) I seem to not have so much trouble at night. Now I call them my little between task "power naps" - probably only about 1/2-1 hr - and instead of feeling that I am a lazy lump, I do find that energising. A few months ago I was absolutely exhausted all the time, but I was working full time then. By the time I got home all I wanted to do was fall into bed. Things have been better that way since I stopped working - now I don't have to get up to an alarm and race off to work. I still get up at about the same time, but just ease into the day, and have learned to pace things. Good luck, and I am sure you will nake lots of new friends on here. It is a great little community.
Hi Whispered, I take mtx, prednisone and enbrel. The enbrel alone seems to be a pick me up. I used to think that they added some speed to the med. Another pick me up is to pick me up. If i just lay around, i will sleep my life away. If i get up and get going, and i don't mean housework, i feel more energized. I also drink a monster energy drink in the morning and sometimes one in the afternoon. I do believe that sleeping becomes a habit or at least a pattern of lifestyle and with the pain and fatigue it is easy to pattern. Just try to get up and do stuff. This is just my suggestion, not a medically approved answer. LEV Welcome Whispered! Yes, the fatique can be pretty bad, but I've noticed with me it seems to come and go. I don't have an outside job right now so I'm able to sleep in which helps me quite a bit. The last few weeks I've seemed to have more energy than usual so I've taken on more projects which have made me feel really good about myself! I over did it this weekend with painting my kitchen and I'm paying for it now, but I'll be back at it tomorrow. I've found that for me, if I sit around too much, it makes it much harder to get up and do anything. Sometimes I just need a little push ,like putting my running shoes on. It's enough to get me in gear. I'm determined to keep using everything I've got until it falls off.
Fatigue is really hard to manage and as you see, different people have found different answers. I really like Lev's idea of the monster energy drinks. That sounds like something I need. I know that RA does seem to fluctuate in the extent of its symptoms. I've had mild years and very severe years. I'm in a severe one right now. So my focus is on finding answers to all the problems that I have. My health and improving it are the priority. When I've had problems in the past, they found things that they could tweak and they really improved. I am looking for that right now. I do have a lot of confidence that if I keep trying, searching, I will find answers that work for me. One thing that helps me is to change positions a lot during the day. It is very hard for me to walk at time. But I move to the chair, to the couch, to the wheelchair, get out the walker. I just have to keep my body moving. Even at night, I find that I often have to get up and do stretches for my legs. RA tends to solidify your muscles. You can get the stretching to work, but you have to start out small. Ideally, you should try water therapy first. From the sounds of where you are right now, that is what you need. Water therapy is much gentler and helps you build up your muscles gently. It also feels wonderful to be weightless. Just that is enough to try it. Then they can progress up to gentle floor exercises. As they do this, your energy will improve maybe not as much as you'd like, but more than you have right now. Also, check to see if you have Fibromylagia. It often accompanies RA and requires additional treatment. It's easy enough for them to test for it. You might also want to ask for a sleep study. If you have unknown sleep problems this makes the fatigue even worse. Welcome aboard and I hope you are doing better soon. Welcome Whispered! It is possible that the Humira will help you with the fatigue some more when you get more doses into you. The Enbrel has helped a lot with my fatigue but not all of the time, as the others said it is a part of this disease. Take care and I hope the Humira helps more. Welcome Whispered I too am relatively new to RA and this website. You will get a lot of support and information here. Everyone has been very friendly! I also have difficulty with the fatigue. I work 80% of my full time position and find some days dreadfully long... I take MTX and Plaquenil and don't find either of them to be much of an energy booster
Gus I have fatigue most all of the time due to RA also. I often have trouble staying awake and fully alert at work. I work full time and when I go home for lunch I usually use this lunch break to take a "power nap" for 45 minutes and it helps deal with the fatigue. fatigue here too. Sometimes worse than others. I slept all day Friday. I just seemed to get up,do something, have nap, wake up, do something, have a nap...... I only work part time but that is enough to wipe me out. I work 3 days and have 4 off in a row and I really need that time to myself to regroup. Welcome to the the board. Welcome Whisperer! Try to fight the fatigue by doing things you like to do. Make a plan to do some activity you like every day. The kind of fatigur you are describing has to be shaken off - you can't sleep it off, seems to just make it worse. Thanks guys, for the nice welcome and knowing, I'm not alone. Theres no way I could work , so kudos to those that can...trying to do a bit more,,.. honestly makes it worse, even the tiniest extra step, just adds to the pain.. i am thinking maybe, i can try and do 10 mins of Yoga , a day..or eat better.. I'm just going to do lots of reading, and catch up on the board.. it moves fast!!! lol Blessings~
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