Out of all the symptoms that you experience routinely, what is the worst one? What is the one that you have most often?
I ask this b/c I have had severe pain, I have had swelling, I have had days and weeks when I couldnt walk. But the symptom that seems to linger 99.9% of the time is the fatigue. I think that the better feelings the last 3 days are due to the increased folic acid dose, but I still feel like it is hovering around me. I was talking (or stating my case) to my husband last night and as I said it to him, it was like I was realizing it for the first time myself: "For at least the last 3 or 4 years, maybe more, I have constantly been tired and/or in pain. It has been so long, that I dont remember what normal feels like anymore." So my other question is, is this my normal now? I feel like a part of me is imprisioned, is this a life sentence? I already know the answer to that. Maybe, maybe not...probably.
I just am so tired of being tired. It is so hard to have a symptom that cant be measured or seen. I just wondered if any of you feel that the fatigue is such a difficult thing to fight.
Crunchy,
I absolutely feel like you do. Fatigue and pain are constant. Then, I will get a couple of days of good and it fools me. What seems most frustrating to me is all the sites that I have visited and all that I have read about RA makes it sound like you just take medicines and you normalize out eventually.
After reading all the comments in this forum that hardly seems to be case and it is not my experience at all. My daughter and three of my friends have Fibromylagia as well as me. Fatigue is just overwhelming for all of them. One just got disability. Hers is the worse. She is a brillant woman that I have known since 5th grade and now she has trouble concentrating as well as the fatigue.
If I had to choose between the two, fatigue would be the worst. With just pain, I can distract myself with other activities. But fatigue makes you stop completely and seems to bring on depression.
I've learned to let my body just go ahead and crash completely. Then, it seems like I can get my energy back for a couple more days.
I don't know if this is a life sentence. I think of it more of a strategic battle. I collect things that help and stop things that don't. I know that the doctor wants me to work from home and less hours. But I have to work at least 30 hours a week or lose my insurance. I'm sure others have the same problem.
I am making changes in my life to minimize my expenses and responsibilities so that eventually I maybe able to work from home. I think that might be what helps me the most.
I did start writing on a regular basis. This gives me great satisfaction. Working out helps a lot with fatigue, but you really have to build up to it a slow rate. I find this very hard to stick with and do work all day. But it definitely helped my energy when I was doing it 3 times a week.
I don't believe it will always be this way.
I have a saying, "We move through this life by our spirit, not our body. Our spirit can take us anywhere."
You know, I felt so good for two weeks, and this weekend I was wiped out. I napped twice today and have just felt TIRED. I don't feel like myself and I just don't know what is happening.Morning fatigue and loss of desire to GTF up. I'm not necessarily sleepy, I just can find the energy to get up. My hands are tingly, knees and elbows are numbish and my neck is so sore. This is the worst part of my day!!! If I can get my butt to work, I'll live til tomorrow.
DFWmike
Thanks for the response guys. I know that feeling of just not wanting to get up, but there are lots of days where I get up feeling pretty good and six hours later, I'm beat. I just dont know how I am going to keep doing 12 hour shifts. The eights are just as bad and I have to go 5 days a week then. If I do 12s, I can work 3 days per week. I wish I could work from home, but that would require a career change. I really wanted to try the Provigil but I am going to try getting back on Ritilin and see if that at least helps the memory loss and concentration issues. Last night, my husband and I were in the middle of an arguement and I was trying to make a point. In the middle of a sentence I just lost my train of thought. I just sat there trying to figure out what the hell I was trying to say and why. I have had that happen before, but not during a fight. I forget things, I lose chunks out of my day sometimes. My mind is always going 90 miles an hour. I have already checked with my RD to make sure that I could take the Ritalin with my other meds...I just have to go through all of the formalities with my PMD to stard getting the RX. I have tried coffee, that is a temporary fix but it does get me past that afternoon lull.I can’t say what’s worst, the pain or the fatigue .I too have had days and weeks when I hurt so much that I couldn’t walk, when laying in bed hurts. The fatigue is bad in a different way ,it gets to my head and really plays games with me .sitting and watching the world go by and not being able to take part in it .as for normal ,what’s normal? Something I found is you must find something to do anything will do .help at this site ,help at another site ,help people on the phone ,do something or you’ll find yourself in a deep funk that you can’t get out of .
Before I had my knees replaced I would say that by far the worst symptom was the pain. Sort of 8/10 every day. That was 4 years ago. When I look back over the last few years, even with the new diagnosis, my pain level is probably only about 3-4/10 most of the time. I don't take a lot of pain meds. By far the worst part of this is the fatigue. I'm like you crunchy, I get up and get going and then just run out of steam, usually about half way through what I am doing. Afternoons at about 5 is my down time, I sit at work and if it isn't moderately busy I have to fight to keep my eyes open and not make mistakes when I'm billing someone after their Dr visit. (my doctor always kindly points out when I stuff things up)
Fatigue is my constant pain in the butt. I don't know what normal is like any more. I too lose chunks of time and can defintely put it down to sleep deprivation and fatigue. I lose words, trains of thought, the ability to make a decision, sort of like early Alzheimers.
I would love to just feel energetic again!
You know, I have had trouble with my joints for years. The pain and the fatigue has always been there. I am very tired of being tired, and so tired of telling people (when they ask what is wrong) this. They don't get it. Anyone can say they are tired (most people I work with complain all the time they are tired), but this is such a deep down and heavy tiredness. I tried tried everything to get rid of it. I tried to sleep more, that didn't work. I tried to sleep less. That didn't work. I worked out plenty. I worked out less when people said I was over exercising. I took vactaions. I stayed home. I saw speicalists who told me I was either too young to have arthritis (I was 20 at the time), or that it was a "mechanical" problem and that it was growing pains. Neer mind of the fact I had stopped growing! No treatments were given to me though. I never had a second appointment for any of the specialists... one even ignored me the one time I saw him by eating his lunch in front of me. That is when I decided that I will never ever seak anyone's help for this ever again. I will go it alone. I had to rely on advil for some relief, and believe that this was all in my head. I guess all this to say, that the mind games is what gots me the most. I look fine most days. At work, nobody sees my swelling feet or knees because I wear loose scrubs. Finally, last month, my family doctor saw my knee, ankle, and wrist swelling. Befor then, they would swell, but when I would finally get to see a doctor, it had gone down! My tests all pointed to arthritis, but when I would see a specialist, the joints won't be inflamed. This month is the first time though that I had what I would call a full blown flair, and HAD to go see someone for it. I finally had a day of no swelling yesterday and I could actually move. I couldn't believe this is how I was supposed to feel! It had been so long since I felt normal. It was such a relief! I am a positive person. I don't like saying this hurts, that hurts, I am tired....and nobody ever hears me say it much because I know it don't really mean anything to anyone anymore because I have said it often in the past. I have learned that everyone will shrug it off. Including the doctors that I have seen. Of all things RA has given me, the feeling of isolation and being alone in what I am feeling is by far the worst for me. Crunchy, I wake up in the morning and I say, "I'm tired." At the end of the day, I say, "I'm tired." I'm never not tired. Work a little, work a lot, I'm always exhausted. But it's hard to say which is worse, the constant fatigue or the constant pain in my hands and feet. Even though I'm always tired, I never stop. I can work through a 20-hr. day, if I have to. It would be nice to, just once, wake up & feel rested.Gee, I feel bad for all of us. And, now I feel lucky in some ways too. When I got sick, I got really bad fast. No one at work understood. Except they believed me. My first symptom was not being able to see. I went in one day at work and I couldn't read anything on my screen. For a whole week it was like this. I went my Primary and he freaked! He put me on this huge dose of Prednisone - 60 mg and said I might have giant cell artitmis(?). People get that in their 70s, I was 43. They did a biopsy. It was clear. Then the doctors in this office collectively decided that nothing was wrong with me. Two weeks later I am in the hosptial with chest pains. They sent me home, then back in the hospital with chest pains again. Then, ER visit where they thought I had a blood clot in my lungs.
So, I got scared. My parents said "come home, we'll take care of you." Ha! Big mistake. They didn't understand. They made fun of me and couldn't recognize the illness at all. Finally, after many, many affronts, I just walked out the door with my daughter and a couple of suitcases.
Afterwards, I found people who cared. I went through some really rough times, including being homeless. Even there, I found people who cared. God was really gracious with me. He gave me someone all along the path.
The funny thing is that my path took me right back to Phoenix where I live now. I went back to the same job. People's attitudes changed immensely. Though they still don't get the daily struggle thing or the constant pain. But I think it's more because they feel helpless. That's their way of coping with someone they care about hurting. They don't know what to say, so they make light of it.
I also learned that some my friends were very toxic for me. I learned that my children are sources of great support and compassion. I used my "down time" to reconnect with people that I know love me no matter what. This included an aunt who has since died and another Uncle I write everyday. It also includes childhood friends who also have similar health problems. I can call them and I say, "I hurt, I'm tired," and it bears no further explanation. We cry together. Then, we laugh. Then, we go on.
Collect other souls into your life. Don't waste time on people who can't possibly care.
Surprisingly, I have since had people who have come with me at work and had them tell me how much they admire me for going on. They know I left because I got ill. They saw me use a cane and overcome the cane. Sometimes the support is there and you don't know it. Sometimes you are somebody else's hero and you don't know that either. But take it on faith, each of you are.
Deanna, you're an inspiration. Bless your heart. Deanna, Fiona is right. You are an inspiration. Thanks for your kinds words.When you shuffle when you walk or can't use your hands, it is very frustrating.
Crunchy,
I am so happy that you are going to get the sleep study. Maybe they will discover something that will help. I have found that if they do a tweak here and a tweak there, I really do see some improvement.
And
Okay it is a different day and I think I want to change my vote from fatigue to pain. It was a very bad night with pain, aggravated further by the physical therapy. Ouch! Ouch! Ouch!
I wanted to share something with all of you about pain that I wrote sometime ago. Maybe some of you feel the same way.
“Shadowed”
Tell me pain is not my shadow.
Tell me it is not my friend.
Like a constant companion it haunts my moments.
It has used up its welcome here.
It has no place and must vacate its chair.
Here it is again.
Seems there is no escape.
Always next to me.
Always with me.
Oh, but if a lover was ever so close.
--Deanna
Deana, I love poetry. It is a great way to get those feelings out. Your poem about pain is right on
But, my left wrist is my enemy. It always hurts and i work with my series of websites so i have to type all day long and have to wear a brace when it's bad.
Also stomach problems from meds with gas and burning, i have to take a ton of zantac and prilosec a day.
Deanna very nice poem!!!!