I am getting very frustrated with this disease. Its symptoms continue to be unpredictable. Joint pain does not get as extreme as it did before dx and meds but the joint pain is almost always there and it seems I am losing energy every day. Yesterday I was having a lot of joint pain (ESPECIALLY my hips and butt bones) and frustrated because I did not get my darvocet refilled. As I am not a person who is used to taking medication, I am also not used to keeping refills around. I did not realize I used up darvocet yesterday and I hurt all day. I also had very little energy. I would do something simple, like plant a plant in the yard, or do the dishes and then I would be exhausted for a couple hours. Today I took the dogs for a walk, short walk, and I have no energy left. Joints are better. I slept 12 hours last night - which I never do. Now I am not only depressed I am just damn bored. I have no energy for my usual hobbies - walks, gardening, even reading seems difficult but I don't want to sleep. How do you all deal with the boredom? I hate what ra has done to my life. It keeps teasing me with good days to just turn around and have all of energy zapped and/or pain that changes from one part of my body to the next. I hate how unpredictable all of this is. I don't know what meds are working, IF they are working, if supplements are good or not. I want to be proactive but have no idea what to do, feel exhausted, bored, sore, achey, and SAD
When I felt the way you do, my doctor offered antidepressants. I was negative about them, but I read here that they help a lot of folks. Something to consider. I was at one point on Vicodin for the pain. That's fine, but remember, that only treats the symptom--not the source. It does not reduce inflamation. Plus it and your darvocet are addictive, so you must be careful. I'm not saying don't take it. Just be careful. And while you're being careful, get your doctor to aim toward the source of the pain--inflammation. Are you taking anything for the inflammation itself other than the methotrexate? Any prednisone? I ask because I found out my sadness and depression were a direct result of the pain. Once the pain was gone, or almost gone, so was the sadness. Think about it--not even being able to get toilet paper off the roll or get up from the toilet without pain has got to make a person sad. I'm thinking about you... I think your best friend right now might be prednisone, taken orally. Is it possible to talk to your doc for that? Is there some reason you got an injection this past time and not a daily pill? Something just occurred to me. If the doc took you off both drugs at the same time, how will you know what actually caused the headaches? Is he going to start you back on one at a time? I can certainly see why you're feeling so depressed. No pain relief and no antidepressant at the same time. Add pain to that. Jeez!!! Nasty little recipe you have there. I'd be sad, too. Call your doctor's office, and tell them they need to do something. You said you like to be proactive. I know you probably don't feel like it, but you're the only one who will...right? Roxy~you have been such an active woman up till now. You worked full time in a very interesting job; where you interacted with other people all day, you hiked, and did other physical activities that you miss dearly. All of that has got to be getting you down as well as the pain. Sara asked about Anti-Inflam. medications and Relefan is an anti-inflam. The MTX is going to zap your energy for a while also don't forget. I know that struggle all too well. I left the office early today and came home and took a nap for about an hour because I think the fatigue was giving me a headache all day. I made myself get up after an hour because I know I wouldn't sleep tonight. My husband wants me to go out to dinner tonight because it's our 7 month anniversary. I'd rather get my jammies on and veg; but it seems like that's all we do!! He's so understanding and will get his PJ's on too at 6:00 in the evening and veg with me after a long days work...but I know he wishes we'd go out more. I hate feeling like I'm letting others down. Rox, I don't have any good advice for you Sweetie. I'm with you....I HATE HAVING RA and every so often I feel the need to shout it from the top of my lungs...but then I have to move on. It's not going away. Have you thought about a new hobby that doesn't take much energy and you can do while sitting in front of the TV with your feet up and ice on your knees? Lots of people knit and do needle point; but my 100 year old fingers won't let me do much of that. You need to distract your mind. I really feel like once you get back to work that's going to help alot with these feelings. Trick is to use your time to the best of your ability to get well enough to get back to work. I know I'm no help at all this afternoon but I wanted you to know I'm thinking of you. Hang in there sister!! Lovie One day at a time. After you get your meds straightened out and you will, things will look better to you. This crappy disease can be horrible today and good (relatively speaking) the next. You've already experienced that. After 24yrs I still haven't excepted the way this disease has effected my life. I have fought it every step of the way. I have also tried to keep a sense of humor about my difficulties. I actually think the sense of humor is what has carried me this far. I take Paxil for depression and it has helped. I function better and my emotions are on a more even keel. Of course it doesn't prevent me from wanting to stand on my front porch and scream "it isn't fair" about 1x a month,
Hang in there, Roxy. There will be better times ahead.
Barb
If it was'nt for the references to your meds, I might have thought your post was written by me. I am feeling so many of the same things you are. I try very hard not to complain and do my best when I feel well to keep up with things, but the truth is I feel CRAPPY and don't see things getting better any time soon. Since this all started a few (3-4 mos seems like forever) I can only remember maybe 1 or 2 good days, we'll call them good although there was still pain, it was not as much as usual. It is actually kind of sick when I had the experience of less pain, I wondered what was wrong with me that I was'nt hurting as much. I feel I totally ruined father's day for my father-in-law yesterday. The kids and I got up early to go to my husband's favorite breakfast spot and half way through the breakfast I as absolutely pain ridden and needed to get home and in bed where I stayed all day. My husband had to call and cx plans with his parents
I don't post alot about my pain and how I feel. I think my symptoms are not as bad as many here so I have gotten into replying to others posts and it takes my focus off of me. This just hit me so close though. I am only on a NSAID at the moment and they are having trouble with the dose which for some reason has to be figured out before my Dr will start the Plaquinil. I'm trying really hard to stay away from rx pain meds, but I am just so tired and at times feel depressed also. The housework does'nt get done, I don't feel like cooking, I have the money to pay the bills yet the basket is full and I'm too overwhelmed to even look at it. I go to work, but, I am preoccupied and don't concentrate well at all. Sorry, I should be trying to give you advice, but all I can do is say "I know how you feel". People will wonder if this is the same Pam S, I'm always so cheerful, little did we know what was just below the surface. I need to snap out of it for my son, I know he is worried and he's so dear he should'nt have a worry in the world. I'm hoping it will help just to get it out a little. lots of love and wishes for better days ahead, Pam Thanks you guys. I needed that
ps - I would hate trying to work right now. I really don't know if I could do it. I respect all of you that are working feeling like this. I miss my job, I can't wait until I feel better !
Roxy, please, please ask him! He may prefer it, but it's not him who's in pain. His preference seems to be affecting your life. Maybe he just doesn't get it. Maybe he's never lived it. You're an articulate woman. You can make him understand. If he has a nurse that listens well, maybe you can get it across through her. Pam S, Godfrey Daniel, as WC Fields would say. Get some pain med and take it. Its obvious you need it right now. You don't need to be a martyr. Call that Rheum... you go to and tell how him how bad you are feeling. You need more than an NSAID. If you had been on better meds you should have been able to join in on Father's Day. It doesn't matter if other people are worse off than you. So what. We are not having a contest here, we're trying to help each other get through each day. One day at a time. If you feel up to it, go outside and scream, "I HATE RA." Go Girl! Barb
Barb
You were talking about wanting to do things iwth your guy, is there a place there with a pool open to the public?? The reason why I ask is the water is good on your joints and does not tire you out and your guy can be there with you and you both can exercise together. I know where you are coming from I am a very active person and I am now just getting back to doing alot of the things I did before Arthur came and visited me and left me with this wonderful present.lolololo
I love a shot of cortizone myself; but it's best when you have one or two particular joints that are just giving you a fit. There's been time when I couldn't raise my arms above my head....or my knees were so bad I couldn't go up the stairs; in those cases a shot really helps, but in your case I think the pills would be better too. Pam~Honey you do not have to be strong and cheery for this group my friend. Of all the people in the world we know exactly how you feel and are here to share your burden. In your defense I know what you mean...I do a little of that myself; but there's no reason for us to "pretend to be strong" with this group. I do enough of that in my day to day life. Theses people here understand. I hope you are feeling better real soon. Lovie Thanks Barb, Roxy and Lovie, Today should be a better day. I have 2 messages in with the Dr over the past few days, but no call back yet. Under alot of stress from every direction at the moment, just needed to get it out a little. I'm not sure why he's waiting either......figured he knew what he was doing, but sounds like maybe not. Anyway, plan to make it a better day for myself, and yes, Barb ............. I HATE RA !! ALOT! Thanks friends
To answer your question "NO Energy, BORED, What do you do?" I sleep, and sleep, and sleep, and sleep and more sleep. I also get on the computer to work on the internet. But most of the time sleep. I have always been a big fan of sleep. I am up maybe 4 hours thru the sunny time of the day, and probably 8 hrs of the night times, and that is mostly trying to go to sleep. Sara - you make a good point about the toilet that just makes me sad, because i have to decide how I am going to get off the pot...lol.
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