How do you deal with not being able to do anything?

Ace
I'm right there with you. When I struggle out of bed I cry all the way to the kitchen to get the pain meds (tramadol and neurontin) and wait an hour for them to start working. I have to use two hands just to pick up a cup of coffee. Even then they only lessen the pain enough to get in the shower. Then I sit in my tiny hot tub and do stretches. That helps enough to get dressed.
I don't have time for hobbies, can't use the hands and arms well enough for that on top of the work I have to do - shovelling and plowing snow with a tractor, scrubbing the mess the tile guys left from the urethane grout they used remodelling the bathroom.
I took an extra tramadol because the first one this morning just wasn't enough. I like how it helps me wake up, diminishes the depression, keeps the neurontin from putting me to sleep.
Noontime. I took a Vicodin and a half (1mg) diazepam (for muscle relaxing). In a little while I'll be able to drive to the store for groceries and degreaser for the grout mess.
I'd call my rheumatologist, but he's in the hospital getting chemo, probably will retire. It's really hard to find a good one and then it takes 3 months to get an appointment. My two pain docs just don't understand fibro, only do depomedrol shots, which helps the sciatica, and spine pain, but not the muscle pain. I can't have any more of those for another year anyway. 3 a year limit they say. I called the oncologist to see if I can take something other than Femara or take it every other day. Only got to talk to a nurse who said go see a psychiatrist and get on tranquilizers. My rheumatologist already had me try them, but I don't tolerate them, get suicidal feelings, but she insisted - idiot! She claimed not to ever have heard of pain being caused by Femara. I tried 3 weeks "vacation," but that didn't help. I can't afford it anyway, so I'll probably just stop taking it. I do have an appointment to talk with the oncologist next week. (No, there is no help if you are on Medicare and household income is decent. No matter that we have no savings after putting 4 kids through expensive colleges, which they needed because the state schools just aren't on their level.)
Noon-thirty. The diazepam is starting to work. Gotta get going before it wears off!
I know I'm not the only one with this pain, not the worst either. Just letting you know, Ace, that you're not alone. I appreciate all the tips I get from this forum!!!

Well Ace, I understand completely. I don't even make it to a chair. I'm in bed almost 24 hours a day. Yes, I get up to go to the bathroom. I try to get on the treadmill about 15 minutes twice a day and I have a front stairway (16 stairs) and a back stairway (also 16 stairs) that I make up and down 4 times a day, one by one in terrible pain. I have wedges for my legs and my back that keep me in different positions in bed. I go to a pm group that I have come to find out is probably the worst pm clinic on the face of the planet. I went on Jan. 26th and I go back on Feb. 24th. They changed my medication for the first time in the last 3 years from hydrocodone 10/500 x 4 daily to oxycodone 10/325 x 4 daily and I have felt no better. I have printed off and filled out the forms for pain so that when I go back in, I can take them to the person who see's me. Ace, don't feel bad or guilty. You are doing the best you know how to do with what you have right now. If you are on an anti depressant maybe the doc can up the dosage and if not, maybe you could give it a try. For those people who can “pull themselves up by the bootstraps” and get going, I am so blessed for you! For those of us who can’t? I’m tired of feeling guilty! Chutz said, “It's like this...I can hurt and do nothing or I can hurt and do something! Either way I'm going to hurt but at least doing something I get my mind off the pain and have some fun too.” All I can say about that is this forum has taught me one major thing and that is to FIGHT! Fight for myself, for my pain control, for my family, for my friends, my animals, to clean my house…and the list goes on! If you guys can experience so much relief by medication combos, then why the heck can’t I? I’m going to demand it and if it’s not given, I’ll go some place else. I understand Ace, and I believe all of us are right there beside you every baby step of the way!

I don't know what I did, but I missed a lot of you all's post, I did go back and read them, I want to thank all of you for the concern and kind words. I know that there are all kinds of people out there have it much,much worst than me!!

I take 200mg Zolt, Vicoden 7.5 4 times a day,Flexeril 10mg 2 times,Lorazopam .5mg 2 times, Bupropion 300mg, and 9-12 Tramadol daily.

Thanks again to everyone!

ACE

Ace:

After 2-3 years of mourning, you'll begin to accept it. I can't ski anymore, so I sit at the lodge and watch my kids have fun. Boating is dicey, so I never go out unless it's flat calm. Riding a bike is out--after a couple slow speed falls. Hiking to trout streams is impossible, so I bought a jeep. walking is hard, so I bought a golf cart.

I knew my marketability was shrinking in the jobs department, so I started a business while on short term disability. I'm reading two books on pain, but keeping a journal and focusing on pain all the time is just too depressing. I read more classics that did not interest me when I was young. I added more premium channels and a DVR. Life's different for sure. But in some ways it's better.

Good luck

Sorry Ace, sure wish I could've helped you better...(I didn't know about the physical therapy or I had forgotten)
For me physical therapy is mostly getttting the ultra sound treatments and a few low keyed exercises that are not too hard on my back and he doesn't push me, some physical therapies place can push to hard and end up hurting people more somewhat like what they made you go thru, I had one place that pushed me too hard and I never went back...I sure hope you can find something that might help and like Mike1x said I sure hope you find it and don't give up, cause seems like giving up would be easy, but it's harder on the ones we love if we give up.
Good Luck and I hope you can get a low pain day soon.
Lots of soft hugz to you...
(((((((((((((((((((((((((((((((((((((((((((ACE)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

Hi Ace. I just wanted to tell you that I understand where you are at, really I do. I have been in your same frame of mind until just recently when I began to see a Pain Psychologist a year ago. He really helped me understand that I will always be in some kind of pain, it's just how I percieve my life WITH the pain that counts. Pain is pain, no matter how you look at it and some days I do have that "Why do I bother" attitude. But I still get out of bed....I still get dressed.....I still go get the mail.....and I make it (somehow) through the day.

I think that Chutz and everyone else is right as far as what they do to keep their pain in check. I put the pain in a "Box" in the back of my mind. Mind you, I have had to get a bigger box as of late, but it still fits into that box in the back of my mind. Yeah, if I think to much about my back it hurts like mad and makes it imbareable (sp) to do hardly anything. But my psych doc that I see helps out tons with realizing what I have to do to make my pain, what I call "on the back burner".

Sure I may cry at times cause it hurts so bad and winter time is a horrible time for people who have arthritis in the "getting old" bones, but you always have to look at the positive to make sense of things. An example of this would be; My pain is more excruciating in the mornings and evenings, so to combat this I have taken to meditating in the mornings so that my mind is totally void of thought (I don't even think about the pain at that time) and hat makes it to where I can focus on the remainder of my day. Evenings I spend it with hubby, tv and a good cup of herbal tea. But this might not work for you, Ace, so what you have to do is find those things that work. Maybe its finding that "Special Place" in your mind that you can go to. Or maybe its fiddling with a piece of tape and concetrating on ony the sticky stuff they put on it to make your pain subside.

I know you can do this Ace, your a strong person!

Extra hugsssss

Scarred

Dear Ace,

Your pain doctor or the pain psychologist?

Hey Ace lungger , Yes I was very active before and that is what makes it so hard for us I beleive .Being physucally so active I found for me distracted me from a lot of things about myself I didn'y necesscarily want to confront .Now because of my physical limitations I must confront them and its been a scary , tough but rewarding journey .I am learning to be mentally active which is difficult for me but rewarding when done .Because first you will havr to sort out the demons that you have .But what could be more satisfying then that .I 've seen things about myself I never would have seen otherwise and mended relationships with myself and those close to me. But it is scary , its a place I avoided going because I didn't understand how much value there is there , it just frightened me terribly . A therapist can guide you thru this , how you think about your life is the most important ingrediant in how you feel about yourself .If you can be ok with who you are there is nothing you can't do . it doesn't mean it will be easy but it won't be a problem , it won't be a negative .Just another challenge to enrich your life .Its only a problem when you think it shouldn't be that way , if you accept it as part of life it becomes much easier to handle . There will always be times I wish I could be more physically active but I can live with that . Good luck .to you and us and God bless .

Ace;

We talk about how I am dealing with the pain for the day. I have to keep track of my pain each day so that he can see where it is worse and help me focus on what caused it to increase. Goals are a huge thing. He just helps me understand my pain and understand how to help me live with the daily stress that I feel from it.