Everything in excess -- giving up....

[vdub]

I am so overwhelmed with blood tests, doc appts, and drugs that I am simply giving up. At least for a while. I'm now on about 18 drugs/day, but it varies up and down. A month ago I was on 23.

For 4 years I have been changing drugs in an attempt to get rid of the pain. One of the drugs I'm on is tramadol (8/day), which is a light-weight pain pill. I was on 8/day hydrocodone to manage the joint and muscle pain, but the side-effects were no fun at all.

Anyway, the docs have been trying very hard to adjust a whole miriad of things to get to the bottom of what is causing the pain. I've been up and down on mtx, pred, hydrocortisone, levothyroxine, you name it, it's been adjusted. But, as you guys know, many of these drugs take a month or more to start taking effect, so it's difficult to tell what is really happening. I must say, though, that I do feel great when I'm on a bunch of pred.

I have great docs and commend them for a valiant attempt, but I decided a week ago to take a break from things. I'll have some pain, but I can deal with it -- at least, with the pain pills, I can deal with it. So, I"m giving up for a while.... Just so tired of it all. I'm not quitting the meds (obviously), just quitting the changes. So far, so good. Yes, I have pain, but it's not excruciating. It will limit my activities somewhat, but that's kind of the nature of this disease.

[pberggren1]

I can certainly understand why you choose this. I don't think it is a risk really what you are doing. I know you know your diseases and body very well and will go back to your docs if you feel things are getting worse. I wish you the best vdub. Please keep us updated on your progress.

[mishb]

I was certainly dreading reading what you were going to say vdub however, I'm glad I read it and I'm equally glad that it wasn't what I expected.

If you are able to deal with the pain, then I think some time without those horrible meds would be good for you.........as long as you continue taking the ones that are keeping you here with us

My fingers are crossed that the pain does not get too bad for you

[vdub]

I shouldn't be complaining so much -- it's very unbecoming. Many people have it worse than me. Sometimes I just get to the point of "uuughh", more pills....

[pberggren1]

You can vent and complain, but I know what you mean. No one likes to a complainer. And you are right, it is unbecoming but it is our human nature. The spirit is willing but the flesh is weak. At the end of the day we all have so much to be thankful for.

[windchime]

This is the right place to express yourself, don't ever apologize for that. It is what it is. This disease can take a toll over time and you are entitled to feel fed up. Taking a "vacation" from changing drugs is a good idea. Maybe something will have time to kick in. In any event I think you know when it's time to have a chat with the doc if you're getting worse. Hang in there and know we are here for you. Hugs to you.

[Debbie C]

Vdub, don't ever apolagize for venting on here,that's what we are here for. Lord Knows I do it enough! I am sorry you have so much pain and my gosh "THE PILLS" I don't blame you for wanting to cut back on them,maybe less is better since each one has its own side effects,your body is getting so overwhelmed with that. I hope you can find 1 med. that will help. Take care and keep us updated on the outcome

[annekat]

vdub, it may be true that some people have it worse than you, but by the same token, some of us, like me, have it better than you do. I only take 3 meds, MTX, pred, and Bactrim, and while I've had a little joint pain here and there, I have experienced nothing like what you are describing, and no pain killers have ever been needed. So I think you have the right to complain once in awhile; you do it very seldom. I'm glad you are taking matters into your own hands and giving yourself a break from the exhaustive routine that never seems to work all the way. Whatever you mean by "giving up", go for it, do it your way, get some rest, and avoid any stress, if possible. You can always change your plan and/or see a doc if things become unmanageable. It's good that you posted about this because it is another dimension of having Wegs that I, for one, was unfamiliar with, and we all need to learn as much as we can about this disease and what our fellow sufferers go through. Best to you.

[vdub]

So far, so good... I'm feeling pretty decent. I've been on stable drugs for about 10 days now. I ache quite a bit when I first get up in the mornings, but that goes away a couple hours after taking my pills. :-)

[renidrag]

Since remission and WG drug free, I had hoped to also be pain free but that is not the reality of my new normal. Not excruciating just there, every day,there. Some times I can put it in the back of my mind but not always. Then of course I have the Tinnitis (sp) at all times. Some times I wonder how I can fall asleep with all the noise in my head. Any way, didn't mean to go on so, just to say I know you will be ok, it is maybe your second new normal. Good to hear from you and best of luck. As an aside, I can't help but think we could all put up an new avatar like Anne's. Would be kinda fun to look at our healthy selves in younger days. Thanks Anne.
Dale