I had to go off work because I haven't been responding to the medications and I'm having increasing joint damage. My sed rate has also been high. Fatigue high. Pain uncontrollable. Daily function terrible. Desperately waiting for SS and LTD.
I'm on the maximum for RA: Enbrel (50 mg weekly and not working), MTX-25 mg, Prednisone-12 mg (trying to taper - ha!), Plaquenil (400 mg) plus other meds. It kind of hit home when I told my daughter I actually have 5 automimmune diseases and I realize that may be why I can't get on top of it.
So, I am forced off work because they can't find a good solution. I kind of feel like they gave up on me. Now, I am forced on to the state program. The earliest I can see a surgeon for my 2 bad knees and my dysfunctional shoulder is the end of November. The earliest I can see a Rheumy again is end of January.
Now, I am developing some kind of nodules between the fingers of my left hand.
When is this stuff supposed to work?
Oh sweetie, I'm so sorry. I understand the frustration...and depression....and pain....and fatigue..and all the other CRAP, it all sucks!
I'm on mostly the same meds, except I do humira once weekly, currently on 17.5mg prednisone, tapering down from 30 for several weeks and placquenil 200mg twice a day.
I'm going to be forced to apply for disability soon as well. I can barely just make it to work luckily I have a low key job but I can't take much more either!!
I have no real advice, just sympathy, love and hugs!
Deanna,Yup - Hugs again. This is one tough disease. Physically, emotionally, and financially.
You what they say, "when you get to the end of your rope - you tie a knot in it and hang on". Picture yourself not dangling from the rope but with your feet on your ra friends shoulders.
If I have the slightest problem though, I am going to go into my primary and raise the issue. I think I am just so worn down that I don't care to really see the doctors. I'm tired of bad news and that's about all they've given me in months.
Of course, that isn't helping with the shoulder problem. Exercises seem to be aggravating that situation.
January is a long time away. But I want to see the ortho the most.
Deanna, It is such a long slow process. Just one accomplishment at a time. You are doing the right thing. First things first, get a good doctor, no matter how many you have to go through to find the right one. It is hard. Thank God we have this board. Remember, we have survived tough times in the past - we will survive this one. Good to see you are posting. You have so much to give and seem to always be giving. Don't beat yourself up that things are not happening fast enough - YOU ARE DOING ALL YOU CAN DO You are loved. A big gentle hug to you Deanna. You will be in my prayers.Hello, Deanna, I was going to post today to ask how the computer problems were going but from this thread I gather none too well. Sorry to hear it seems to be getting worse instead of better.
ROXY has a good point - one step at a time. That is, if you can, concentrate on the worst pain area, research like hell, talk to your doctor about it and see if you can get relief in that one area. It may take time but if successful, move onto the next one. I don't believe the meds are good enough to cure or lessen the pain all over the body. Also, there are sometimes other factors, such as the elbow and hand I've previously written about. A cortisone injection in the wrist followed by wearing a wrist splint has totally removed the elbow pain (the one that used to wake me at night with tears in my eyes.) The hand likewise though I still have a lesser problem with it. Next step, feet. (Pardon the pun!) No doubt the meds have been contributing as well.
The point is, the elbow pain was brought on by CTS aggravated by RA causing inflammation and swelling. The method of attack was not towards the RA so much but very specific toward reducing the swelling in the carpel tunnel. Related, sure, but not identical.
I now suspect the foot problems may be aggravated by RA induced pinching of a nerve somewhere between the spinal chord and the feet, like a mini carpel tunnel where the nerve is attached to the body with muscles. tendons etc. Will have a nerve conduction test next week to follow up this theory. If I'm right, we'll know just where to attack with possibly a cortisone injection.
Long-winded I know but wanted to share. BTW - thanks for your excellent reply in the "aggro" thread, and to some of the others, now feel comfortable about this. Best wishes, Des
Thanks for all the hugs and kind words.
Dessy, I'm glad to get the update on your problems. I think you are right to some extent. My main problems are structural. The Rheumy did mention that maybe I was developing carpal tunnel. I know my whole left arm is involved and impossible to manage. I guess I'm going to have to get back with the primary and see if they will do anything else for me. Even another month's time seems too long. I really want that fixed first.
I'm afraid to have any more cortisone injections in that arm as more than one tendon swells regularly (daily). I already wear wrist splints, but it doesn't help like it used to.
I definitely need something better to deal with the RA and FM. The fatigue is overwhelming. I never leave the stage of a flare.
I'm just going to have to be a pain for my doctor. Three different doctors last week, so I think I'll wait until next week. But I need to push on this.
On the "arggo" thread, I thought you deserved an explanation because your question was so sincere.
Deanna,
Don't give up. The others have given you good advice. One step at a time. You're making the right first step: to see your doctor. I bet the shoulder is connected in some way to the whole carpel tunnel syndrome. I know that's what's causing the nerve damage in both my hands and when enflamed can be felt all the way up to my shoulder. It could also be the ulnar nerve. The point is, there may be a fix. Maybe a prednisone shot along with some OT or PT could relieve some of the pain. If it's nerve trouble, you don't want to wait. Pressure your doctor. The squeeky wheel you know.
You are such a strong person and a real support to everyone else. Now that you are off work, use the time to bug your doctors and get healthy. Ask to try alternate meds. Get another opinion or two. Do something spiritual with your time, just for you so that you can at least mentally get away from the situation for a while. Dictate into a tape ideas for those books you've talked about. What do you have to lose?
Sometimes life can be agonizingly hard. I know what that feels like. It's difficult to put into words the inner turmoil that wracks our souls. I've found that just putting some of those feelings to words can take some of the power out of the painful struggle we endure...diffuse some of the frustration and despair. Just being able to name something that scares us can make it less frightening. When we don't have words of our own that seem worthy to express these feelings, borrowing other's words can also be a comfort...just to know that others have endured agonizing circumstances and yet their spirit soared. My favorite poet, John Keats, died at the age of 25, after several miserable years succumbing to tuberculosis. In the midst of his pain he wrote the following verses, during what he called his posthumous years. It talks about fears, and regrets...and triumph of a sort. Maybe it will help you put words to some of what your feeling and be a source of healing.
When I have fears
by John Keats
WHEN I have fears that I may cease to be
Before my pen has glean’d my teeming brain,
Before high piled books, in charact’ry,
Hold like rich garners the full-ripen’d grain;
When I behold, upon the night’s starr’d face,
Huge cloudy symbols of a high romance,
And think that I may never live to trace
Their shadows, with the magic hand of chance;
And when I feel, fair creature of an hour!
That I shall never look upon thee more,
Never have relish in the faery power
Of unreflecting love! - then on the shore
Of the wide world I stand alone, and think
Till Love and Fame to nothingness do sink.
Deanna,
Tell yourself over and over that your body is healing, picture what you want, tell yourself what you want as you drift off to sleep and truly believe it is happening.
Your subconscience will listen and provide!
I know. But just try it!
I love the advice. Linda, I have started dictating into the tape recorder. For some reason, the tape recorder with record just fine, will transfer to the computer just fine, but the voice recognition software cannot understand the taped version. It does however understand me (about 65% of the time) if I sit and dictate directly into the computer. I need to upgrade, but don't have the money for new software at this time. But maybe I will just collect the recordings and burn them to CD for a backup until I get things working properly.
I write by hand a lot. Because my right hand doesn't tire as easily. But last night I got the tremors really bad again because I did a lot sitting up. I think that 2.5 earthquake in Hawaii moved over to my bed. Oh, remember the days when we could make our own earthquakes with the one we loved. Guess I graduated to making mine on my own. "No thanks, I don't need a quarter for the special vibrating bed. I can handle it all on my own."
Alan, I truly understand Keats in this poem. That's haw I feel like I have so much to communicate still and I'll be gone before I get it all releases. I really love that you share not only these poems but your own thoughts. You seem to love beauty. Ah, I wish I had a friend here that was like that.
Tam, your advice is very good. I guess I have trouble visualizing right now. It would help if I wasn't constantly having to write down what was wrong with me for all the government entities. I could live in some etheral plain of denial and dream of walking through fields and watching nature endlessly. (The sound of the cane clunking against the ground disrupts the peace of this tranquil scene. And the rubbing of velcro on my knee braces seems to scare small, delicate creatures away.)
What I do every night is write one of my stories in my head. These stories are filled with romance, adventure and magic. There's some tragedy thrown in to make it interesting. But it is a world far removed from pain and limitations. There the men and women can do battle against clearly defined evils, not fighting doctors or medical systems gone awry.
I was so in the mood for your replies today. Thanks.
You guys are all so amazingly articulate it is wonderful.Cassie, my GP put me on that several years ago. I started having terrible tremors in my hands and my Rheumy took me off. He said it was easy to overdose on it.
Now, I don't know what the truth of the matter is, but the hand tremors that I have occassionally are not near as bad as they were then. It didn't help my pain at all.
That makes me a bit leary to try it again. But I'd sure like to know what others have experienced.
Deanna...geeze...it just makes me so mad...I wish I knew a way for you to be able to go back on Remicade.