I've been in bed since last Sunday - untl today (my first day of a Medrol taper) when I went to two stores with my friend. I was using my Rollator walker which is wonderful because it take very little pressure from my arms to make it work...My shoulders and elbows were not screaming at me...more like twinges. My spine and next however were letting me know they weren't happy.. I love the seat on my walker....I used it frequently today. My friend has to examine EVERYTHING in the store ...I was wishing I had a way to make her speed things up....I could have just told her the truth but didn't want her to feel badly and I know she did have a couple of things she needed....so I sucked it up and prayed to be home.
Tomorrow is church and I'm not planning on going. Today's venture proved to me that I'm not "there yet" I'm bored to tears being stuck in this bed..but it beats the pain and exhaustion of doing too much.
I don't want you to think I'm a whuss. But this flare has broken every record in my history. My daughter had to give me a shower and wash my hair. I just couldn't reach my head with these elbows and shoulders....I even have been having pain in my dreams. At least I've been aware of my pain while sleeping. And have had to get up numerous times to change to the recliner or the hospital bed....back and forth. How long , once you;re on steroids, does it usually take to begin to feel better? What happens if you DON"T feel better? what's the next step?
Wow...I have a friend like that too :) It makes shopping tough especially when you're in pain. I'm glad you're finding the walker helpful. Sometimes it's therapeutic just to get out for a while. Last time I went to the mall, after an hour I felt terrible and had to leave. I'm reluctant to go back.
So far steroids haven't helped me but I know others have found steroids helpful. I hope they help you. I'm sorry I don't have a more helpful answer.
That's it, Dini?? "sorry you don't feel better, See you next month??"
Gosh I was hoping there was some magic potion they pulled out when all else failed. SHEEEESH, Doctors really should learn to be helpful, I mean what are we paying them for???
Dini said:
Wow...I have a friend like that too :) It makes shopping tough especially when you're in pain. I'm glad you're finding the walker helpful. Sometimes it's therapeutic just to get out for a while. Last time I went to the mall, after an hour I felt terrible and had to leave. I'm reluctant to go back.
So far steroids haven't helped me but I know others have found steroids helpful. I hope they help you. I'm sorry I don't have a more helpful answer.
I'm glad to hear that at least your daughter stepped up to help you out tonight. I hope you get some relief soon.
Thanks Stoney. Yes, my daughter has been fairly helpful. She does make , "Do I HAFTA??" Noises but in the end she does help. She was the only one to notice I hadn't been out of my bed in four days.
What happens if you don't feel better? You get more meds. Unfortunately. Sometimes it takes time to get the right mix of the right meds to help. Everyone is different, so it is a trial and error process to get just the right balance. Then the balance changes and you start over. I know it is frustrating and it HURTS. I'm so sorry that you are having to deal with it all, and I wish that there was a cookie-cutter answer that would solve the problem the same way for everyone. Wouldn't that be our own little slice of heaven? :)
If things are significantly worse than the last time you went to your Rheumy, call him/her and make an emergency appointment. Chances are he/she will have some suggestions. Take a copy of what you wrote above and make him read it. Sometimes we minimalise our difficulties once we get to the doctor because either a) we happen to be having a good day and the immediacy of the pain/stiffness fades into the background (this is a defense mechanism that our brain engages in order to keep us going), or b) the doc seems to be in a hurry, and we know there are others out there who are so much worse than us so we just keep quiet and get the appointment over as quickly as possible. There are, I'm sure, a million other reasons....but you get the idea.
I hope things start looking up soon for you. I'll send warm, fuzzy feelings your way.
Fortunately the flare I was writing about here, DID eventually subside...however I feel like it left a bunch of new "hotspots"...I went to the pain doc yesterday and I told her about my painful SI joints and she pressed on them....SHe didin't have to say "does this hurt?" Because I'd literally flown off the table when she touch me. BOth sides. She wants me to get an injection. I wasn't sure if I could do that while still on Actemra. I don't want to interrupt my treatment. My neck also needs an injection. She ordered an MRI ...the last one I had was in 2006 (although I find that hard to believe) When I had my last one...all my doctors freaked out about how bad it was....And I know that now it is MUCH MUCH worse....Monday the 21st is the date for the MRI.
I'm glad! Proactive treatment is the absolute best thing to do in cases like this! I only recently joined, and I decided that in order to be a "real" compassionate and helpful sister to everyone here I needed to make sure I'm responding to the posts, so I'm slowly working my way through them. Even though I understand things change from day to day...MAYBE something I type here might possibly kinda sorta help someone. I'll keep sending those warm, fuzzy feelings. Please, if you can and if you are comfortable with it, come back here and let us know how things go with the MRI.