I've been in so much pain that I've contacted my rheumy 3 times in the last 2 weeks. I am getting so depressed and overwhelmed because it just doesn't seem to end.
The first time I called he gave me a pred pack, then the second time an extended dosing of pred (20 mg for 5 days, 15 mg for 5 days, etc), but neither helped much at all (much to my surprise). In fact, the only real result I can see is that I've gained 5 lbs (now at my all-time-heaviest, yay!) and aggravated my acid reflux.
This time he's given me a prescription for Percocet/oxycodone (instead of my regular Vicodin/hydrocodone) to hold me over until I see him on Wednesday, so I'm hoping to get some relief from that when I fill it tonight. At this point, I have pain in both hands, both forearms, one shoulder, both knees and both feet. I have inflammation/swelling in my hands and my ankles that I can see, even if it's not apparent to others. And I have an achy pain in my sides and my mid-back that makes me feel like someone beat me up.
I am expecting to start Rituxan after my RD visit, but as I said previously, with my Florida vacation trip and my sister's wedding (and related activities) in October, I really don't think I can start the infusions until November. OTOH, I have no idea how I could hold up til then if I keep feeling the way I do. Plus I'm trying to keep things together at work (I've already been out way too many days) and I'm starting to feel like I can't do it much longer.
This pity party has been going on way too long. I need to start feeling hopeful again, but I'm not sure how. Even if the Rituxan were a "miracle treatment" for me, it's still a ways off, and it won't fix the fibro and spine stuff. I feel like I keep lowering my expectations, and there doesn't seem to be a bottom.
Sorry for the long depressing post. I will say this...I'm really looking forward to the Fall weather that's starting...it's my favorite season.
Kelly
I am so sorry to read you are feeling so bad. I wish I could help because I would.
I have hardly been on any of the drugs I see people mention so I don't know how well they work or not. My doc doesn't like giving out meds and about all I can get is an anti-inflamority and some nexium and that's about it. So I can't suggest anything, I'm sorry.
I truly wish I knew how to help with the back as I am dealing with that right now. But I am not sure if I did something or if "mother nature" is playing a cruel trick on me if you know what I mean.
Glad to hear fall makes you smile. Not me. lol I only like spring and summer *warm*. I do like halloween I still dress up with my kids. I think my youngest and I will be tigger. Again. He was a couple yrs ago and insist he WILL be again even though the outfit is too short. *sigh*
Prayers going your way that you start feeling good soon. Hang in there.
Suzanne, I'm so sorry about your pain and inflammation.
You have my body. Nothing really has helped me except for 30 mg. of Pred. long term until I started Remicade infusions and upped my MXT to 20mg. I'm now 75% better than I was and mentally I'm alert and feel like I have my brain back. I'm still fatigued but I think that's due to some of the meds and tapering to 8mg of Pred this week.
What I'm trying to tell you is to start the meds ASAP, irregardless of what else is going on in your life. You should be #1 priority and if you're willing to start you'll find a way to work them in and around the schedule that's upcoming. You may have to alter your schedule. You may be able to get an infusion in Florida. There may be a way. I've gotten my Remicade infusions when we've been traveling. I carry the Remicade RX with amounts and dosage, and instructions. A copy of my most current labs and a copy of current office notes. I've been able to get them at the infusion centers at the hospitals.
Take care, pain is so wearing and hopefully the Percocet will help. It might be enough to get you through the next month if you decide to wait. I truly understand how the pain affects every aspect of your life. Take care. Lindy
Suzanne - you are in my thoughts and prayers, nobody deserves to suffer like this, especially you, with the wonderful spiritual soul that you have. The hardest part is knowing it won't quit, and then you realize you won't die from the pain, and then that's when you start to lose hope. We will hold your hope for you and keep it safe and strong for when you are ready to take it back, and we are all pulling for you. CathyDear Suzanne, KEEP calling your doctor. They need to know how badly you feel. That's their job to help us. My doc has so many patients that he couldn't possibly keep track of my pain and suffering if I didn't call him ALL the time. Stick up for yourself!!, you deserve to be pain free with all the meds on the market , surely something will help yu out. LyndaLynda makes a very good point about the number of patients our Rheumys have. I'm sorry you are hurting so! Demand something to help your pain when you go Wed. we will all be there with you in spirit to nudge you along. Please rest and take care until then (((hugs)))Suzanne,Suzanne- I really hope you feel better soon and please dont apologise for your post, its good to vent and we all have been to our own pity party
Take care sweetie
I love to throw my pity parties at Chez Arthritis Insight...the best people always drop by!
I guess I have been feeling a little bit, oh I don't know, like a pest that I keep calling the dr, but thanks for reminding me that's what he's there for.
In the last few hours, my ankles have really swelled up, and that's with the pred. So hubby picked up the oxycodone a little while ago (so I wouldn't have to waddle around with my swollen feets) and I'm hoping it will kick my butt in short order.
I am happy to have the windows open and get some cool autumnish night air inside. Plus a nice surprise was that our new dinette set came today (it wasn't due until next week) and it's so beautiful, and yet so comfy (chairs are wide, with rounded backs and padded seats). Plus it fits perfectly in my kitchen!
Lindy, I do understand your point about priorities. But I don't know if I'm ready to put everything second because that would feel like "it" is winning somehow. LOL...as if "it" is not already winning right this moment...
And Cordy, you are so right that something has to happen in between. That's been my issue all along...wait for this medicine to work, ok now wait for that medicine to work...this is no way to live. I've been waiting for 1.5 years just on the RA, although I know many people here have waited even longer just to get a dx.
Robin, I luv tigger! I think I just need to get my bounce back.
Right now I will just focus on 1) getting some sleep tonight and 2) waking up for (ugh) bloodwork in the morning. Talk about waiting, sometimes I think I'm in the waiting room at the lab for 1.5 years. < =text/>_popupControl(); Oh Sooz....((((hugs))) as everyone else said...keep on calling your doc. Sometimes the ole RA can win a battle...but it will never win the war. Maybe try to sit down and take a look at your schedule and see if there is any way to squeeze in the Rituxin before everything gets all crazy. I say that because maybe just maybe you will get a small amount of relief before things get real hectic.
Sometimes pred just doesn't help because the swelling etc. is just so way out of control. Just remember it is not your fault it got that way. It is the nature of the beast.
Take your pain meds because you deserve to be as pain free as possible.
I love the new dinette set! It is really nice!! I love the autumn also! The cool breezes...being able to open my windows...the nice fresh air while you are sleeping all snuggled under blankets or an electric blanket.
Liz, it's so good to see you around! I know the 'puter was a big problem, but even since its up and running, I haven't seen you much. How are you feeling?
The swelling is really amazing to me. Everytime I get close to thinking that maybe I don't have RA, and it's just something else/all in my mind/fibro, the swelling comes around to say Nah!
Well the Percocet is helping some, but not much, which makes me nervous. I also forgot to mention that rheumy wants me to increase the Imuran from 2x to 3x a day....but I'm not sure it's helping to begin with.
In the meantime, can I borrow your warden? Mine's too lax and let's me do too much.
If didn't help that when I got up at 4:30 am to take my first Percocet, I believe I got up, stood there, reset the alarm, went back to bed and never took it.
So I'm counting the minutes to my rheumy appt on Wednesday afternoon.