How many "almost feeling normal" days do you have each week? I probably have 3-4 depending on the weather. And trying to cram 7 days into 3-4 isn't easy as you all know. I can almost plan on 2 crappy days after taking mtx and the rest is up for grabs. Guess I am having a Friday night pity party, how about you? Hummm... what is a "normal" day? I have never had a "normal" day in my life. The closest I came to probably being normal and almost pain-free was during teenage remission, but even then I had limitations.Now I have 4-5 but prior to last month I may have had only 1 and if I was really lucky 2. Some weeks I'd have 5 good days and then 0 good days for weeks. My days and weeks are so much better now. LindyI've been back on Medrol for the past 2 months, so most of my days have been *relatively* normal...more tolerable is probably a better way to describe it though. I'm never pain-free, as I have a lot of joint damage in both of my knees and feet, and I'm always extremely fatigued. If I only had a little more energy, things would definitely be A LOT more tolerable!The two days after the MTX I feel icky. Then I feel pretty good till the day before the MTX is due. Sometimes I have little flares but nothing I can't live with. I went through a rough time before official diagnosis and now that I am on MTX my life is good. None...Has only stopped when I have been on large doses of Prednisone.
DITTO - NONE YET - except the first couple of times I was on a high dose of pred either! But most days I have a couple of hours in the evenings that aren't too bad - but not without percoset though...
Melly
me too. none . i have had no days without pain . since i came out of the coma nearly 5 years ago.I don't really have normal days either. I have days that are better than an average day for a person with this disease, but normal? Far from it.at the mo, none. hoping enbrel will change that.
anna
I always have pain somewhere, lately my knees but it could easily be my ankles or anything else. It just depends on how severe the pain is, then sometimes I can ignore it, but it's always there. maybe 2 days a week feeling pretty good, but still with pain. 2 days where I feel pretty carpy..the rest is a crap shoot.Hi, good question. Currently, I have days that I feel really fatigued. That is the big difference with me. Right now I'm doing well, don't feel like I'm 'walking' through water' , like I did last month. I report in to my Rheumy about monthly (or sooner if something special comes up) and last month I remember telling him 'i feel soooo tired, all the time'! This last couple of weeks I've felt better. Funny, when you are really fatigued, you know it! When you feel okay you don't think about it!!??
This is a roller coaster ride of emotions, physical limitations (for me not being able to keep playing golf is the big one), and general 'not well' feeling. I think all my meds are finally working.Knock on wood! Lynda
i havent had a good day yet. i have been on mtx for several months and no better, actually i am feeling worse. i cant get off prednisone, i have slowley increased my ultram(tramadal). tuesday i recieve my enbrel, i am hoping for a mirical!!!!! I cannot rememember a morning of feeling good. i wake up everyday stiff,and fatiuged. i have to shower before bed, because it wears me out too much in the morning to take one before work. I sure hope others that have been on there meds for a while dont feel like this on a daily basis.
kel
Lately I have about 3 good days. As my week wears on and my MTX wears off I get worse with every passing day until my next dose of MTX. I go back to the doctor JUly 16th and we'll need to make some changes as far as my meds go. I've been at this long enough to know my medication is not adjusted right.
When it is I have more good days than bad.
What do you guys consider a good day? I don't believe I have any, not for about 3 years. I wake up tired, even after being in bed at least 10 hours, usually more. I am stiff and sore and tired, by the time I shower and get dressed, I really need to go back to bed. I take 40mgs of oxycontin, along with a handful of other pills and drive my 30 minute commute. By the time I get to work, it takes me a good 5 minutes to get out of the car. By lunch, I am so sore, I can't turn my head more than about 30 degrees, my hands and feet are so swollen and painful I just want to scream. My hips and knees hurt so much I can barely walk. Its all I can do to stay awake. The pain is constant and progressive. By time its time to go home, I have usually taken some more oxy and limp out to the car and try not to fall asleep driving home. I get home, wash up, put pjs on and sit in my chair with several ice bags. Hubby makes dinner and I am in bed usually by 8. I sleep all weekend. I have no life and I always hurt. Will it ever get better? This all sounds so familiar. I should have added that I too have pain everyday, it's when I can tolerate it that I consider it to be a good day. I really don't know how all of you with jobs manage. It just makes me tired to read about it and all of you that have children, how do you do it?A couple of months after I started Plaqenil when I was first diagnosed, it was awesome. Sometimes, I'd have this very minor ache in my wrists, but nothing to complain about. I also had only a few flares that required prednisone.
The last five months, though, I've had four really bad flares. The one month I didn't have a flare, I did have what I would consider bad aches in multiple joints.
Looks like all of you report on-going pain on a weekly basis. I'm curious. Is your pain a result from damage that already exists? If not, shouldn't we strive for clinical remission (no pain). Am I just being naive?
According to my rheumy, I AM in remission!!! My labs are relatively good, slightly elevated c-reactive protein and sed rate but nothing outrageous. I do show bone erosion's in my hands, feet and knees and a lot of soft tissue swelling on my xrays. I guess there is something else going on, like a polyrheumatica arthritis but they just can't figure it out for sure. I have been on prednisone for over a year and yet the swelling never, NEVER goes away. Some days its better than other but haven't been able to get my wedding ring on in years. I have an appt with the University of Michigan next month, hoping for better answers than. I don't ever expect to be totally pain free but I have to hope ti will get better than this.
I have 4 good days a week. 5 if I am lucky and take it easy. I never have a day that I am without pain but lately it is manageable. If we are going to have bad weather that drops my average of good days down. I can flare anywhere up to 48 hours in advance of a weather system moving thru my area.
I will never again have days like I did before the ra or before I got out of control with the ra last year. That was a hard realization to come to. I am thankful for any day I can manage my pain with nothing more than the prescribed morphine that I am weaning off of.
Normal days always contain some pain. They have since childhood. I actually get manic when there is little pain. Most days pain is annoying like a bra that digs in, shoes that are too small, it is not like surgery or a tooth ache. I manage ok for pain most of the time, since it is normal.
Fatigue is really what drags me down. I just can't get to the point where dragging is normal.
I have felt really good since last week Monday - new nsaid seems to work- except for the trots. Keep your fingers crossed for me. This is the most days in a row for at least 3 years!
Lat month I had 3 or 4 completely pain free days! Which I attribute to AP. But the last couple weeks have been pretty bad (relatively---my pain levels are always quite low). Could this be the 3 month herx?