...I have never been out of pain since my DX (and the months prior while trying to figure out what was wrong) this past Spring? The post on length of flares made me think of this.
So now I am wondering what what I am experiencing is exactly. I have had days and weeks of more, extremely more and some somewhat less (but never anywhere close to pain free days. Not even with all the pain killers.
So do you think this is one big long flare at this point or are the somewhat less painful days going to be the good as it get days of this disease. I HAVE had 2 to 3 week periods here and there where I was completely down and out - unable to get out of bed due to pain and fatigue. Haven't had a whole good week yet - good times have never lasted more than 1 to 2 days and still have required pain killers and have always started out with my standard 2 - 3 hours of morning stiffness.
Curious and confused...
Melly
Melly,
Yes I would consider that you are in a flare. I am hoping that the Remicade would relieve some of it. Is he(RD) going to raise your dose. I am on 500mg now. Is he going to give you more meds next infusion?
I wish I could have a couple of days a week that I was really pain free. I can handle getting up and having to massage or walk things out, but the constant pain that never lets up is what is getting me down.
Shelly,
Yes, my dosage will be increased on my next infusion which is 8 weeks from now. ARGHHHH
This constant pain thing for this long just doesn't seem reasonable. How the heck is someone supposed to deal with this?
I don't know honey...I wish I did cause I could use some coping skills.
Hubby says it is cause I am not positive enough.. Well, I could tell him what I am Positive about! j/k
Shouldn't your third dose be in two weeks. Don't you have three loading doses??? I will have three loading doses two weeks apart and then I will be every four weeks(gotta love the psoriatic arthritis)
Are they treating the Fibro???
I FIRST GOT SICK 2 1/2 YRS AGO ALMOST AND HAVE TRIED SO MANY DRUGS AM WAITING FOR APPROVAL FROM INSURANCE FOR ORENCIA ANYWAYS I HAVE NEVER STOPPED FLARING MY PAIN IS ALL DAY MY TOES HAVE ALL SPREAD AND BENT AND MY FINGERS ARE STARTING TOO. I HAVE BEEN TO ER SO MANY TIMES FROM FLARING IN MY CHEST I THOUGHT IT WAS A HEART ATTACK. EVEN MY VOICBOX THE JOINT IN THAT IS AFFECTED CAUSING ME TO CHOKE AT NIGHT MY HIPS EVEN IN MY TENDONS. SO I HAVE BEEN FLARING THE WHOLE TIME . SO THERE IS NO TIME LIMIT MY DR SAYS ANYWHERE THERE IS A JOINT THERE CAN BE RA . TERESAha ha on what you are positive about w/ the hubby...
Interesting about the 3 loading doses. I sorta argued with my RD about that. I had 2 loading doses instead of 3 and seen on the internet/books where it should be as you had. But he insisted this was the way it was supposed to be. The nurses at the infusion center thought it was odd too. I had to lay off though because my Doc is really starting to dislike me for "knowing too much". such a fine line to have to walk when dealing w/ drs it seems.
I just started Lyrica for he Fibro about 3 weeks ago. It has started to make a difference...And he did a couple of trigger point injections but although they worked well at the time, it didn't last long at all.
Seems like the PA is far harder to treat/deal with than the RA even, correct? Like all the joint pain etc of RA PLUS the skin problems?
Oh Gosh Teresa, I may just have to stop complaining (not likely but worth a try) after hearing what you have going on. Especially with the whole chest and voicebox thing. The very thought makes me feel panicky. I hope you find some relief soon!You can flare for a really long time, although I consider that a flare that started a year ago for me one because prior to that I had had about nine months of improvement, not fabulous but definitely improvement.
Yes, Melly PA is a little more tricky to treat, and you have to be a little more aggressive. The damage from PA starts at the joints at the end of the fingers and moves to the base. Also it is more common for my tendons to hurniate...requiring surgery. By the time the damage gets to the base the fingers are usually worthless. I have damage like that(not too bad) on both hands and toes and if my feet and ankles do not stop I will probably have an MRI soon, and maybe some ankle surgery. Yes, probably the hardest is to have all of that and then the skin inflamation.
But there are a lot of people that have things a lot worse than myself. I try to keep positive.
My doctor will not even give me the option of not having the third loading dose, and my infusions will never get further apart than 6 weeks, but probably only four. I like Cordy was in a lot of pain before I pursued a dx. I tried a RD here in town about four yrs ago, and b/c I was not the typical RA or LUPUS he told me to come back when I was sick. WEll, that would be NOW.
Is it a flare when you can't open your mouth more than 1/2 inch? I can't eat anything chewy or anything big obviously, and if I do it hurts like heck
All my husband says is, "Well I guess I won't be getting any BJ's for a while." How totally inappropriate and insensitive
Oh well, I hope everyone feels somewhat better as the day goes on.
Gosh Suzy, that was inappropriate, and I am so sorry. I guess at this point with my frustration level being what it is and the pain being what it has been, I would tell hubby what he is NOT getting.
Sorry guys, but you can't expect your wife to love sex if you don't treat her as a beautiful creation!
I actually thought that was pretty funny. He was probably just trying to haveMelly,
I'm so sorry to hear about your pain. I too have had continuous pain since May 06. I have been on remicade (6 infusions) and have never been able to go more than 5 weeks so my doc has me on every 4 weeks. I thought this was never going to work but after my last infusion (8/9) I felt the best I have felt since I started getting sick! I am sooo excited that I am finally feeling a difference. I was due for another infusion last Friday but my insurance prevented me from getting it. I will get one on Monday and I can't wait because each day it becomes more and more difficult to walk and the pain and stiffness are much worse.
I don't know how long you have been on remicade but if it hasn't been that long.....keep it up I think you might really feel a difference, eventually. For the first time it even helped my energy level!
Good luck to you and I hope you get some relief. This RA stuff can be really depressing and constant pain can be so hard to live with.
HockeyMom27