Does "well controlled" RA mean pain free? | Arthritis Information

 

Hi everyone,

I'm on Enbrel now and the max dose of mtx. My pain is much improved and my RD is thrilled with the reduction of swelling and stiffness. But... I'm not pain free. Though not horrible, I still ache. I still get more tired than I used to and I still run the occasional fever. Is pain free a reasonable state to hope for, or is it just a distant memory? For some reason I thought that well controlled=no pain.

I also have OA in my knees and they hurt every day. While everyone agrees I will need new knees, no one seems to want to give them to me. Apparently I am still too young and too mobile. I've had lots of cortisone and synvisc injections, which do provide some relief. I guess I just have to wait until things get MUCH worse before I can hope for any break from the knee pain.

Are any of you ever pain free? Those of you who aren't, please let me know how you make peace with the pain.
Thanks, LeilaI certainly can't say I'm pain-free, but I've made the distinction between pain that I "can't stand any more" (needing some pain reliever) and pain that I "can live with".  Once the mtx kicked in,  nearly all my pain in the last three years was the kind I could live with.  (I hate taking anything for pain, and all I've ever taken is ibuprofen.)  I stopped the mtx a few weeks ago and I've given in and taken ibuprofen twice.  But the pain hasn't been in my wrists and hands, where I had the intense pain when first diagnosed.  I'm surprised that the real pain I'm having now is in my lower back and right leg bones.  Confusing.  Gee I don't know but I was hoping if I added a biologic I would be pain free. I was hoping I would no longer feel tired. I mean my pain is not horrible either but I am always comparing it to onset pain which was horrific. I'm tired of not feeling well everyday even though I have adjusted to having pain and stiffness on a daily basis. It will be interesting to see what everyone has to say. I'm nearly three years in and have had three months where I had no pain, stiffness or any sign of RA.
I was feeling so good that I tried returning to my trade, within two weeks I was back to feeling it here and there and sometimes everywhere.
Like most, I compare my levels of pain and so forth to when I came down with this disease.
Except on the odd occasion my levels are at a manageable level without having to resort to pain meds.

Edit: My bloods are in the good range of normal but I still feel it every day.
Funny, when I had those three good months my bloods were showing elevated, go figure.
Bodak2009-09-10 16:13:02pain will still exist where you have joint damage.  Have you tried cortisone or other injections for the knees.  If so then its time to find another ortho surgeon as the only thing left is replacement despite your age  I had mine done at 36/37 yrs oldi'm not sure that once we get one of these lovely diseases that we can truly be "pain-free" - good days, maybe, but pain-free? Buckeye....yes I've done multiple cortisone injections and synvisc. I had knee surgery 2 years ago for what they thought was a torn miniscus. Instead they found a "moderate" amount of degenerative joint disease including areas of exposed bone. My knees are certainly worse now than they were then. About a year ago I was dx'd with RA. I did not have the severe crippling onset. Just a gradual increase of pain, swelling, and stiffness, mostly in my hands and wrists, that became intolerable. Neither my RD nor my Orthopod wants to do a replacement now. I am still too mobile. I used to be an athlete though, so I see my current level of functioning as very basic. My doctors think I'm doing great, despite my 1000mg of naproxen and 2-3 vicodin a day. When your knees were replaced, what was your level of functioning?

WTB... I don't post often, but I lurk, and I've been following your biologic struggles. I would encourage you to try it. I didn't really believe I had RA until I tried enbrel and felt SO much better. I'm wondering if some of my pain and fatigue is due to the fact that I returned to my regular life with gusto! I have 7 children between the ages of 18 and 3. We are busy! Is that what happened to you Bodak? Was returning to your regular level of activity what kicked your butt? I think that's why my RD is so happy with my progress... I have no swelling and I'm doing much more.

I tell myself that I am very lucky because so many people with RA are very disabled and I'm not. But then I go to a wedding and *gasp* dance a little, and spend the whole next day with a fever, eating vicodin like candy. I'm just so tired of being achey. I'm so tired of pain.

I wonder if I had jra as a kid. I had lots of "growing pains" and was even hospitalized for a week in 7th grade for hip pain. I tested negative for everything. Anyone else like this?

thanks for your input guys, I really appreciate it!
leilaI am nearly a year into diagnosis for RA. I haven't had a day without pain, but it's not agony. It's just wearying ache, sharp stabs when anything presses too hard on my fingers or feet, pretty much constant. I take relafen so I can sleep, but try to avoid the maximum amount. I go to the doc in a couple weeks and will ask to step up to the max dose of MTX, I'm almost there now. I guess what I'm saying is that I have resigned myself to the belief that I will always hurt to some extent, for the rest of my life.

I had my first experience with overdoing it when I played golf two days in a row and walked the course on one of them. Swollen feet and far more pain than usual, and it's been three days.The daily "pain" I have is from previously acquired joint damage so, at least in my case, well-controlled does not = pain free.

Have you spoken with your RD about the fatigue and increased pain after exertion? Perhaps adding another DMARD to your combination therapy would make a difference.

I tend to blame every ache and pain on RA but rationally I know that at least some of each are a tendency to overdo on the days I do feel good and stress my body in ways that cause it to creak and complain. I also have some joint damage from osteoarthritis and that also plays into the blame RA game as does the aging process.

I hope you find a resolution soonest. Shug
I'm usually pain free.  I'm not discomfort free.  If I sit too long it takes a bit to get moving well again, if I try to hold something a little to heavy I feel it in my wrists, if I have to use a tight grip I feel it in my fingers.  But the level of discomfort on most days is such that I would have ignored it before I was dx'd.bumping because my knees and wrists are killing me and because I don't feel like they should be with all the meds I'm on and its making me depressed...
Is there really any hope for my old normal life to return?I have finally stopped mourning my old normal life and have settled into my new normal life quite comfortably.

I can no longer walk the distances necessary to explore caves and certainly crawling on my knees and/or wriggling on my belly is out of the question. Now I visit "developed caves" and still marvel at the miracles nature has wrought. I can no longer safely dive, but I can lie in the hammock and watch the clouds race across the sky. I can no longer spend hours in the studio, but I can use small amounts of clay to hand-build small vessels, and am currently trying my hand at clay jewelry.

My new normal life is quite satisfactory and suits my small limitations nicely.

I am so sorry you are in so much pain, I think that many of us can empathize with pain that feels as if is killing us. Depression, at least from my experience, is a part of the grieving process and, at least sometimes, requires medical intervention of one kind or another.

Best wishes, Shug

are you taking anything for the pain?  what dose MTX are you on-max dose is variable and how long have you been on enbrelI believe all people who have damage due to arthritis eventually will get worse.  It is simply the fact that two irregular edges rub together for so long...they wear away.  I am 38 almost.  Have had a hip replacement after 10 years of pain.  It happens.  Try what they suggest  (the Doctors) and see what else worksfor you... Ice..massage..hot baths..MTX is good.

this is a comfort to read, in a weird sort of way...I feel pain almost every day, and fatigue is constant.  They type and place of pain is variable, and I am on Remicade and all my meds. Some days I think I am going crazy as it "should" be managed my my fistfull of pills, but it isn't.  I just can't understand how my blood work can be ok but somedays I can be a train wreck. I start to think I am making it worse in my head, and to "get over it" and jsut do what I have to, with poor results.  It is physical, it is real, and boy does it stink.  My rheumy has no other suggestions except gold shots, and I do not want to add another med to the long current list.  Good luck, everyone! 

I have had days where the pain is less, but gone? Not yet one day for me.I am hoping that is around the corner. Prednisone helps me a ton, but if I don't take it...watch out..it comes back like a flood, even with the Enbrel. I wish you luck and hope that you have MANY pain free days! I had pain on a daily basis until I tried Enbrel.  Now, almost all my days are pain free.Even at my best, before Enbrel pooped out on me, I was never pain free. I had some good days and some better days but even then I had pain.. I was happy just to have less of it..

I have pain every day. Some days it is just a twinge of pain, other days I feel like my joints have been hit by a board. I am also tired every day. If I didn't take the pred I know I would feel more tired. I type for a living so I take 2 Vicodin every day to keep the pain in my fingers at a dull roar. If it weren't for these meds my day at work would be hell.

Thanks for all the replies. Aropple, I'm also comforted by the fact that many of us are not pain free, despite the 'fistfulls' of meds we take everyday.
Buckeye, I take 1000mg naproxen daily, 25mg mtx weekly, 50mg enbrel weekly (for the last 5-6mos), and 2-5 vicodin (5/500) daily. My blood tests look good, which frustrates me even more. Why do I feel so crappy?
Shug, I am glad you have arrived at a peaceful place in your life. I know you have quite a lot on your plate health wise, and I'm sure your positive attitude is serving you well. I'm not there yet. Not too long ago I was an athletic mother of 7 children. I still have 7 children (ages 17 to 3), but now I'm their limited, chronically ill mother. It seems that everyday I discover that something else has be come difficult and /or painful for me. Its really heart breaking not to be able to pick up your baby when she cries.
I hope one day to have your fabulous attitude, I'm just not there yet.
thanks everyone for your support,
leila

The physical pain of RA is mild compared to the mental anguish it inflicts. Depression is very common with RA. One Dr who was only half joking said a dx of RA should come with a script for an anti depressent. Tell your Dr what you are feeling and ask for help. Also joining a support group can be very helpful. Ditto to Marian. I have often said the emotional stuff is worse than the pain. You know what's weird too? When I was at my worst I was able to be more accepting of my limitations then I am now. I was grateful for any little thing I could accomplish but now I am irritated at what I can't do or how I don't feel well.I see most posters agree with the main just of this thread..."My blood tests look good, which frustrates me even more. Why do I feel so crappy?

Well I feel better knowing that I am not alone.  I just got the results from my Dr today.  My blood works shows the meds are working fine (same as for the past year), no inflamation,  but I have been having extreme pain in my rt arm and over all aches in my neck, back & legs.  She is suggesting I try Lyrica as it may be Fibromyalgia.  I felt like saying, "But you said it was RA??"   I feel she doesn't even take my pain seriously because my hands and fingers aren't SWOLLEN.  Well thank goodness for small favors but believe me I am in PAIN.  I am looking for a new DR, she didn't even test my grip or anything.  Come to think of it, she didn't even touch me. 
Anyone know a good RA DR in Monmouth or Middlesex county NJ???

Pam
I have RA for 3 years and the damage is there in the knees everytime i stand up and walk but the rest of me is pretty much pain free now.  Get the heavy meds early before the swelling destroys yours joints. mine were destroyed in 2 yrs. the enbrel works, takes the edge off the extreme pain but the damage is what really hurts, not the swelling anymore.Hi All , My sed rate is 0 and I am hurting so bad! I dont think blood work can tell a physician everything and hopefully that is not all they go by. Pain is a daily occurrence..guaranteed to start bright and early until I finally fall asleep.  I have not been pain free in the last 18 months. My blood work is not as good as my doctor wants so that says to me my RA needs to be hit harder with stronger drugs. I see him in Oct and I am going to tell him I want the strongest drug possible so that maybe just maybe I can go into remission.

I feel like a drug addict when I keep asking for strong pain meds. I am embarrassed but at the same time I do feel like a cripple when I can't do things because my pain level is so high.

So with all this said, I could still have my pain even if my RA is controlled. So do I want to put my body through the stronger treatment only to still be in the same amount of pain or do I want to just go along for the ride as it is now. I don't ever think I will see the day that I will ever be pain free again. I am not looking at the negative, I am just looking at others that post here. I feel I am being realisitc.

So my answer to this question is no. ToBPainFreeAgain2009-09-21 07:23:35[QUOTE=seafire1]I see most posters agree with the main just of this thread..."My blood tests look good, which frustrates me even more. Why do I feel so crappy? 
......... My blood works shows the meds are working fine no inflamation,  but I have been having extreme pain in my rt arm and over all aches in my neck, back & legs.  She is suggesting I try Lyrica as it may be Fibromyalgia.  ..........