It sounds like a weird question, but how much pain do you typically have when you are not in a flare? I go to the RD Monday and am wondering if I need to push for a new med. I am very bad at night and in the mornings with pain in all but my knees, and then improve, but I still have pain in my wrists, hands and feet all day. Hate to ask for a new med, but I am tired of this too. Is there an "acceptable" level of pain with RA? Or do I need a new med?
I am fairly new to RA having been newly dx about 4 months or so ago. I always have some level of pain in my hands. I have learned to live my days on a 1-10 scale. I don't really think any level of pain is acceptable. My RD has said that if the pain was ever unbearable to call and she'd get me in right away. So far I am taking tylenol 650 for pain. There have been a few times when this really didn't help though and I would have liked something stronger.
I think that's up to the individual. I have frequent flares, so my Rd always asks me if I want to add a new med. So far the answer is no. I don't want to. I still have more good days than bad and I can handle things the way they are. But if my status changes and I find that my quality of life is suffering, especially if it were every single day, I will add that next drug (arava). I think if living through the day becomes a burden rather than a joy, it's time to make some changes. But you're the only one who can make that determination.I have pain in my wrists, hands, feet and ankles all day upon use only. Starting to get annoying.Most of the pain I experience when not flaring is the kind that requires some activity to trigger...it's not a constant throbbing...so I consider it acceptable. Usually my hands and shoulders are the biggest source of persistent pain of this type. I'm flaring now...ugh...hit my knees for the first time and they are very swollen. It's Humira day so hopefully the flare will end soon.
Sorry, never been without a flair, so i can't help :(It's been 11 years since I was diagnosed and I too thought that a certain level of pain was acceptable. Now, that I'm in clinical remission, I realize that there is no reason to accept pain. As long as there is pain, then damage is being done. The pain and damage may be acceptable when one is younger, but once you reach a certain age and have damage and deformities from accepting that certain level of pain, then it's too late to do much about it.
Search for remission and not an acceptable level of pain. Don't settle for less because if you do then damage is inevitable. You're RDs are offering different drugs to you for a reason- for you to achieve remission.
If you've had RA for a period of time then some pain may be from damage and may never go away. If you're flaring then you need to think about a change in dosage or drugs to achieve remission. I'm sitting here typing with crooked fingers, RA nodules on most finger, toes that are crooked, and ankle that is fusing, a decreased range of motion in both wrists, one total knee and waiting to have the other knee done, cardiac and pulmonary complications all because I accepted a certain level of pain and didn't think that remission was possible. I was in denial for 5 years and then for the last 5 years I've tried to reach remission and was successful; it takes a lot of experimenting with the drugs and dosage changes. If these drugs fail then I'll go on to the next and hope that I have the same results. Lindy
That was a great post, LinB, thanks--I read it a couple of times and will try to take it to heart.
I only used narcotics when I couldn't sleep at night. I haven't gotten out of this flare since last December. My wrist hurts with certain uses and there's a lot I just can't do with it. It usually doesn't hurt when at rest but sometimes it burns in places. My foot hurts when I walk, and my shoulder and elbow a lot of the time now. My mornings are bad for 2-3 hours. But I am in a flare so I don't know how helpful that is. Obviously my MTX still isn't working and I'm going to have to pursue other options soon. Was on the pills for 5 months, now the shots for a full month, and can't tell a change.
Lin your post will definitely make me keep trying things and not give up just because I'm not in severe pain!
Lindy,
Your post was honest and inspiring, clearly driven by your own personal experience, and I agree with most of it but...there is something I'm struggling with. You make it sound so black and white, remission or failure/giving up. Not everyone can achieve remission with the meds currently available, but I don't think they are doomed to permanent damage and a life of misery. Their disease can be controlled to prevent damage with an acceptable loss of function and some pain/discomfort. That is my current experience, so far x-rays don't show permanent damage but I'm certainly not in remission and do have flares, particularly near the end of my 2-week Humira cycle. If it gets worse I will certainly consider another med but it's difficult to give up something that works pretty well to try something you can only hope will work better...and there are limited options. I do agree strongly that as patients we should push for the most agressive treatment possible...for me that's a combo of Arava (DMARD) and Humira (Biologic) as quickly as possible to minimize damage as much as we can. But there's a lot of gray between the black and white extremes!
Alan
This has been very interesting and I appreciate your input. yYou have all given me things to think about. I am on immuran (150mg) and prednisone right now. I don't think immuran is used much for RA. My drs main concern was the vasculitis. After reading your posts, I think it is time to see if they can add something that will help more with the RA. The vasculitis is under control for the most part (I think).
They have talked about putting me on elavil, but I think that is more for fibro, which I am not dx for but everyone thinks I have it too. Didn't really want to do that since it causes a lot of weight gain. Well, I hope there will be some good discussion and then we can decide what to do. I think if I had less pain, I would be less tired too, which I need to factor in.
Laker
Alan, there's always the gray area. I was speaking from my own experience and was warning others that damage can occur and in many cases damage will occur if pain and inflammation aren't controlled, as in clinical remission.
I'm sure there are others like you that have pain but xrays and examinations show no damage. There are many others that are showing damage and aren't pursuing clinical remission because they've settled for a certain level of pain, have fear of the drugs, or just don't think they'll get better. My post was meant to try and inspire them to investigate and seek remission. There's always hope. Lindy
So LinB,........... its still hard to know what pain is normal, both my wrists are damaged and when I am not doing anything they are not painful, but as soon as I start putting pressure, rotating, cleaning Ha! or anything else, no matter how small, they get very painful, and I am continually saying ouch!, sometimes like knives stabbing at them, Is that damage pain? I know you have been over this time and time again, but I think its a question most of us newie's would like to ask. Now that you are in remission, but still have lots of damage how much pain do you have? do you do normal things like lifting or light or heavy cleaning, I feel like I can't do anything anymore and don't know if it should be better. Thanks, and any help is appreciated.
And yes LinB, you have, and do inspire me, even though I don't do many posts I always love to hear what everyone has to say, it answers a lot of my questions.Well... we all know I do not have controlled RA. And I accepted my pain. But then I got on pain meds and my pain is pretty dull now. Mine is from inflammation & damage. I am not totally sure which pain is damage pain until the inflammation is down or gone. My joints feel very different and have weirder pain and problems when inflammation is down. I have more pain upon moving certain body parts.
Remicade done good for my pain when I was on it. I had no need for pain meds, because the pain I had at that time was acceptable to me. Which I believe is damage pain and fibro and some RA.
Now that I know just how much less pain I can have is very inspiring and sad at the same time. Mostly because I cannot have what I know helps me, and because I know there is something that does help me.
I will find out soon whether I am black, white, or grey when I have x-rays in Oct, to see if all this pain has done real damages. My only other frame of reference is that I had pain about 10 years ago in my right foot, not of this magnitude, that was never dx (doctors puzzled) and in retrospect it was probably RA. Well RD did x-rays back last Oct, before my wrist was showing symptoms and when I was trying to decide whether to run again. I was seronegative and showing no inflammation at that time, so he thought (at the time) that i had no autoimmune/inflammatory issues. So when some erosion was present in my big toe joint, he said it was probably from playing soccer. Need to ask him, now that he has dx RA, whether he thinks that damage is ongoing...Only an examination, xrays and mris can tell if there is damage to your joints. If your doctor says your labs are normal and you're in clinical remission but you still have pain please request an xray or mri of the painful joint. As long as there is synovial inflammation, no matter how little, there's active disease and you aren't in clinical remission.
R Annie, the pain from damage is not as bad as the RA and PsA pain. I also have OA and it's difficult to differentiate between RA/PsA/OA/Damage. RA pain is gone, PsA pain is still with me but it more limited to the tendons and ligaments. The damage pain is more achy than anything except for my feet and the foot pain is sharp and with me most of the time.
Before clinical remission I couldn't open jars or cans; couldn't hold my coffee mug with one hand; no golfing; and unable to walk more than 100 feet without severe pain. Now I golf 9 holes and can open jars and cans. I'm back to silversmithing and designing jewelry and painting. My first long walk after remission was to the San Diego Zoo and I walked from 9:00 a.m. to 5:00 p.m. all over the zoo and then golfed the next day.
My life has changed dramatically since I went into remission and I know that some may feel that I'm preaching but I feel that it's really important that the new people on the forum read about someone who's in clinical remission. Our stories are sad and it's important to know that there can be relief, even after many years of searching. Lindy
I want to say that NO pain is acceptable.
LinB: My first long walk after remission was to the San Diego Zoo and I walked from 9:00 a.m. to 5:00 p.m. all over the zoo and then golfed the next day.
I want that.. and I won't quit til I get it back.. I am feeling better w/ some periods of more pain but they become less and less and that i can see it is definitely from over doing.. while I'm losing my confidence in enbrel.. it has got me this far.. and I can understand the fear of changing to another med... but, should we say: I take this or something better??
I think I will continue to try to find my remission... the black and the white of it.. gray seems to be out of focus to me.. and that I need concentrate more on the defined unblended colors in my attempts to find remission.
babs102008-08-25 10:59:27Very interesting discussion and one close to everyone's heart. We all ask ourselves this question. After 5 years I was wondering the same thing myself!! So it is not just for the newbies!! Thanks for everyone's input... especially Alan and LindB.I've been wondering to myself....do you really feel more pain now then you did with 12.5 mgs of prednisone? Or were you just more accepting of it in the earlier days after the horrific pain of onset and now you are frustrated by it?
It still does not make me reach for a pain reliever- although someone else might... I have some small limitations but for the most part I am carrying on life as normal...
I feel less pain now then when I was dx 3 years ago. I take a enbrel shot every Tuesday but by Sunday, I am sore again. Most of the time I take vicoden and the pain is still there but it makes it bearable and I am able to do things such as cooking, light cleaning etc. I still take many breaks and some days the enbrel is working but by the afternoon I'm in pain and take vicoden to make it through. Like today, I was in pain. Sleep in recliner most of the day but it's the day before my shot. By Thursday, I'll be a new person and go shopping or that's when I work at the church. By evening, I start hurting again by over doing it. It varies so much. I haven't had xrays since I was dx and that was just of feet and hands and I had damage in one toe and finger and thumb. I would like to know now what damage I have because I have had lots of other parts of my body affected. That's another reason why I fired my rd because he never did any xrays or a mri. I am on the hunt for a new one and that is the first thing I want to know. Where do I have damage?
Yep, this is the craziest disease and the different ways it affects everyone. There are no black/white/gray, it's many colors to this disease.
We all must be very careful not to blame every ache and pain on RA. How many of your non-RA friends and relatives have aches and pains? Pain is a part of life. I'm not saying it's normal and should be ignored... just the opposite. It's a warning signal - kinda like the town emergency siren. When it sounds, if you don't look outside or turn on the radio, you don't know if it's a tornado or a civil emergency. The great majority of the time, it's a tornado warning (at least here in Illinois!) but it does get activated for other reasons, and you should always keep that in the back of your mind.
Thanks LinB......it was very interesting reading and everyones else's posts as well...everyone is different. I met two sisters on Sunday, one had RA for twenty years and only on MX & celebrex, feels great, no damage, and drinks daily, the other only 3 years and crippled up with RA, what a difference, the good sister said she keeps a positive outlook and exercises daily while the other has had lots of stress and no exercise. We need to keep positive and have great friends on forums like this.I understand this topic is from August but it addresses much of what I am going through on a daily basis. I am on Lortabs(10) for pain and have to take 4-6 daily just to able to function. I go to Nashville on the 15th to see my rhuemy and I don't want to be made to feel like I am some addict wanting drugs.
From the people that posted in August, has your pain level changed for the good or bad? Does anyone have trouble getting pain meds to take on a regular basis just to able to work?
I have never had pain like I am having and have had since January. I just don't want to live the rest of my life like this-it is just not fair. As for the other meds I take they are:
Embrel, MTX, fol acid, pred, ultram 300, trazadone, celexa, lasix, hctz neurontin
How much pain do you really think you will have to be in the rest of your life?
To B- I'm no doctor and I can't speak for everyone but my feeling is- if you need prescription pain medication on a daily basis your RA is not under a reasonable level of control. You need DMARD changes. There are a select few who do not get resolution using DMARDS but the vast majority do. Please ask your doctor what they think they can change so that you do not have to rely of prescription pain meds to be comfortable.
How are your blood tests? Do they show high disease activity?
TBPFA,
Wannabe is right on. Pain pills are of no real benifit. What pain they may mask, they are allowing damage. It's time to change the coctail that you are on. I would make sure that the rheumy addresses the problem and ensure that until the pain is managed, you have an appointment every month for close monitering. Good luck. For flares I prefer to raise the prednosone that to up the pain meds. Just my preference.
LEV
Thank you wannabe and Lev for your suggestions and insight. I hate being on pain meds but I can not move without them. I started Enbrel in April and Dr. did not want to see me again until I had been on it for three months. As far as my blood test results, I know my WBC is out of control but he has never said anything about the rest of them. I do know I have never tested positive for RA. I have been keeping a journal that I am going to take to him and my 3 most important questions I want answered written down. Thank you once again for response.To B- it's time To B looking for a new RD! That is unacceptable that you are in this kind of pain and you are not being monitored more closely. When I was uncontrolled I saw my RD sometimes a couple times a week, when it was very bad and then weekly and then every two weeks until I was comfortable.
To B, I agree with Lev and WTB, if your pain is not controlled chances are, neither is your RA. You said you were on Enbrel, what else are you taking? You may want to check out the Combination Therapy thread, some take three DMARDS in addition to biologics. Humira is a bit stronger than Enbrel, I was told, so maybe ask for a change?