I posted an update in my major rant posts that the neuro doc says that I most likely do not have neuropathy.
I am on my second rheumy doc and she says my disease is under control. My labs look good. However, I still have a LOT of visible swelling and a LOT of pain. The pain gets worse as the day progresses.
The rheumy says the swelling isn't from the RA and the neuro doc says its not neurological related. What else can it be? What would another rheumy do that my current one isn't? I am already on humira weekly, mtx injections and prednisone plus pain pills and a slew of other drugs.
My knees, hips, ankles, wrists, hands, feet the whole shebang still hurts. Who else would I see and what other treatment options would they do, especially since my blood work is ok. The increase dose of lycria seems to be helping a bit, maybe I just need to give that more time?
Hi Micheleb,
I had an emg done today on my hands but don't know the results yet. My rheumy took me off Lyrica because I only had one pain free day out of 7. And damn, my eating was out of control! I don't know what the heck was wrong with me but I think I gained 3 lbs. this week alone.
I'm getting tired of this whole thing. I do not understand why I'm still in the same amount of pain that I was a year ago. I just had my 3rd injection of Humira which I have every 2 weeks, and I'm on sulfasalazine as well. I'll see my pcp next week and I'm going to make sure he gives me something. Sorry I can't help you. I'm in pretty much the same situation.
When they say your "labs look good", what exactly are they referring to? If you have any swelling shouldn't it be reflected in the sed rate? I don't understand if you have pain with swelling in the joints AND any kind of positive RA factors that it isn't from RA???? Isn't one of the criteria for "remission" a noticable decrease in the amount of pain/stiffness? Regardless of labs?
The pain could be fibro, but the swelling wouldn't be. Can you get referrals to a pain specialist and an ortho? Might be worth a try...
Good luck..
Laura T
My rheumy told me blood work for RA is helpful but unnessesary for dx and can be misleading during treatment. I've had "OK" bloodwork while flaring like mad. You're still having alot of pain and swelling, it's totally unacceptable to me that you're rheumy sees this as "under control". It's delusional. You may be forced (by this dimwit) to seek yet another opinion. Is there a teaching hospital nearby?
Grrr My SED rate is always normal but I am obviously swollen. Go figure.
I went thru 3 rheumys and 2 PCP's before finding the team that I wanted and after 18 months nothing has helped yet but I have hope for Enbrel.
Another shot in the dark--
Is Humira the only biologic your rheumy has tried? Is it possible it's just not right for you? What about trying one of the others? Enbrel, Kineret, Remicade, Orencia.
All these posters are right. Lab tests are not the only indicator of RA. Lots of these folks are seronegative, and still have full-blown RA. Hate to say it, but you need to keep trying to find a team of doctors who know what they're talking about, and know how to listen to you.
Me and the girls went through my records last night, and from what I can tell, in all my 23 years I have NEEEVVEERRR tested for RA. Not even SED Rate. So yeah. Blows them tests outa the water, doesn't it?michele, I think the answer to your question is until you feel comfortable that you are getting the right answers. Both of those doctors could be wrong. That's why I keep banging my head so much.
I think you need another opinion from a different Rheumy. I just don't see anything mentioned on any of the sites about neuropathy causing swelling. I remember the pictures of your hands of the swelling. That was intense.
I would go for a second opinion. It is a pain but if you find that right doctor, it will be well worth it.
I keep hoping you and miles2go will finally get some relief.
laurat, I think your question is exactly where most Rheumys are having a major difference of opinion. You see it in post after post. Some doctors only want to look at the blood work and others are very good at looking at the whole picture.
Michele, Laurat suggestion of going to a pain specialist and ortho are very good. They will do films and assessments. For instance, my ortho says there is damage from the RA. A pain specialist will order more films and also make a referral to a rheumatologist or neurologist. Keep pursuing these avenues. You know you have something wrong. You need the right treatment for it.
Laura,
I posted a similar question about pain, inflammation, and ESR/CRP in anther forum. Someone replied and said that the ESR and CRP showed "systemic" inflammation only. If the inflammation was confined to the joint, it wouldn't reflect in these tests. I don't know, but it sounds logical.
Michele,
I hate it when doctors don't believe us. I usually really like my RD but last time I saw him, I couldn't hardly move my right arm because my shoulder was in so much pain and he said, "Well, you look fine." What? I thought are you even looking at me grimmacing in pain? Gee. He doesn't normally treat me like that so I'm hoping he just had a bad day. You can bet, though, if he treats me like that again, I'll definitely find another doctor.
Here are pictures of my hands
You can see the swelling is all over but mostly between the middle joint and my hand on every finger. My wrist are swollen as well. They get hot to the touch but not usually very red.
I asked the same thing that Laurat asked. How can I have this much visible swelling, my feet and knees don't look much better, and still have a normal CRP? My sed rate is down as well and I have never tested positive for RA or shown any ana either. The rheumy says my x-rays show classic ra changes in my feet, ankles, knees, hips, hands, fingers and wrists.
She said the swelling doesn't look like typical ra swelling. Apparently RA swelling is more right at the knuckle or particular joint. The neuro doc agreed that she doesn't think its neuro related either. Ok, than, what else could it be??
The lycria does seem to be helping to a point. The pain is reduced probably 30% but the swelling hasn't decreased at all. This swelling started 1.5 years ago and at the time, I was undergoing fertility treatments and they said it was just from the hormones, than I was pregnant with twins and it was just water retention, than I lost the twins and they said I was just depressed.......YEAH, I AM depressed but depression isn't going to cause this much swelling, or chronic uveitis or bone changes seen on x-rays!!!!!
I did try enbrel first and got just a little relief and since my eyes were still flaring she switched me to the humira and we added the mtx in October. I have stopped the placquneil and my previcid just trying to reduce some of the stuff I take. I would like to try to get pregnant but that's looking a bit unlikely at the moment.
The doctors do seem to believe I am hurting as my pulse is high and I shake and well, you can just tell I do not feel good. I have been given vicodin and norco to help with the pain but hoenstly, I want to know whats causing it or just make it go away. I don't want to go through the rest of my life drugged and not even know why!
I thought about this a while before I answered you....I don't think you can put a limit on it. I think we have to keep trying until we find one that makes sense to us or whose treatments produce happy results.
I've been with my current rhuemy over 5 years...he doesn't seem to hear me any more. My next appt will be my last if I can't get him to hear me. I like him enough to let him know that.
Maybe you just need to tell your rhuemy that a person is not in remission because their blood work looks good. You are in remission when you feel a whole lot better. (I don't think we ever feel as good as we did before RA - things get damaged -but that doesn't mean that you can't feel a whole lot better.)
However, I still think it is probably RA and that you are not getting enough treatment. But since it came up, I thought I'd pass it on.
Thanks girls. I do get my thyroid checked about every 6 months. I will ask when the last time it was checked at my next appt.
I realize I will never really feel normal again but its just go to get better than this. I guess I am just going to let things be until I have my emg next week. I see the rheumy in 3 or 4 weeks as well. Hopefully this lycria will start working better. I try to remain hopeful but I just feel so tired and run down. Like all the fight is gone.
I guess I am lucky in the fact that my Rhuemy Dr told me from the beginning that she will not tell me how my RA is doing by bloodwork. She said that it is just not an accurate thing to go by in detecting how your RA is doing. She goes by what I am telling her and what she physically see's and feels. I love her....