Today I went to see my rheumatologist for the first time since February.
I told her that up until last week, I've been feeling progressively worse, and that the week before last had been the worst week since I'd been on heavy-duty meds and, in fact, I had been going to tell her that I thought the meds weren't working very well. But last week I had a really good week (figures! just before I go to the doctor!), so that's changed.
She checked me over and I have no inflammation.
My bloodwork's been fine.
Confirmation that I have Raynaud's disease – check.
She asked about infections – nope, none.
When I mentioned my drippy nose, she said, "Allergies."
I said, "No. I don't have allergies, and it only began when I started the Methotrexate and Enbrel and that was in the winter."
When I mentioned pain, she asked where, and I told her. I said I've been having more pain now overall than I had, other than right at the beginning. And I told her about getting back into exercising on a regular basis.
She said that the pain was from exercise and muscle soreness and getting back into it.
I said, "No. This pain is from RA. I know what exercise pain feels like and this is different. I'm on the elliptical, and first my left foot hurts, then my right foot, then my left knee starts, then my left elbow. It's pain because of the RA."
Not to mention I have the pain all the time and had it before I started exercising.
Surprising response from her, I think (although, in the interest of full disclosure, I hadn't said exactly when I started exercising and when – exactly – I started having the pain).
Don't get me wrong – I like my rheumatologist. She immediately launched an aggressive attack on my RA in term of meds, etc. She answers my questions. She responds to my e-mails. She renews my prescriptions without making me come in for an appointment.
I just think it's odd she thought my pain was the result of my renewed exercise.
Of course, the appointment was way too short, and I thought of all sorts of things I should have said after. Not things I wanted to cover off: I had all my questions, and we went over them all, and I got all those questions answered and got all the prescriptions I needed renewed. What I mean is things I thought of in response to the conversation. Things like, if the exercise is the cause of the pain and not the RA, what explains what happened the other night? It was the Thursday night of that bad week. I was just sitting at my dining table, not moving my feet at all, and I'd been there a while. All of a sudden, I felt a sharp pain in my left foot, so sharp I gasped out loud and then started crying.
That's not from exercise. That's from RA.
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Sometimes I think that rheumatologists (and perhaps other types of doctors, too) are so accustomed to dealing with people complaining of pain, and pain is so bloody subjective, that they grow callused about taking it (and us) seriously. And with RA, since there's no cure, and no med or combo of meds that work 100 percent of the time for all patients, maybe it's even harder to be compassionate after a while. Don't get me wrong -- I'm not making excuses for doctors who blow off their patients' pain -- but just trying to understand how it happens.
ReplyDeleteShe probably also told you that you haven't been on the meds long enough to give them a really good chance, too. It's one thing to be the doctor who sees numerous patients, day in and day out, all of them with pain of varying kinds and intensities, and all wanting relief, NOW. But it's another to be the person who hurts, to be the adult who's pain is so sharp and sudden that it startles her and brings her to tears.
I wish there was an easy answer for RA. I wish it was easier to accept and easier to treat. And I hope, Laurie, that the MTX and the Enbrel WILL start doing as advertised soon. I know your pain. It's heartbreaking.
Hugs for you. Sending calm and courage your way through the ether.
-Wren
Odd...it's like she's trying to talk you out of it. I know it's not related but it sounds like the things I get from pinched nerves. Don't get me started.
ReplyDeleteI agree with Wren, - they are so used to hearing about pain I think they just get used to it and think we should be used to it! I hope you start to feel better soon. I just started MTX 3 weeks ago cuz I am doing really poorly also. The Enbrel is not doing it for me anymore.
ReplyDeleteHugs and prayers!
Hey all!
ReplyDeleteI'm sure it's that some pain is expected, which I wouldn't have been surprised to hear her say, and I can deal with that, but let's call a spade a spade and not pass it off as something else is all I'm saying.
In any case, I have been feeling better this past week and a half, which is great! We'll hope it continues!! I which the same for you!
:) L
Congrats on feeling better! That is excellent news.
ReplyDeleteOnce when I explained my foot pain to my rheumatologist he said maybe my shoes were just old. I think he really just didn't want to touch my feet. :)
yeah, i am an avid exerciser and there is a HUGE difference between RA pain and exercise pain (especially from an elliptical...hello no/low impact!). my left ankle hurts even on the elliptical...and it is RA pain. the difference...i LIKE exercise pain. i HATE RA pain. easy!
ReplyDeleteHi Cathy! That is too funny!! Although before I went for my appointment, I actually thought to myself, I better wear shoes and socks rather than no-sock shoes, so my feet don't smell (not that they really do, but you know what I mean!), cause she's gonna want to touch them to check out my toe joints!! :)
ReplyDeleteHey Clare! It is totally different, isn't it?? I mean, I don't consider myself an athlete or anything, but I have been working out for years, and I know how my body feels when I've stopped for a while and get back into it, and when I've pulled a muscle, and when my muscles are sore, and when I'm tired, etc., and it is SO different. You just know and I know. So there (that's my 5-year-old self talking haha!).
Thanks for checking in!!
:) L
The below comment is from Gisela Peters – she tried posting it herself but can't for some reason, so she sent me it as a message on Facebook, and I asked her if I could put it up here, since I think she raises some interesting points.
ReplyDeleteDear Laurie,
I have been following your blog for some time, but for some reason, I cannot leave a comment. It works just fine on other RA blogs.
Maybe my rheumatologist's explanations can shed some light on your experience with pain during/after exercise.
I was diagnosed with RA (after a relatively slow onset) in June 09, and was started on 15 mg of MTX and a tapered regimen of Prednisone. Almost overnight, the excruciating RA pain subsided, and I went into clinical remission within three weeks of treatment -- until, in early March, I felt sharp pain in my left heel, especially when I stepped on it. Since the pain occurred after three days of heavy walking on uneven ground, I rested my foot and the pain subsided within two days. The rheumatologist (who is very thorough, matter-of-fact) answered my question whether the pain was mechanical or biochemical with "Good question", and proceeded to explain that there was no definitive answer. According to him, in RA the proteins are all lined up, ready to attack but are prevented from doing so by MTX. Any trauma will let them mount the attack. One of his patients - who had been doing well on her meds - experienced major flares after a full-body massage. So, my pain was PROBABLY RA-related. This explanation makes sense to me and to my son (BA in chemistry, Pharm.D (well, almost - he just completed his third year).
Wishing you well - and wishing I could comment on your blog,
Gisela Peters
Hi Gisela,
ReplyDeleteSorry you're having trouble commenting – what a drag!
Thank you so much for sharing this information.
In my case, I had been experiencing this pain even before I started exercising, and when I started exercising, I continued to experience the same kind of pain.
That's why I know it has to be RA related and not exercise induced (aside from the fact that it also feel different from any pain I've ever felt while exercising before, and I've been working out for years).
I think what you explain makes sense, though, in terms of why the pain varies so much from minute to minute, hour to hour and day to day (sometimes for what I thought was no discernible reason). I mean, who would have thought a massage could trigger pain?
Thanks so much for dropping by; I hope you do again and figure out how to resolve the commenting problem. If you can't, but really want to comment again, just send me another Facebook message, if you don't mind.
Take care of yourself!
:) Laurie
Agreed - I think rheumatologists become so used to hearing about pain. I also think it can throw them for a bit of a loop sometimes if we present without much inflammation and with good bloodwork (as I frequently do).
ReplyDeleteYou're right. That's not exercise - that's RA. We just know.
Hey Helen – thank you!
ReplyDelete:) L
Laurie, I just finished Andrew's blog (http://livingwithra.wordpress.com) and his post was also about his rheumatologist. It really does make you question whether some of them have our best interest in mind, or are we just an easy paycheck that they can rush in and out of their office. Yes, we all know the difference between RA pain and exercise pain ... that is all of us that have RA. That leaves most rheumatologists out.
ReplyDeleteI have had the same type of excruciating pain hit me while not doing anything before.
Hey, back again :-)
ReplyDeleteSorry to hear the pain is back. The treatment for ra,
(I NEVER give this, or any disease for that matter, the importance associated with capital letters . . . a small way but one nonetheless for keeping it down and in it's place!),
has improved dramatically over the many years I have had it, BUT still there is a long way to go and it is very hard to manage due to it's unpredictability. MTX for example is a releatively new treatment.
I think my specialist is trying his best to treat something he actually has no real experience of and so this immediately puts him at a disadvantage LUCKY HIM! This applies to many areas of medicine but that doesn't help me!
Aside. My bloods have rarely shown any disease activity and yet it is almost always there to some degree.
So many people have this disease, in varying degrees and with different different complications. Even my husband who lives alongside it day in day out doesn't fully get it and so I understand that my specialist doesn't either.
And re the pain; it is like someone breaking my bones and that is NOTHING like pain from exercising! Over time you will be able to manage your fitness as you will hear your body's response . . . always different depending on the day, month and time of year! Joy!
Good Luck :-)
Sue Nicholson x
I've got to ditto what everyone is saying about rheumatologists. I guess they just hear folks speaking about pain all day, and the human-ness it taken out? I don't know. But, it is doubly annoying to have your knowledge of your body doubted (ie. knowing the difference between RA pain and exercise pain. Glad to hear that she otherwise works well for you :) AND, I always dress very specifically when I am going to the doctor and know I have to remove any form of clothing :)
ReplyDeleteSorry to hear about the recent painful weeks. I know the frustration. I hope the meds are starting to work for you at all times. Your experience with the rheumatologist sounds so similar to mine it’s unbelievable. I’m already on my second rheumatologist and I conclude that I’m not much better off in that department…
ReplyDeleteI started exercising a few months ago too but beforehand I noticed an improvement in my body pain-wise (i.e. I started having a lot more good days than bad days…). I also believe that we can distinguish between pain caused by exercise vs. RA pain. In the beginning of my exercise regimen, I noticed that it would take a few days to recover from it (almost made me quit exercising a few times…glad I haven’t). Now I go to the gym every second day and I recover in a few hours. It’s hard to predict if and when that old and intense RA pain will hit again and what the cause will be but for now I need exercise. Just one note here…I tried exercising (because I was stubborn) during that painful stage of my flare and there was no way I could have continued. I really believe that you can’t exercise with inflamed joints and probably shouldn’t.
A note on Raynaud’s (since I have it too): drinking only one cup of coffee per day helped me (I drink green tea during the day now…has caffeine too as you might know). If you are not a coffee drinker then ignore my note. Moreover, I try to keep the hands and feet warm as much as possible. I also noticed that after exercising I have warmer extremities (maybe more circulation) and that helps with my Raynaud’s.
Hugs,
Mirela
Hi Sue! Luckily lately I've been feeling better. Let's hope it lasts! I think it's true what you say about someone who hasn't experienced RA not being able to understand what we're going through. That's why I count myself lucky re my neurologist – he gets migraines, so talking to him about migraines is great because he totally understands!
ReplyDeleteHey Pony! I hear you on the outfit front! And the pain front. Someone was asking me if RA pain felt like menstrual cramps, and I think maybe to a certain extent that's a good way to describe it, because many women, at least, will understand that – RA aches are like having cramps in many parts of your body, all at once, or at varying times, plus toss in some sharp intermittent pains to boot! :) L
Hi Mirela, The exercise seems to be working for me as I've been feeling somewhat better lately (fingers crossed!). Although who really knows what that's attributable to??? RA, it's a mystery! And re the Raynauds' tip, I'm not a coffee drinker, but I'll try the tea thing – thanks!!
:) L
I know this is an old post, but I recently was dx with aggressive RA and my Rheumy just told me I have no swelling (not true, he discounted both bakers cysts bc it wasn't on the outside of the joints, and there is other swelling he didn't notice) and so I should have no pain. I do have a lot of pain though...sharp, sudden, achy, burning, gnawing, etc. Even with minimal swelling. The Rheumy said pain is from swelling. Have you found this to be true?
ReplyDeleteI'm afraid I can't really help you. I have had pain such as you describe, and my rheumatologist also said she didn't think it was from the RA since it was well controlled.
ReplyDeleteHowever, once more x-rays were done, it did turn out I was getting erosions, despite the fact that we thought the biologic I was on was working so well (no swelling!), so perhaps that was the cause of my pain??
I do want to clarify the pain/no swelling situation with her at some point but haven't yet had the time. I'll try to post what she says when I do.
Luckily, though, she has been aggressive with my treatment overall and quick to respond to problems, and I am feeling really well these days on the new biologic I'm on (Actemra).
I do hope the same for you and wish I could be more help.
Best of luck and I hope you start feeling better soon!
:) L
That is very interesting about bone erosion when ra was in remission! I have seen a lot of people post about no swelling but still having pain, but the rheumies don't seem to buy it. That makes sense though, and I wonder if they will come to understand the why's soon! I am glad you are feeling better and your doc was quick to treat you. I start Humira on Monday and I'm hopeful it does the trick. It was just very hard to be told I was making up the pain, by the very person who is supposed to help me. There are not a lot of options up here in Maine for Rheumatologists, so I am doing a lot of research and trying to get other peoples experience so I can be knowledgable and ask good questions when I go, and try to work it out with him. Thank you so much for getting back to me!
ReplyDeleteHope the Humira works. And good for you doing your research and asking questions — I think that's really key to getting the best treatment possible.
ReplyDeleteAll the best to you!
:) L