I think I’m finally calm enough to write this post. I’ve been seething since my appointment with my shoulder surgeon to schedule my surgery.
I had been dealing with increasing pain and limitations in range of motion for approximately a year. Repeated imaging (X-rays and MRIs) did not show excessive amounts of arthritis damage but were also inconclusive about other causes. For lack of other options, steroid injections were prescribed (which didn’t work). If those didn’t provide improvement, then the only other option would be to replace the shoulder.
My surgeon is one of the best in his field and it’s common for him to conduct his patient visits with one or more fellows that are studying with him. (These are physicians who are furthering their specialties.) When I went in for my post-MRI, pre-surgery visit, one of these fellows came in to chat with me before the surgeon came in.
The first words out of his mouth were, “I see you have RA.”
I guess the good news is that he paid attention.
He went on to suggest that I might want to just treat my shoulder medically, i.e., via RA drugs, rather than surgically.
I don’t normally speak to medical professionals like I did that doctor. I explained that I was treating my RA medically under the guidance of one of the best rheumatologists in the region using a cocktail of sophisticated and advanced drugs combined with exercise and diet. This was not RA. I know what it feels like when it’s an RA flare, and this was not it.
Then the surgeon came in and I went through that explanation a second time. He finally agreed that we would go in with the scope to determine if there were something not showing up on the imaging studies and to see if there were some corrective/cleanup actions that could improve the situation.
If you have been following my blog, you know they found a severe rotator cuff tear which had been apparently getting worse over time. What really infuriates me is that last friggin’ October I told them I thought I had re-torn my rotator cuff and I had been living with the situation for a full year trying to convince them that something was wrong.
On one hand, I’m glad I have a conservative surgeon who doesn’t just jump into unnecessary surgery to collect insurance fees. On the other hand, I feel like that if I didn’t have RA, my complaints would have been taken more seriously earlier on and I would have been saved months of pain, sleepless nights, and limited motion.
Okay. So now I’m mad all over again.
I guess the point of this post is that so many of us search, sometimes for years, for a diagnosis which means that we can find a treatment plan and perhaps even remission. However, it apparently can put us in a pigeonhole in the eyes of some healthcare providers: “It hurts, so it must be her RA. There’s nothing else to be done.” The truth is, we are people and prone to the same injuries and illnesses as anyone else — perhaps even more so due to our disease and the associated treatment.
We as patients must make it incumbent upon our healthcare providers to see us as whole patients. It takes work and perseverance, but you are the patient and are therefore the only one who knows how you feel. In order to get the appropriate treatment, you must be able to make your healthcare provider understand that.
Thanks for letting me rant, and thanks for checking in.
Carla what a great post and so true! We do at times get so caught up in the RA tag we forget to attend to ourselves as whole beings. great post! Good luck with your shoulder and I hope you get some well deserved relief soon. Nan
Over the last couple of years the biggest medical problems I’ve had have been caused by my pets–both my dog and my cat have bitten me. Both times I’ve been given excellent care, but in my case, Carla, telling my doctors that I have RA and am taking immune suppressing drugs have only intensified their concern and care, rather than the reverse. I can absolutely understand, though, your anger in having your doctors minimize your pain because you have RA, deciding without merit that this new pain must be just more of the same. And you’re right–it’s vital that we as patients make sure our doctors are doing everything they can. The trouble is getting them to DO that, as you’ve experienced.
Still thinking of you and sending as much comfort as I can your way.
It’s always interesting to me when a specialist in a non-rheumy area all of a sudden acts like they know all about RA and want to suggest treatments. My orthoped, although an excellent surgeon, tries to do this at times. Patients know their bodies and treatments best.
Ooh how frustrating for you! I’m not surprised you’re fuming!
It’s a very important point you’ve made – I tend to do the opposite and assume everything is RA or RA-related when it isn’t – either way round is dangerous, but finding the balance is obviously quite tricky.
All my adult life for both myself and my children I did the waiting game/conservative treatment bit where appropriate. It infuriated me when I then got a “why don’t we wait and see/try this” from someone who couldn’t be bothered to read the notes or believe my description of the clinical history. The final straw was when a jumped up little house-officer (2nd year post finals) wrote “hysterical mother” and claimed my daughter wasn’t guarding for abdominal pain. His boss called him in as part of a “grand round” to use her as a teaching object not an hour later – they removed a few litres of fluid at laparoscopy the next day. It was the early stages of endometriosis we assume.
I feel for you Carla! Hope the shoulder is improving!
Sorry if I am hijacking this post, but I have a question for you (and your commenters) who have traveled this path longer that I have… And been so generous in sharing your thoughts and experiences… I’ll use your “what do I do since I can’t work” post as my thin cover for being rude.
I’m a year down this road. And the 20mg MTX regime has brought me significant improvement ( 75% if I have to quantify) . Of course it’s also kicked my butt, but
4-5 days a week I’m really pretty good. I know from the other days that this isn’t remission, I can feel new joints getting into the game…and the original problem joints( fingers, toes, shoulder) are crunchy and weak.
So, my question is, is this victory? Time to escalate to a biologic? I honestly don’t know how to answer the Rheumy question (how are you doing). The slope of the curve is vastly improved, but still, slowly pointing down.
Compared to horror stories, I’m fine. I function. (Actually I work my butt off) I’m slower, but I’m also older. If this is the new reality, I can deal with it. Otherwise, I’m up for the fight.
I’m posting this looking for your perspective(s) and insight if you have the time…
Back to my manners, I hope you are feeling better and all your slopes are up and to the right!
Feel free to hijack my blog any time. That’s what it’s all about. I find that the sharing of information between those of us with the disease is so empowering.
When I was first diagnosed with RA four years ago I was on 35 mg of MTX once a week. I’d take it Friday evening and it wouldn’t be until Saturday afternoon/evening before I felt like I was human again. I hated it. I don’t know that it helped much. I had to go off of it almost immediately for hip replacement surgery and afterward I refused to go back on because of the side effects, so my rheumatologist switched me to my first biologic.
So what kind of advice do I have for you? It’s a difficult question because everyone’s journey is both different and personal.
The answer to your question is that yes, getting even some relief from MTX is a victory. It demonstrates that your body is responding to drug therapy. It does not seem like it’s a total victory (remission) or perhaps even as complete as it could be. I would suggest that you talk to your rheumatologist about either adding or changing your routine. They can increase the dosage. They can add various other drugs — either RA based (like Arava) or anti-inflammatory NSAIDs like Celebrex, that will enhance the MTX. Or they can either add a biologic or switch you to a biologic to see if you get better results.
I think the fact that you’re asking the question is very telling. You’re asking, “Is this all there is?” and the answer to that is no. There is more and it sounds like you need it. We want that slope to be up — at the very least flat. Yours isn’t and I think there is more that can be done to help you.
Good luck. Please check in with us and let us know how it goes. And again, feel free to “hijack” the blog. You’re always welcome.
I think we often pigeonhole ourselves and think everything is related to RA. :) I am glad you know your body well enough to know the differences between a flare from RA and something else. You have been through a lot recently Carla. I hope you get some relief soon.
I hope you have some relief soon. I get to the point where I am so tired of explaining things to every doctor I come across. Hang in there. Gentle hugs to you.