Thursday, December 22, 2011

SI = Sad Inside

Several months later, my right SI joint is still not a happy camper. I have to be honest: it is really starting to get to me. 

Since pain is certainly not foreign to my everyday life, I don't run to the doctor as soon as something starts hurting (or I'd be there constantly). I usually settle for stretching, taking it slow, taking some anti-inflammatory meds, and hoping it will go away. It's only after something bothers me for a good long while that I will give in and finally call the doctor. 

So, when my lower back started bothering me on the right side back in October, I didn't think too much of it. I did some gentle stretching, took some Tylenol (which is safe for my pregnancy), and tried to ignore it. Then I got distracted by the lump I found in my armpit (when it rains it pours?). In fact, the pain in my back didn't really start to worry me until my pilates instructor told me in November that she thought it was being caused by some inflammation in my SI joint. The thought of the pain being associated with a joint started to make me nervous.

But I still put off calling the doctor until my OB told me that I ought to check in with my rheumatologist. So I did. And then my rheumatology team prescribed some physical therapy in an attempt to deal with the problem without having to take any extra meds. Thus, for the pasts couple of weeks I have been seeing a physical therapist twice a week to learn stretches, posture, and exercises to lubricate the joint, as well as getting focused massage in that area to try to get the muscles around the angry joint to relax. 

Unfortunately, it really hasn't been helping that much. I'm not getting quite as much sharp pain as I was before, which is good, but I'm still dealing with a fairly large amount of dull, constant pain in my lower back on the right side. It hurts to stand. It hurts to sit. It hurts to lay. It hurts to carry. It hurts to lift. So most of the time I'm not exactly sure what to do with myself. My belly is finally starting to show, so I'm also starting to get a lot more nervous about the future. If I can't take the pain now, how will I deal with it when I've got extra weight to support? But I've been diligent with my stretches, posture, and exercises and I was still optimistic that my physical therapist/massage team would have something up their sleeves to get me through.

Until yesterday.

Yesterday, my physical therapist essentially gave up on me. We talked about how I was diligently doing everything they had taught me but that it still wasn't really helping. And, it seemed to me, she just got overwhelmed. I got the distinct impression that my combination of problems - SI joint pain, RA, and pregnancy - was just too much for her to figure out. It felt like she just wasn't up to the challenge. Instead of offering me PT solutions, she told me that she thought it was time for me to speak to my rheumatologist about anti-inflammatory meds or getting an injection in the joint. She even offered to cancel my upcoming appointments until I had a chance to speak with my doctor.

Maybe she's right. Maybe it is time fore me to move on and consider other options. But I left physical therapy feeling pretty discouraged about how she had basically washed her hands of my problem. I mean, I realize I have a complicated set of issues. I know that sometimes stuff is going to hurt no matter what I do because of the RA. I understand that being pregnant makes me difficult to treat because I can't do everything you want me to. But I just felt so discouraged that she didn't have any more ideas.

I did call my rheumatologist and the nurse got back to me this morning. He's going to have me try taking 650mg of Tylenol every six hours for the next week to see if that helps. Unfortunately, this doesn't seem to be significantly more Tylenol than I have already been taking on my own to deal with the pain - so I am not super optimistic that it is going to solve the problem. The next step is to consider an injection to the joint, but my rheumatologist says he would prefer not to do so, so that makes me nervous too. 

I don't want to feel worried. I don't want to be stressed. It doesn't make me happy and I know it isn't good for the baby. But I can't help feeling a little overwhelmed by my inability to do anything at all about the pain in my back. And I'm starting to feel pretty scared that I have been working so hard for weeks to fix this problem but I haven't managed to make any headway. What on earth will I do as my belly grows?


~kelly marie~ said...

I am so sorry you are going through so much! I had PTs give up on me with my SI issues, too. I would find another that is willing to give it a better try! I just know someone is out there that can help you!

I hope you find some relief soon. I am sending happy and healthy thoughts your way, and lots of hugs, too!

PS. I had an SI joint injection, let me know if you have any questions!

~Mariah~ said...

KELLY MARIE: Any advice on how to find a good PT? I mean, you'd think they'd like a challenge - a chance to really problem solve and show their stuff! - but this doesn't seem to be the case. Though I'm honestly not sure how much longer I can spend searching for relief - as my belly gets bigger I'm going to need relief sooner. Did the SI injection help when you got it? Was it horrible to get?

~kelly marie~ said...

For a good PT - Find someone with a doctorate (USC or Duke is always good). Also, ask for someone that is used to pregnant women. There isn't a lot of focus on pregnancy in PT school but there are people who focus on it in clinic time. If a PT place doesn't have someone, ask for a referral to another place, all PTs usually know of each other in one area.
It is tough for PTs because if you are not "improving" insurance doesn't want to cover it. I think that creates a frustrating environment, but I worked at a place that had a "never give up" attitude. They exist!
The SI joint injection is super painful. I didn't have anesthesia or much numbing. I heard later that most people are given the twilight type anesthesia. You have to lay on your belly in a CT Scan, so I don't even see, regardless of the pain, how a pregnant woman could do it. (I did have mine 8 years ago, so maybe they have better technology now?) I got some relief from it, but not a lot. I'm not sure if it was worth it or not. It's hard to know because I was trying so many things at once!
My biggest relief came from acupuncture, actually! Have you ever tried that?

Mandy said...

What a bummer! I hated when people "give up" on me cause I'm too complicated. I

. I recently have had Los of back and hip issues- do you have a foam roller? I got good (hard and a bit painful) exercises that really helped. I was suppose to get an SI injection but they did mine more out outside of hip/butt to get my hips and back, it hurt just like any other big injection I've had - but was worth it.

I hate trying not to worry or stress about what's to come. Im thinking of you and your growing belly!! One day at a time!!

~Mariah~ said...

KELLY MARIE: Thanks for the advice. Too bad I have very little energy with which to implement it! ~;o( It seems to me that PTs are a lot better at dealing with injuries than with chronic conditions. They always seem so frustrated to hear that it's not "improving." ~;o( And as far as the SI injection, I have no idea how that will even work. My rheumy is hoping the upped dose of tylenol will do the trick. I have my doubts but I will just have to wait and see.

MANDY: I do actually have a foam roller - and we use it a lot at pilaties. It seems to help a little bit sometimes, but it obviously isn't "fixing" the problem. I hope your hips and back start feeling better soon too!! And you're right - one day at a time is the way to go. Thanks for reminding me. ~;o)

Mirela said...

Oh nooo...I hate to hear this hip pain of yours is still there. When is that well deserved REMISSION kicking in already? How frustrated you must feel. I'm sure you have tried everything already and I hate to be another one of those people giving 'advice' but have you thought about trying meditation exercises? I haven't tried it yet...keep saying that I I can't even guarantee that it helps. Some claim it teaches the brain how to block out the pain by focusing it in other directions. I wish I was there to give you a hug and to have a few crying sessions together. I've had these prolonged types of pain in one area that frustrated me so much that all I could do is have a few crying sessions for relief.

~kelly marie~ said...

Crossing my fingers that the tylenol does the trick!

~Mariah~ said...

MIRELA: Thanks so much for your support. I don't think the RA is necessarily causing the trouble with my SI joint - it's just that the pregnancy is making my options for dealing with it quite limited, you know? It has been frustrating, but I'm feeling much better today after pilates. I did take some meditation courses a while back ( and I do find that those techniques can help me deal with the frustration most of the time!!

KELLY MARIE: Tylenol is helping a tiny bit, but not significantly. Time to see what the other options are!

J said...

YOU NEED A NEW PT. I diagree with Kelly Marie that a "DPT" would be more appropriate than a PT with a Masters. My mother is a PT with "just" a Masters (all there was back in the day), and she treats the most insanely medically complex children you've ever seen. Seriously: no DPT would have half a clue about how to treat 99% of the kids she sees every day. "Doctors" are raining from the acedemic sky these days, for better or for worse, and it doesn't mean they are ANY more qualified. (END RANT)

I would recommend looking for a PT who is used to treating RA patients/more medically complex patients, and someone who also has a longer history of treating patients. You don't want some supposedly doctoral level PT who has zero experience treating medically complex patients. I will check with my mom about any resources she may know of in terms of finding a good PT in your area. Lots of PTs do treat chronic patients, but it sounds like you've been getting recommendations for those that would treat injuries, rather than chronic issues.

~Mariah~ said...

J: I fully agree that I need a new PT - and I'm sure that good people ready for a challenge are out there somewhere. The issue is more that I'm not sure I have the time and energy to track one down before the situation gets any worse. And so far I haven't really had any recommendations at all - I chose the first one off a list my rheumatologist's assistant gave me, but it was just a list of PT's in the area and I only picked them because they accepted my insurance. The frustrating part is that I DID talk to them about being a complex case in advance, and they said they can handle it. So it sounds like, no matter what they say, it's really a case of trial and error and I'm not sure how much time I have to go through that.