PT & Me
In the seven years since I was diagnosed with rheumatoid arthritis, I have seen a variety of physical therapists for a variety of reasons. The first time was back when I was still a law student, after a rather violent episode of patellar subluxation. Basically my kneecap decided it would be a good idea to pop out of the socket and then back in again, which was extremely painful. While patellar subluxation can randomly happen to anyone, my doctor told me that people with RA are slightly more prone to it because recurrent swelling in the knee can make the muscles that hold the kneecap in place weaker. So I was sent to physical therapy to help strengthen my knee.
The second time I went to physical therapy was while I was pregnant with my first son. Shortly after my wedding I went through a period of intense hip pain, which needless to say was not at all helpful in the process of trying to get pregnant in the first place. I took a rather large amount of medication and we finally managed to conceive our son, but of course once I was pregnant I couldn’t take the medications anymore. So I saw multiple physical therapists during my pregnancy to attempt to deal with my hip pain as my belly grew bigger and bigger.
Then, just recently, I started experiencing rather severe pain in my neck. For a couple of weeks I tried medication and heat and my husband diligently tried to massage the pain away. But all of a sudden one day I had the unpleasant realization that there are actually joints in my neck, and maybe my pain was part of my RA acting up. So I emailed my rheumatologist and he said, before I come in to see him, he would like me to try some physical therapy. So recently I've seen a couple of physical therapists about my neck pain.
Each of these instances took place for a different problem, in a different clinic, with different physical therapists, and yet there have been a lot of similarities across all of my experiences. Unfortunately, these similarities have not been great.
It usually starts with an all too familiar form – the one with the diagram of the human body where you are supposed to “mark the appropriate area to show the location of your symptoms.” I always have to resist the urge to circle the entire person, because the truth of the matter is that when I flare it feels like my entire body hurts! But I try to stick to circling the particular issue that caused me to get sent to physical therapy in the first place.
Then there’s always a pain scale where “0 is no pain and 10 is the worst pain.” I hate pain scales. In my experience, if you mark a low number they won’t take you seriously. But if you mark a high number and you are the least bit cheerful, they also won’t take you seriously. So I always struggle with what number to mark and how to behave afterwards.
Physical therapy forms also tend to want to know what makes your pain better, and what makes your pain worse. Nothing? Everything? I’m here because I don’t know what to do next? I ordinarily spend so much time and effort trying to ignore my pain that answering questions that require me to specifically focus on my pain is quite difficult. But I always try to do my best to be honest, because I know we have to start somewhere.
After getting past the paperwork, my experiences with physical therapy have usually started out optimistically. Between the therapist’s hands-on treatment techniques, TENS unit, ultrasound, infrared, and heat pads I usually do experience some relief in the first couple of appointments. The problem generally comes later – on appointment number four or five. It’s around this time that I feel the therapists expect to see some real improvement. But, as is the case with chronic issues, most of the time I haven’t improved. Sometimes I am actually worse. And I feel like the therapists don’t quite know what to do with me at that point.
It seems like they start throwing everything and the kitchen sink in my direction in the hopes that something will work. Have you tried dry needling? What about wearing a compression garment? Maybe some kinesio taping would help? Or primal reflux release technique? More time with the TENS unit? Come twice a week instead of once a week? Isometric exercises? Stretching exercises?
I know that these physical therapy techniques have done a world of good for some people. I also know that I won’t be able to tell whether or not they will help me unless I try them. But the guessing game, the constant questions about whether or not something is helping, being asked to focus on my pain when I would rather ignore it, and the impact of the appointments on my already overburdened schedule makes me feel overwhelmed. And I know that the therapists are good people and that they are trying to help me, but I am always left with the impression that they aren’t really equipped to help me stay optimistic while I spend a frustrating amount of time and effort without any improvement. I just don’t feel like they have enough experience dealing with chronic issues.
Have you ever done physical therapy? Do you have any advice for improving the experience?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?