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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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Ivette
    5 years ago

    You nailed what I’m feeling. I’m recently diagnosed (though the pain has been occurring on and off for 3 years) and this is what I went through almost word for word for years. So many doctors and therapists all trying to help with the inflammation and pain, and looking at me earnestly, hoping I’d tell them that the problem had been solved. In fact, there were times when I’d feel guilty for not feeling better. I even faked it once. *sigh. I mean, faking it for your doctor is like a new level, right? Lol. I will say that the chiro has helped, though it doesn’t last long. But when I’m in agony in my lower back, he at least keeps me from losing my sanity.
    On a serious note, I really do hope that you’re able to find some relief, or find practitioners who can deal with all the facets of what you experience. It’s awful to feel like you’re on the verge of losing hope.

  • jan curtice
    5 years ago

    I hope you find a therapist who can help you. I’ve been going to physical therapy off & on for 18 years … more on than off. This has been a key component of helping me manage my pain and keep active. Here are some things I look for in a therapist, hope it helps: 1. How flexible are they with my physical needs. Are they willing to adjust the day’s schedule therapy to what my body is able to handle THAT day? Sometimes all I can manage is just getting in the pool with the jets on. 2. What kind of training (not just experience) do they have working with rheumatoid diseases. There is a HUGE difference between a therapy program developed for arthritis and an ortho-adapted program for arthritis (which is what usually happens). 3. Do they offer pain management. If so, what kind? If I’m having a day with high pain levels, are they flexible enough to provide pain management instead of therapy. What I find works best for me is the wax bath, hand massage, heat packs, and recently I’ve started massage/pain management for my migraines. 4. How much communication is there between my rheumatologist and PT. I want there to be a team approach. Here is where I go to therapy if you want more information

  • Carla Kienast
    5 years ago

    Mariah: First I hope you get some relief from the neck pain. But isn’t it the worst when healthcare providers use cookie cutter methodology and then expect predictable results from someone with a chronic disease. Even though it’s on the form (which some of them don’t bother to read), I make it a point to start out telling them that the issue may be related to RA and that, while I am a good patient and will do what I’m instructed, the results may not be what they expect. PT laws differ from state to state, but in Texas I can fill a PT prescription from any licensed practitioner. After some hazardous missteps, I’ve found a therapist I like and who understands the unpredictability of RA, so that has been a major blessing. Hope this passes quickly.

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