Day 4 My disheartening 5-year saga with physical therapy

I think I’ve seen 5 physical therapists over the course of the last 5 years or so and most of them have given me negative, disheartening messages and left me feeling worse instead of better.

I went to my first physical therapist trying to be proactive and preventative about my body. I’d experienced at least a few painful “frozen neck” muscle spasms and minor but lingering neck pain over the past year or so (which I attributed to my work environment). In an effort to get out of a very negative work situation, I accepted a transfer to a different department, but where I was expected to do significantly more heavy lifting and repetitive motion in general - so much so that I was worried about whether I would be able to handle it physically, and therefore decided to proactively see a physical therapist to see what I could do to maybe prevent future issues. Classic “What Not To Do When You Have TMS 101” but I just didn’t know any better at the time. Well, PT #1 told me I have mild scoliosis and bad posture and one leg is slightly longer than the other and a few other minor abnormalities, but the thing I remember most was, after I’d explained my new work requirements, when she said, in a shocked tone, “What? You’re so small and you have such a tiny frame and they expect you to do all that heavy lifting? That’s just irresponsible! It seems like an injury just waiting to happen!” All of that just made me even more fearful and worried about causing myself more pain, and you guessed it - I started to not only have the same old occasional neck pains and spasms, but all of a sudden I started to also get pain in my shoulder and back. Surprise surprise. She was well-intentioned but in hindsight, she just gave me a self-fulfilling prophecy.

The second physical therapist I made an appointment with when I had yet another neck spasm, but by the time the appointment rolled around, the pain and spasm had subsided. He basically told me that if I was no longer in pain, he didn’t like to mess with the neck, gave me one or two super basic common-sense stretches to do, and sent me on my way. I just felt like it was a waste of time and money, a little bit belittling, and not in the least helpful.

The third physical therapist was mostly fine - she attributed all of my issues to a muscular imbalance in my shoulder due to an injury a couple of years back, but she only gave 20-minute appointments and talked a mile a minute while she rushed through her diagnosis and prescribed exercises. I didn’t really take issue with anything she said, but I found her ridiculously fast-paced appointments to be stressful and they just left me feeling more frazzled than anything.

PT #4 is the one I saw the longest, even though I really didn’t improve much from (and often was set back by) the actual physical therapy. My biggest issue was that his clinic insisted on at least 2 sessions a week, and between those sessions and my very physical job and the expectation that I do the prescribed exercises at home, it was all just too much physically, and everything felt worse and not better. Despite this, I couldn’t get them to agree to see me just once a week, so I kept inventing excuses to cancel appointments here and there to try to get a little relief. (I shouldn’t have had to do this!) Finally, after feeling forced to come in for an appointment I couldn’t cancel in time in complete tears because the last session just a couple of days ago had triggered another super painful neck spasm, he actually suggested that we shift gears in how we manage the pain. He said he didn’t have a lot of experience with it, but vaguely introduced me to the idea of doing some visualization-type exercises to help my brain uncouple some of the repetitive movements I was doing from causing the pain that he didn’t see an underlying structural issue for. He also recommended a textbook he’d had to read in school called Explain Pain, and while I never read it, these small suggestions caused me to start looking into the mindbody stuff a little bit more. Around the same time, I saw an Instagram ad pop up for the Curable app. (thanks, tracking algorithms for spying on me so well!) I signed up for that app after seeing all the amazing reviews, and that app is where I first heard of Dr. Sarno and started learning about the basic principles of TMS. I stopped seeing this PT shortly thereafter, but I have so much gratitude for him unintentionally introducing me to all of this!

I read a few books about TMS and did all of the educational exercises in the Curable app, and things sort of improved for a while but the pain didn’t completely go away and I admit I sort of fell off the bandwagon. Then a year ago, just as the pandemic was ramping up and the panic shopping was starting (I work in a grocery store btw), I had the worst pain event of my life when I suddenly got all of the classic, acute symptoms of a herniated cervical disc and everything that went along with it. In order to not lose my job, because I literally could not work for at least a month, I had to get paperwork submitted from a doctor and I couldn’t get a hold of that doctor (because Covid) so I was forced to quickly find a physical therapist who could assess me and submit those forms. Which then meant I had to start regular physical therapy again (virtually this time, because again, Covid). Again, a lot of it just made the pain worse. PT #5 had a completely different diagnosis (thoracic outlet syndrome?) and she started off super compassionate and kind, but after a couple of months of not a whole lot of progress, her tone had been getting progressively less kind and more strict over the last few weeks, and she’d started almost guilting and blaming me for not doing enough PT on my own time. Then after a couple of weeks of cancelled appointments due to yet another flare-up (I couldn’t do physical therapy if I could barely get through the day in pain!), she sent me a kind of passive-aggressive email in which she told me I either needed to start coming into the clinic a couple of times a week (they had just opened back up and it was all totally Covid-safe, she swore) or I needed to up my virtual appointments to 3x a week. She even went so far as to say, “If we don’t start demonstrating progress in PT it is likely that your health insurance will end the coverage of your visits.” (I have NEVER had any such experience with my health insurance. It’s great insurance, it covered 80% of the cost of 45 PT visits each year and I KNOW she knew that.) This last PT was the one that emotionally hurt me the most, as I felt that not only had she given up on me, but she insinuated that I was causing my continued pain problems by not taking physical therapy seriously enough, her whole demeanor towards me really took a dive, and she simply didn’t listen to me or believe me when I told her I was in pain or needed to take it easier, all of which just left me feeling even worse. I never responded to that email and I never had another visit with her. Disheartened doesn’t even begin to cover it. I felt like they were struggling financially because of Covid and I was just dollar signs to them. I felt unheard, utterly dejected, blamed and shamed, completely rejected by the medical field, angry, and pretty hopeless overall. I vowed never to go to a physical therapist again (ironic, seeing as I’d once studied to become one, and my sister is now a PT) and I haven’t been back to a doctor since.

Anyway, it’s been heartening for me to read about how physical therapy does actually tend to make pain symptoms worse for people with TMS and it’s not just me and I’m not to blame for it simply because I’m too lazy or stubborn or unwilling to do the exercises. This makes a lot of sense intuitively, as the PT just put even MORE focus on my body, my muscles, my pain, my supposed conditions or diagnoses, and increased my overall fear and worries about it. There’s definitely still some residual anger and bitterness over my experiences with physical therapy, and I’m reluctant to do any of those infernal exercises they gave me (both anger and fear are still there with respect to those damn exercises), but I’m getting around to physically feeling better in other, more productive ways. I’m doing it my own way for once and listening to myself - and I’ve seen SO much more progress.

Props to anyone who read this saga all the way through! I hope it helps someone else. If nothing else, it feels good to get it out. <3


P.S. There are actually good physical therapists out there (my sister is one of them!) and I don't want to discourage anyone from seeing a PT if they do have a diagnosed physical or structural condition. But I would try to find one that is open-minded, listens to their patients, doesn't just push appointments on them to meet a quota, and has some experience with mind-body type conditions (or at the very least doesn't discount them). But if you're here on this forum, and if PT has only made things worse for you in the past, it's also really good evidence that you DON'T have a structural or physical condition at the root of your pain symptoms. (Just another thing for the evidence sheet!) I still don't know just how I'm going to get back to 100% physically quite yet, but I do think I can do it without traditional physical therapy.

 

Mags33: thanks for posting your story. Sounds like you are finding your way. I can relate to the whole PT saga, and focusing on/being obsessed with the exercises could for sure add to one's fixation with the problem and maybe make it worse, particularly if there is not truly a structural problem. What was the focus of your last PT experience - back or neck? But mainly I just wanted to say thanks for sharing and best regards from my part of the world, and hang in there. It WILL get better. Relaxation and calming techniques probably also are something that can benefit all of us, almost regardless of the problem.

 

I've had some very unhelpful physical therapy experiences, but my last experience was one I am grateful for, too.

He worked so persistently with me, following my always-changing pain. Finally, 6 months in, he was clearly frustrated! He said the pain had no consistent pattern, and gave me some reading, which eventually led me here. Having someone who was that patient and knowledgeable become frustrated with the unpredictability of my pain actually ended up being good proof for me that nothing is physically wrong. I know that I got really lucky with this Physical Therapist-- this definitely did not match my previous experiences.