Day 1 Could My Knee Pain Be TMS?

Hello everyone,

I am a 34 year old woman, and I have come to this forum after 4 years of knee pain.

When it first began in my right knee, after a day of long hiking, it only showed up when I tried to run or cycle. I went to see an orthopedist after 2 months who diagnosed me with chondromalacia patella and suggested that I use RICE (rest-ice-elevation-compression). In the days following that visit my pain became much worse. He told me to only go up and down stairs leading with my good (left) knee and while stairs had previously been painless, I found within days of receiving this instruction that taking stairs in a normal way had become quite painful. I got an MRI done that revealed Grade II chondromalcia (softening and defects in the cartilage beneath the knee cap) - a later orthopedist evaluated the same image to show something more like Grade I. I began to feel a sharp pain in my right knee when I put on shoes or tried to lift my knee onto the gas pedal of the car.

The first PT I went to said I was not responding to treatment as expected (my knee remained very reactive and inflamed despite strengthening and conditioning). A second PT was able to help me improve things such that I could function pretty normally though I still felt knee pain when I danced or did certain kinds of squats and I could not run or play sports.

A year ago pain began in my left knee as well. I began seeing a highly specialized PT who only works with knee arthritis and chondromalcia who expressed confidence that she could see me through to a complete restoration in function. Her program involved carefully guarding against overload (meaning giving up hiking and dancing and many things that bought joy and meaning to my life) and careful tracking in a spreadsheet of how many steps I took a day and how many rounds of exercise I completed. It has required a lot of discipline, which has been hard and taxing. She told me not to stand for too long, and now standing which had never been a problem before is such an issue that it makes it hard for me to attend parties or museums or to do chores around my house. I used to get some mild pain when I danced, but now 10 minutes of dancing at a wedding leads to days of pain and mild swelling. A year later my PT has determined that her program does not seem to be working for me. "I cannot think of a reason why you should not recover from this, but we are seeing no evidence to the contrary." She suggests my progress may be impeded by my autoimmune disorder (Hashimoto's), but I have explored that angle (going gluten free, taking supplements, etc.) in the past with no perceived effect on my knee.

I am a psychotherapist currently training in Somatic Experiencing and another practitioner at my recent training recommended John Sarno's books to me. There are things that give me hope I could be suffering from TMS. For example, the instances in which activities (walking, standing, dancing) became much more painful after an expert told me they were bad for my knee (this had always been suspicious to me and I wondered how my anxiety was playing a role in things). When I first got the diagnosis of chondromalacia I was so anxious and freaked out - the idea that there was an irreversible defect in my body that might have been my fault (overuse etc.) was intolerably distressing. (I have always been unusually distressed about things like scars or stains). I am a perfectionist and a goodist. And my life on paper isn't that stressful but I always feel very overwhelmed. I feel very stuck moving forward in life between my disoraganization and ADHD on the one hand and my need to have things done to a very high standard on the other.

Reading about TMS, I feel hope at times, but also a lot of fear and dread. I am so afraid of trying something else to find that it doesn't work for me and running out of hope. And it is hard to accept a diagnosis I have given myself. I worry that to believe my issues aren't fundamentally driven by structural damage and to believe that there could be an expedient way back to a full life is simply wishful thinking. Because of course I would long to believe that! I have often struggled with faith and doubt.

I am grateful for resources like this program and this forum! It offers hope to hear about other's success, and it feels a little less lonely to witness other people on this journey with pain (at whatever point they may be).