Osteoarthritis is merciless. It doesn’t kill you, but it has totally destroyed my way of life and my relationships with others.
I am a retired senior. For the last 15 years of my career I was a writer, copy editor, and proofreader in healthcare communications. Much of my work was on promotional/CME materials to physicians and allied health professionals on pharmaceutical use. I didn’t work on OA, but I did work on Enbrel® for RA and PSa, and Orencia® for RA, as well as pain management, including the then new COX-2 inhibitors (Vioxx® having been pulled since then). I have a better understanding of inflammation and disease than the average person.
As a teenager I suffered with back spasms. I don’t recall taking MRIs, but I assume X-rays were taken. I don’t recall if I saw a specialist or what medications I took. I was diagnosed with degenerative disc disease and rest, heat and cold were recommended. Over the years, perhaps due to physical therapy exercises, the spasms retreated, and I rarely fell victim. When I did, there would be MRIs showing the progression and the beginning use of NSAIDs for the pain and inflammation.
I presently live in midtown Manhattan, so I have easy access to healthcare professionals, including those at the #1 hospital for orthopedics, Hospital for Special Surgery. Even so, I continue to suffer from this disease and am unable to find relief.
My OA spread, unbeknownst to me, until it surfaced in both shoulders. I was treated with physical therapy and NSAIDs, but eventually I was recommended for surgery but have opted not to because I am still able to manage. Next would be my hands, where nodes appeared at the joints and right wrist. Once more PT and NSAIDs were the treatment. Next were my feet, where I noticed pain and tightness when I would begin to walk. I saw multiple physicians, starting with a podiatrist, until OA was diagnosed.
Now, at 75, I have DDD and spinal stenosis as well as OA in both knees, left hip, both shoulders, both hands, right wrist, and feet. I can only assume whatever joints are left will eventually succumb.
It wasn’t until 2005 that I started to have discomfort in my knees and saw my back doctor who assured me it was from my back and that I needed to lose weight (I am morbidly obese).
Weeks later, when coming down a flight of stairs, my right knee gave out, and I spent the next few days bedridden searching for whom to see. An orthopedist took X-rays, told me I was bone on bone in both knees, and would need total knee replacement. I went for a second opinion at the Hospital for Special Surgery and the diagnosis of OA was confirmed. I was told it was up to me to decide when I would have both knees replaced. It amazed me that there had been no warning signs. I would continue with this surgeon and a nonsurgical orthopedist over the years for both care of my knees and my shoulders.
Once more I began PT and NSAIDs to help with the discomfort. Over time I began to feel better and any need for surgery got pushed aside. The arthritis, however, had already moved on.
In 2016, my right knee went out again, and I knew it was finally time to do the replacement at HSS. It would only be one knee due to my weight. I also had nerve conduction tests done to diagnose the neuropathy I was beginning to experience in my lower legs.
I had managed with PT and NSAIDs to survive from 2005 to 2017, when the left knee was replaced. I continued with PT but never felt better, and further tests revealed the left hip needed replacement. That was done in 2018 at NYU with the orthopedic surgeon I continue to use (he does hips and knees). My left knee, however, continued to be problematic. I had good range of motion and could walk, so they were reluctant to do a revise, but I have constant pain and tightness. I went to several doctors to confirm there wasn’t something wrong with the implant and was told it must have to do with how my body was accepting the new knee. The pain and stiffness have only gotten worse and I am worse off than before I had the replacement. This made me discard any thoughts of replacing the right knee.
And so began my adventures with pain medication. I had been using prescription strength Aleve®, but it no longer provided relief. It’s pointless to list all the medications I have tried. They include NSAIDs, analgesics, opioids, topicals, patches, even medical marijuana. Not one provides any relief. I consulted a number of physiatrists and pain management doctors to no avail.
I continued to try PT until COVID struck, and I no longer wanted to be someplace with others. I recently started PT at home but had to stop due to the resultant pain level.
Coping with chronic pain is now my reality, and it may be worsened by the possibility that I have fibromyalgia for which I’ve tried gabapentin but can’t tolerate it. Because I live in NY I can’t have the test for it because blood has to be shipped to California, and that’s illegal. I meditate and have studied visualization and biofeedback, but have yet to try the later two for pain management.
I am obese and guilty of not sticking to any diet that is supposed to help with inflammation. Food is my support system, and although I do make healthy choices much of the time, I am limited in what I have access to (being largely homebound and not up to cooking) and indulge.
Recently, my right knee gave out, and I can barely walk any distance. Replacement would be the only option available at this time. This disease has cost me everything because I am now dependent on a bariatric walker that doesn’t fold enough to put in cars and have to take disabled transit, which is completely unreliable. I can’t do most things with others so in time people move on. Everyone seems to think I am not doing what I am supposed to do to be better. I also am not able to do any of the things I hoped to in my retirement. I am unable to walk any distance without serious discomfort, and if I push pay the price. My life is largely confined to my apartment and sitting outside in front of my building.
OA makes you jealous of others. You watch and see everything you can no longer do. And people aren’t sensitive enough to be aware of how difficult this is. It’s like putting a starving person in front of a dinner at a gourmet restaurant and not letting them eat.
What I would like researchers to know, and I can’t imagine they don’t, is how desperately we await some reprieve from a disease that doesn’t kill but destroys all semblance of normalcy for so many. How the body works is so complicated; we have so much more to learn. And yet, we seem to be nowhere with this. I would love to think there would be better drugs to help soon, but from my work I am all too aware of side effects. I would prefer we knew how to prevent this disease in the first place, or if nothing else, delay or slow it down.