Back in 1994 I was diagnosed with Degenerative Joint and Disk diseases. At 30 years of age I was plagued by diseases that usually strike people of a more advanced age. I had serious nerve pain and my joints made grinding sounds, popping and cracking as I lost the cushioning material in my joints and I experienced more and more bone on bone deterioration.
In 2005 an MRI identified a number of issues in my lumbar spine, as I’ve outlined in previous blogs, 2 bulging disks at L3 and L4, 1 disk at L5 that was completely gone, a synovial cyst at L3 and L4 in my spinal canal, lumber spinal stenosis and lumber spinal spondylosis. I understood that these diagnoses had also caused nerve root damage of my sciatic nerve.
I used a power wheel chair from 2006 until 2015 when it broke down and I could not get it repaired. At that same time I had begun to see a new doctor who gave me a diabetic diet to follow and wanted to work on weight loss. The new doctor insisted that I had to get up and walk, I had to push through the pain, otherwise I was going to have a stroke or heart attack within the year, as I’d gained an enormous amount of weight. I weighed 472 lbs. I had weight related asthma, edema, high blood pressure, etc.
I did as she instructed, I started pushing my manual wheel chair around the neighborhood, using it for support, but also to sit when I was out of breath, the pain was too much to withstand. Over time I progressed to using a rollator ( a walker with 4 wheels and a seat ) and eventually, I walked unassisted.
The pain hadn’t waned during that time. I kept communicating to my doctor that I was struggling with the pain, that the pain medication she’d given me wasn’t helping. She dismissed the pain, saying everyone has a little degenerative joint disease as they age. The pain will diminish as I lost more and more weight because the stress on my joints would lessen. I Just had to push through.
My doctor was willing to try injections in my knees to address some of the pain I was experiencing, but after a number of injections over a year’s time, they weren’t helping so she stopped offering them. I asked, as I had been consistently, for a stronger pain medication to address how uncomfortable I was becoming. She refused.
The last appointment I had with her she finally acknowledged how much pain I was in. I’d been limping for quite some time as the pain in my left knee, down my calf, into my ankle and the top of my foot had become so bad I’d tried arthritis ointments, braces, etc. to no avail.
We talked about my previous diagnoses and for the first time in 4 years of treatment with her she acknowledged to me that she didn’t have a record of my 2005 MRI or the report issued with it, nor did she have the report from my visit with the neurosurgeon at the time. So, all this time, had she just not believed me when I explained to her what had been found? Was she dismissing my pain and what I was telling her because she didn’t believe me? Did she think, as many physicians do, that if you’re obese it’s because you’re lazy and unwilling to exercise, rather than having a justifying reason for lack of mobility? Did she think I was making up diagnoses to make excuses for not getting up and moving more?
She decided to prescribe a stronger pain medication and to have my knee and hips x-rayed again and ordered an MRI of my lumbar spine, as she wanted me to go to Physical Therapy and then to an Orthopedic doctor because she wanted him to make a determination about knee injections, or possible back injections. She thought my “fibular head” was deteriorated causing pain in my knee and that it was likely my sciatic nerve causing the pain down my leg and into my foot.
Last Friday I had the MRI, this past Tuesday I saw the Orthopedic doctor. He did additional x-rays of my lumbar spine, saying an MRI wouldn’t have shown him what these particular x-rays did. He showed me the pictures and used his pen to highlight what he was describing. Yes, my L5 disk is gone, all of my lumbar disks are deteriorating and considerably narrowed. My vertebrae have developed bone spurs that have effectively “self-fused” my vertebrae and, as I’d been told in 2005, I had been weight bearing on the small facets on the back of each vertebrae, rather than the large blocks of my spine and over time, from excessive exercise (excessive for my condition), the facets had been completely ground off. They are gone.
He referred me to Pain Management (imagine that?) and a doctor who is going to administer nerve block injections the beginning of December. Why, in all this time, since 1994 had I never been referred to pain management? Why had I not ever been taken seriously regarding the pain I’ve been living with?
When I met with my family physician, when she finally acknowledged my pain level, I explained to her again that the neurosurgeon had told me in 2005 not to participate in any percussive activity. She looked at me and said, “and you’ve been walking.”
Basically, without corroborating test results to back up what I’d been telling her, she had told me to push through the pain, that the pain would diminish with the weight loss, had actually instructed me to do exactly what I’d been warned against doing, had instructed me to do activity that actually significantly progressed the damage to my spine, creating more pain.
Now, my spine and disks are irrevocably deteriorated, sustained damage that will impact me for the remainder of my life. I now have to limit the amount I’m walking, stop doing things like raking, shoveling, lifting, etc. I am using a heating pad multiple times a day currently to get some relief. The stronger pain medication she finally gave me is causing debilitating side effects… light headedness, nausea, a feeling of motion sickness.
I wonder if I’d have been a thin person reporting the same symptoms if I’d have been taken more seriously? The disabling conditions had caused the weight gain, not the other way around. The only person who’d ever been fully supportive of me had been a chiropractor who’d told me in 2005 that he’d seen young people with the same diagnoses as I’d been given, that they were not overweight, they had early on-set degenerative disease.
Why do doctors prescribe treatment if they suspect or know they don’t have all the information? I’d told my doctor repeatedly that I’d had an MRI in 2005 following a car accident that had identified all these additional diagnoses. Why didn’t she ever ask me where the MRI had been done, if I could get or had a copy of the report or a CD with the images on?
The idea that losing weight will make everything better, will make the pain decrease was simply not true. Perhaps for some people that is the case, but as a friend of mine recently said, I think the value of exercise is dependent on the conditions the person has and the condition their body is in at the time. It can do more harm than good.
While I’ve managed to lose 200 lbs in 4 years and have only gained back 14 lbs of that weight in all that time is a positive thing, of course, but my doctor hasn’t been able to convince my insurance company to remove the excess skin that causes me to be, for all intents and purposes, “disfigured,” and now to find out that all the walking I’ve been doing has actually caused even more damage to my spine… makes me question whether it was all worth it? Was the trade off worth all the pain, struggle, the negative self-image I struggle with?
I honestly can’t say how I feel about this new information. I’m still trying to fully digest it all and determine how I can adapt to it, that’s really one reason why I decided to write this blog, to see if I could better wrap my head around what I’ve been told.
I think we need to seriously re-evaluate the way the medical profession approaches the treatment of people who are obese. That’s my first and thus far only take away from this… pretty basic, I know.