A quick google search defines chronic pain as "pain that lasts longer than 12 weeks". Really, that isn't very long. Suffer for longer than 3 months and your doctor will label your pain as "chronic". When I hear the word "chronic" I think of it as something I am never getting rid of. I think believing you are a "chronic pain patient" is very powerful and allows the pain to be even more present in your life.
So in this post I am going to let it all out. I am going to detail everything I have went through over the past 3 years as I remember it. In the future, I plan to post a shorter version of this for those who just want to know a summary of my experience and what I did/am doing to get better NOW.
When I was 10, I was diagnosed with idiopathic adolescent scoliosis (thoracic) during a routine school physical. I was evaluated by an orthopedic surgeon in St. Louis, MO who said we could watch to see if my curve progressed. Treatment included bracing and spinal fusion surgery. My parents also took me to a chiropractor 3 times a week hoping to slow the progression of my curve. However, my curve progressed and I began wearing a back brace 23 hours a day at age 11. You can imagine how challenging it was to be that age and wearing a back brace. I wore the brace 23 hours a day until I was 16. At that time, my curve was a little more than 40 degrees and my doctor gave me the option to have spinal fusion. He said he recommended surgery for patients with a curve of 50 degrees or more, but I was in the middle, gray area. We could continue to watch for progression of the curve or fuse my spine so that it would not progress. Honestly, at the time, I really wanted to be done with the whole scoliosis thing. So I did decide to have the surgery and assumed if I had the surgery I would NEVER have to worry about my back again. I had the surgery the summer before my senior year of high school in 1997. It was the most painful thing I have ever been through, but then the pain went away. I went back to normal activities and a normal life. I even "forgot" I had scoliosis other than having to go to some follow-up appointments. I never had any back pain, before or after my surgery, other than immediately after the fusion surgery. That post-surgical pain resolved within a few weeks.
Here are my X-rays from 2010. My doctor, Dr. Lawrence Lenke, said that everything looked good and unchanged since my surgery.
However, 4 years later I started having pain in my upper back.
I got married at the end of 2013. After we got our wedding pictures back I remember being shocked at how my back looked. If I am being truly transparent here, I remember not liking a lot of the pictures because of how my back looked. Now I knew my anatomy was not "normal" due to the scoliosis and the surgery, but I guess until I was photographed in a strapless dress, at lots of different angles, I didn't know how out of place my right scapula looked. Why am I telling you this? Well, hang with me here, it will make sense in the end.
Three months after the wedding, I started having this aching pain in my right upper back. The pain was near and under my right scapula (the area I had focused on in my wedding pictures). The pain would only happen at work when I occasionally scrubbed surgeries (I am a RN). As soon as the day was over the pain would stop. I ignored it for awhile. Okay, a long while. It was usually only happening once a month when I scrubbed surgeries and it resolved so quickly. I was hoping it would just go away. Deep down I knew I needed physical therapy, but I just kept putting it off. I even started doing CrossFit during this time. Yikes. What was I thinking?!
After about 10-11 months of this pain, I started having tingling near the pain. Now this really scared me. I had never had any sort of tingling before and as a medical professional I knew this meant nerve involvement. The pain also started to be more constant, no matter what I did. I even asked to stop scrubbing surgeries, but that didn't matter anymore. I would wake up feeling great and pain free then as the day went on the pain would start. It oddly started at about the same time every day. I began to wait for it to start because I knew it was coming. And I woke up dreading that hour of the day because I knew it was coming. It was this deep aching in my upper back near my out of place scapula. Plus, I was having the tingling when I would move my arm in certain ways.
Of course, now I had no choice but to call a doctor. I started with a local sports med doctor's office. They refused to see me because I had spinal fusion. They said I needed to go to a pain management doctor. I decided that was not where I wanted to start. Next, I called my orthopedic surgeon who referred me to a physiatrist at Washington University in St. Louis. I called to make an appointment with the physiatrist and they couldn't get me in for 4 months! I was pretty sure that I wouldn't be able to move my arm in 4 months (FYI my mind likes to catastrophize and I have anxiety). So I called around and was able to get in with another physiatrist within a week. She was not a Washington University doctor. She told me I had nerve damage and needed to severely limit my activities in order to prevent further injury. She suggested doing a nerve study, but figured my nerve was already "dead". She suggested acupuncture and I did have one session with her. However, I left the office in tears thinking my back was so messed up and I didn't even know it. I was mad at myself that I didn't look into seeing a doctor when this first started.
I called my orthopedic surgeon's MA and told her about my experience. I told her I couldn't get in with the Wash U. physiatrists for 4 months and I told her what the other physiatrist had said. She was so helpful-I will never forget her. She told me that physiatrists outside of Wash U. aren't used to seeing surgeries like mine and she was able to get me an appointment with a Wash U. physiatrist in 2 weeks.
I was seen by Dr. Tang at Wash U. He told me I had bursitis. He also did X-rays and said my bones looked good. He recommended PT and put me on a round of anti-inflammatory meds (meloxicam). He asked if I wanted a cortisone injection and I said no. I wanted to try oral meds and PT first. It was a totally different experience and I left feeling good that I knew what was going on. Always get a second opinion (or a third, fourth, or fifth!!)
The meloxicam helped with the pain and I started PT. After I got done with the round of meloxicam, there was still some residual pain. I decided to do some research on bursitis and what alternative treatments were available. I read about a lot of people that had success with turmeric and immediately ordered some from Amazon. I used Dr. Danielle's Turmeric (Buy Here) and it is the only brand I can personally vouch for. Within 3 days of taking this turmeric my tingling stopped and the pain was 90% gone!! I was so impressed that I emailed the company thanking them and gave them a stellar review on Amazon. I also asked them how much of the turmeric I could take as a max dose. I was told I could take 6 capsules per day (the bottle says you can take 3 per day). I continued taking the turmeric for about 6-7 months along with PT, taping my back, and myofascial release. I really started to feel normal again. I did go in to see Dr. Tang in May 2015 for that last little bit of discomfort and he did a dry needling (acupuncture) treatment. It seemed to help. Other things I tried with mixed results were:
-various herbs-bosweila, glucosamine chondroitin, white willow, dandelion, ginger
-rest, ice, heat
It seemed like that last little bit of pain wanted to hang around. It was definitely significantly improved. 90% better with the turmeric and PT. But it seemed like no matter what I did or didn't do that last little bit wouldn't budge. I started to notice, though, that the pain was so inconsistent. I almost felt like there was no rhyme or reason to when it would happen or not happen. Then as soon as I would make a doctor's appointment, the pain would vanish, I would cancel the appointment, and, predictably, the pain would come back. I became really suspicious that this pain was all in my head and then I found out it was...well sort of.
You see right before my wedding I had been training for my first marathon (And planning my wedding...again what was I thinking?!?!). The month before the marathon and my last few 20 mile runs I started to have this pain in my foot. The pain would start days leading up to my 20 mile run. I would freak out about it thinking I was going to miss my 20 miler and ruin my chances of finishing the marathon (catastrophizing!!). I would email my running buddy and say I would probably have to miss our run. Then the next morning, when I was supposed to do the run, I would wake up and the pain would be gone! This happened several times. I became suspicious that the stress of the marathon and the wedding was getting to me. That was my first true experience with psychosomatic pain.
So with this lingering back pain and its inconsistency, I started to think back to my experience with the marathon and foot pain. I started googling and before I knew it I had found my answer. Enter Dr. John Sarno MD and his book, Healing Back Pain (Buy Here).
When I read Dr. Sarno's book, I knew exactly what I was suffering from!!! Dr. Sarno believes that most chronic pain is the result of repressed emotions not structural abnormalities. Even if you do have structural abnormalities, most of them aren't associated with chronic pain. Certain personality types are more prone to chronic pain. He calls these people "goodists" or perfectionists. I definitely saw myself in the person Dr. Sarno described. Dr. Sarno states that those suffering from chronic pain are actually suffering from what he calls Tension Myositis Syndrome or TMS. I won't go into too much detail here as there are other websites that have done a great job explaining TMS. What I will tell you is that I read Healing Back Pain and used the techniques described in that book and my pain was COMPLETELY GONE.
I was then discharged from PT and was able to stop taking the turmeric. That was July of 2015. I started seeing a therapist also hoping that would help me remain pain free.
For a more in depth explanation of TMS, I have found this website to be helpful:
I had been pain and tingling free since July of 2015. I felt so normal. I began to forget I ever had an issue and even started doing a little more high impact movements as the gym. Then in early May 2016 I felt it. The tingling started again. Okay. I thought. I have been through this before and I know how to handle it. I started taking the turmeric and I started doing my PT exercises again ( I had stopped a few months after I was discharged from PT). I scheduled a massage and I tried not to freak out. Again, within a few days of taking the turmeric the tingling stopped. However, a month later it started again. I made a doctor's appointment. Restarted turmeric and the tingling stopped. I ended up cancelling the doctor's appointment and then two days later the tingling started again. I thought about Dr. Sarno's work and TMS, but I had convinced myself that that wasn't it this time. I told myself I wasn't having pain I was having tingling and tingling was definitely some kind of nerve issue. The tingling would only happen a few times a day and most of the time I was able to forget about it. I did make a doctor's appointment again, but it wasn't until mid-October. In the weeks leading up to my doctor's appointment, I noticed the inconsistency of the tingling.
I did some googling about TMS and learned that tingling COULD be a symptom of TMS. I immediately read Dr. Sarno's other books, The Mindbody Prescription (Buy Here) and The Divided Mind (Buy Here).
The day I started to read The Mindbody Prescription my tingling stopped!!! I couldn't believe it!! This again was TMS!
You see your pain will manifest in the area of your body where you are most likely to believe it. That is why my brain picked my upper back near my shoulder blade (the area I was very concerned about when I saw my wedding pictures). This is also why my brain picked tingling. It knew I was really freaked out by tingling as opposed to pain. The pain acts as a distraction. It distracts you from other things in your life. For example, you obsess over your pain instead of thinking about the fact that you are unhappy in your marriage (or something else unpleasant like that). Personally, I have had one of the most challenging years of my life for reasons I won't go into here, but I can see why I developed TMS. TMS is actually the brain's attempt to help you get through life by giving you something else (pain) to focus on rather than uncomfortable emotions.
Your pain is real. However, it is not caused by any structural abnormality. Yes, I do have a structural abnormality, but pain is not typically associated with scoliosis.
Now I know I have TMS and I know what to do if it comes back. I have felt some mild aches and a few tingling sensations here and there. When that happens, I just stay consistent with Dr. Sarno's suggestions and it vanishes.
Watching this YouTube channel also helped me immensely. This therapist worked with Dr. Sarno. I have been following her suggestions, that she explains in her YouTube videos, and I highly recommend them. She recommends journaling to help with the repressed emotions. I have also been meditating for 10 minutes per day.
I have an appointment with my physiatrist tomorrow and plan to discuss TMS with him. I am going to ask for a referral to his pain psychologist so I can further uncover any emotions that may be unconsciously present.
I wrote this post to help other people with chronic pain. I wanted to give hope to other people struggling as well as make other people aware of TMS. If you have any questions feel free to email me, but I would highly encourage you to read Dr. Sarno's books and research TMS and the Mindbody Syndrome.
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