Thank you for your thoughtful response, Jennifer. I appreciate you taking the time to give me so much information. I have been to chiropractors, a physical therapist, acupuncturist, and a myofascial release massage practitioner. I use essential oils in my diffuser. I’ve tried heat and cold to relieve the pain when it occurs. The description of your pain is very close to mine, which starts on the right side, at the very top of my shoulder at the base of my neck. It can move up the back of my neck and head as well. It used to also affect my mid and lower back, but I haven’t had that specific pain for some time. In searching for answers, and because I refused to undergo nerve-blocking injections (which was the best the neurologist could offer), I discovered the work of Dr. John Sarno, who identified Tension Myositis Syndrome, where the brain uses pain as a protective measure. Sounds way out, but if you read what he said, it makes sense for pain with no other explanation. I had non-Hodgkins Lymphoma in 2011, and suffered neck and shoulder pain during treatment. Long after successful treatment, the pain would occasionally return. Now, after a successful transplant and aortic valve replacement surgeries, I’m back to suffering frequent bouts of pain. I’ve used Dr. Sarno’s technique for minimizing pain and trying to convince my brain that there is no organic reason for the pain I’m experiencing. After numerous ultrasounds X-rays, and MRIs, I know that to be true. An interesting phenomenon is that I can be distracted from the pain if it isn’t intense, and I’m engaging in a fun activity that requires concentration, or when I’m with friends having a good time. Another indication that the pain, although real, isn’t organic.
I used to find creative enjoyment by sewing and knitting clothing for collectible artist dolls. I have an extensive collection of “models.” I spent many happy hours dressing them and offering the clothing to other collectors on eBay, Etsy, and my own website. Since my transplant I have no interest in sewing or knitting. It breaks my heart to look at the dolls and my voluminous stash of fabric and yarn. I used to love to read. My desire to do that has gone as well. I feel like a different person.
I am grateful for many things in my life. I have a wonderful, devoted husband of 55 years, three great kids, and two precious grandchildren. My husband and I split our time between Maine and Florida, the best of both worlds. I have every reason to be happy, notwithstanding health issues, which I’ve been fortunate to have had successfully addressed by the excellent physicians and surgeons at Mayo.
Thank you again for your response and the suggestions. I will follow up on all of them.
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@karen1945 I was delighted to read your response today, and hear about your experience. I was not familiar with the work of Dr. Sarno. I know that Mayo has a pain rehabilitation program and perhaps that was mentioned to you.
What I learned in my experience is that pain and fear and interlinked. I had grown up as child fearing pain from medical providers and having adverse experiences like that in childhood left a learned pathway of all the stressful memories and pain in my brain. Every new worry about an upcoming event like a surgery triggered that memory of past emotional trauma and fear. I did a lot of work figuring out what was triggering the fear response and why, by looking at the relationship of what happened in my past that was related and how not receiving support for fears during my childhood contributed to this mess. Doing all of this changed my life and my outlook, and fear did not control me anymore. That has been tested a few times with other surgeries since my spine surgery, and each time, I faced it fearlessly and made choices to better my health.
My MFR therapist told me that often patients have an emotional release during treatment of stretching the fascia that is linked to past fears, and it becomes a way to unwind that past history as well as treat the physical reason the pain may be there. Writing down my own history of stressful and fearful events helped me see a pattern that helped explain my fears. That was a crucial step in deprogramming them. Certainly, the major surgery that you had created scar tissue and internal fascial scar tissue. Doing MFR therapy can help loosen all of that. Tight tissue can generate a lot of pain. It takes a while to work through fascial tightness as you work through to deeper layers.
Can you share some photos of some of your creative work? I would love to see that! I also ave a stash of fabric from sewing projects I have yet to complete, and paints and canvases and paper for paintings yet to be painted in addition to thousands of my own photo references of things that want to be painted. Sometimes interference of life just gets in the way for a while at least.
I know that I feel I am most alive when I am creating something if I can overcome my own inertia and just get started. I know you are doing a good job in focusing if you can reduce pain that way, and focusing on something creative could add to your success. It must be beautiful in Maine. I traveled through Maine years ago on a painting trip to new England and the Maritime Provinces. That was my first big adventure alone out on my own as a young person and I spent a month camping and living out of my car. I set up my easel and painted out on a rocky coast and returned from Nova Scotia by ferry.
Do you think that perhaps doing a small creative project may make you feel better? Listening to inspiring music helps me get into a mood to create. It is the "Zone" that artists try to be in when they are painting, and when I get into that zone, time passes without my being aware of it.
You may also enjoy this discussion and you can find me in some posts and pictures on the first page of it.
Here is a similar discussion about how music helps enrich our lives. https://connect.mayoclinic.org/discussion/music-helps-me/
I would love to see your dolls and their lovely clothing. Do you have a photo of a favorite place that makes you happy just to look at it? Do you have some good memories of a place like that?