@SusanEllen66 & @debsohn
For many years, I was in pain with random diagnoses, and thought there was nothing to do about it. I had several joint replacements & surgeries due to severe osteoarthritis, but every time one joint was fixed, another flared.
I also had chronic lung issues, though most tests were "within normal range." Once my lung condition was diagnosed, and I was put on a horrid regimen of 3 antibiotics for 18 months, my pain worsened, I lost weight, lived with severe fatigue & nausea - basically had no life.
Thanks to the information and encouragement I received from the MAC (infection) group on Connect, I decided "Enough! It's time to take control!" With the support of my ID doc and the group, I stopped the antibiotics, but I still had pain & fatigue. I had a long talk with my PCP of 25 years, and she said it was time to pursue another path. She referred my to the Pain Management Team in our large clinical practice, and my life began to change.
The pain management doctor explained about chronic pain & the brain. She explained the diagnosis was immaterial if there is no absolute cure for the disease or condition. We had to teach my body to "see" and manage the pain differently. This led to training in how to handle the pain through meditation, visualization, physical therapy, diet, exercise, activity management and a very small amount of non-pain medication that helped my brain adapt.
That was 2 years ago. Life is not perfect today. Pain, fatigue & lung issues still interrupt my life at times. I still cannot do everything I used to do, but a LOT more than I could 2 years ago. When I get into a pain cycle I cannot break alone, I double down on using my tools. Or I return to my special PT for help (we call it a tune up.)
Have you ever thought about ignoring the fact that there is not a specific diagnosis, and and treating the chronic pain as an ailment all its own? Mayo Clinic offers a comprehensive Pain Rehab Clinics -
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691in patient, out patient & on line.
There are other in patient & out patient clinics around the country as well. These are not "pain doctors" whose goal is to prescribe medications.
Are you interested in an option like this?
Sue
Sue
Thank you for the information on pain management. I am definitely going to go to the site for comprehensive pain Management.
I decided to become active here of the Mayo discussion boards to see what help was available through Mayo. A couple weeks ago my sister-in-law said to me “what would you do if you could do anything to take care of your pain?” I told her “I would go to mayo clinic.” And here, in my first post, I found someone like you who can direct me towards my first step.
I do receive pain management through Boston‘s Mass General Hospital and I have had 17 surgeries myself for osteoarthritis, scoliosis and a very severe case of osteoporosis which has simply just fractures my bones. I have tried everything from diet to yoga to PT to exercise to therapy to steroids to epidurals to acupuncture and to talk about Spinal Cord Stimulator. I can honestly say that none of it works for me long term. I’m on a very low dose of tramadol mostly because I have over the years I have had to accept pain as my baseline.
Hearing more about your story has been so helpful.
Thank you again.
Debra