I thought I knew about pain…I have had my share of injuries, I’ve given birth three times and, shoot, my business is called Pain Free Performance! I have spent my entire career helping others get out of pain. But, after all of these years, I have a new understanding and appreciation of what it is like to really live in pain every minute of every day and not know the way out.
One morning last August my alarm clock went off as usual. I attempted to look at the time and turn off the alarm but could not turn my head. I got out of bed that morning thinking I had a stiff neck. As the day progressed my neck stiffness eased up but my body ached. Did I have the flu or maybe I “slept funny”? I got to work and did a few of my Egoscue e-cises to help with the pain.
The next day when I tried to lift my right leg, it felt strange and heavy. The day after that, I could barely lift my right arm. The pain was different than any pain I ever experienced and it was not from overuse or a pulled muscle. Concerned, I went to see the doctor. After my exam, a lot of research, and some process of elimination, the only thing that seemed to make sense was Lyme disease. Lyme disease is a tick borne illness and is increasingly prevalent in the Northeast United States. What was strange is that I never saw a tick on me nor did I have a bull’s-eye rash which is a sign of a tick bite in need of treatment. My Lyme test (a blood test taken at the physician’s office and sent to a regional lab) was negative.
As days passed my pain became worse. The pain that I felt in my shoulders was excruciating. It felt to me like my shoulders were no longer connected properly. I could not dress myself or lift my arms to wash my hair. Both of my shoulders were frozen. My left ankle was swollen, some of my fingers were numb and just about every joint in my body hurt. I tried to continue my Egoscue e-cises but soon I knew I needed more help.
Back to the doctor I go. I was put on the standard antibiotic for Lyme and re-tested. My second Lyme test was also negative. Two months on the antibiotics and nothing had changed… in fact I felt worse. Because my case was not typical for Lyme disease, and the tests were negative, of course my physician (who leaves no stone unturned) wanted to rule out other medical possibilities for the symptoms. He even consulted with a Lyme expert in Maryland and suggested that we consult a neurologist, a rheumatologist, and also an endocrinologist. I was convinced that I did not have a neurological issue. I also felt strongly that I wouldn’t have just gotten up one day with rheumatoid arthritis. I was in so much pain and I was frustrated and confused. How did this happen to me? I am typically healthy and active. Now I can barely get out of bed!
I was at my wit’s end and in so much pain I decided to try a massage just to feel better for a little while. The therapist asked me if I had any medical concerns and I told her what had been going on with the possible Lyme disease. Her eyes got huge and she told me was in the exact same place herself just six years ago. She had to quit her nursing job because her pain was so bad that she was not able to work. She learned quickly that there is not good information or protocol to treat chronic Lyme disease in our traditional medical community, so she had to become an expert in order to find a remedy and regain her life. I learned so much from her. Only about 50% of people with Lyme disease get the bull’s-eye rash and only half of the people bitten remember seeing the tick. The mainstream blood tests for Lyme are not accurate. Antibiotics are usually effective when you are treated soon after being bitten by the tick. Long term antibiotics can be very harmful.
My new friend, Jean Weiss, RN and Certified Massage Therapist, has devoted her life to educating people about Lyme disease. She has just started a Lyme Disease Support Group and is working with physicians in the area to help treat people in the community with Lyme. She taught me there is hope. There are additional treatments for Lyme. There is another more accurate blood test for Lyme that is processed at a lab in California. Finally I tested positive for Lyme and with Jeans help I am almost back to 100%!
Sometimes our pain is not musculoskeletal, it’s something else. At Pain Free we’re the experts at treating musculoskeletal pain and we can always help you with that. We also want to be good at referring you to other talented practitioners we have the good fortune of knowing who have different expertise… especially when we experience it first-hand!
If you or someone you know need help with Lyme disease, want the schedule for the Lyme Disease Support Group or just want to know more, below is the contact information for Jean.
Massage and Wellness
In Good Health,