PMR Lessons

[Sandy1947]

Years ago I had mono in college, later Epstein Barre virus, last year Bell's Palsy. A weakened immune system ultimately led to PMR. A doctorate at 27, marriage, children, grandchildren, divorce, dating, 6 year teaching career, successful financial services career, founder of a charity that helps urban teens and their families, joys, disappointments, breathing polluted air in the city. So many factors contribute to PMR it's hard to isolate specifics. I believe we are unaware of the stress that impinges on our lives until PMR smacks us into a different reality. It becomes a wake up call to entirely readjust. I realize I can not do this alone. Independence becomes dependence. Strength becomes weakness. Humility wins. The new normal requires flexibility and gentleness. Trades are important. No more frenzy.

[Aleish]

Thanks for sharing your story but I have had a different take on this illness because I was not able to find my way in a world that would have allowed me to reach my goals. I did the 23 and me test and discovered that I have the MTHFR gene defect on the C677t. This causes a detoxification issue and I'm wondering how many of us are sick because we are just unable to rid ourselves of the toxins.

[Sandy1947 in reply to Aleish]

So sorry for your detoxification issue. I'm not familiar with the test or gene. How are you managing?

[Marilyn1959 in reply to Aleish]

Hi Aleisa. Just reading this thread. I would go back to GP or Rheumy to check out the jaw pain, rather than make assumptions. I am assuming, perhaps incorrectly, that you have been diagnosed with PMR? I am also presuming you are taking pred? What dosage?

Jaw pain could be a sign of GCA, or tooth infection, or simply an indication that pred level needs looking at, hence why I would get it checked out as a precaution, especially since the stiffness, aches and pains in other parts of body have noticeably diminished with treatment.

[Aleish]

Ver early on in treatment and struggling with my puffy looking face . Only symptom that is not all gone is the jaw pain on occasion, but my body pain issue is almost not around. I'm tired and depressed but that is from being ill for years with immune stuff . I'm so looking forward to getting some real quality of life back. Only diagnosed in May and have a lot of work to do for remission. Staying hopeful.

[Sandy1947]

Hopeful is good!