I have been suffering for approximately one year with disabling pain in shoulders/arms and hips/thighs.

At first we thought it was spinal because I have fusions at C5/6 and L5/S1. MRI showed some spinal issues but no bilateral pinched nerves.

My EMG was normal. My sed rate and CK were normal.

They took x-rays of my shoulders to see if they had any calcifications and nothing.

Dozens and dozens of blood tests for RA, myositis, Lyme's, and most everything under the sun and really nothing was off. My PC doctor said “you can’t have PMR.”

I could not get an appointment with rheumatology at Mayo and my doctor of the moment refused to do any further testing even though I requested an MRI of my shoulders/arms.

So I went to an orthopedic clinic in Woodbury, MN. They have a Rheumatology dept within the clinic/practice.

My new Rheumatologist agreed to request shoulder MRIs with and without contrast. In less than three days I had an affirmative diagnosis of PMR!

I am doing a burst and taper of Prednisone for a month to get the inflammation down. After I taper I will try other non-corticosteroids.

Please don’t give up. I lost a whole year of my life due to disabling pain. I have hope again that I may be able to get my life back.

I wish they would have done MRIs on my shoulders first and foremost. It would have shown the disease and I would not have had to suffer through the pain and emotional devastation that this year took from me.

There are up to 15 percent of the PMR positive population that never have elevated sed rate or CK. Don’t let them gaslight you and say you cannot have it because your blood doesn’t show it!

I am on Day 3 of prednisone and have been able to raise my hands above my shoulders for the first time without extreme pain for the first time in a year. I have so much renewed hope.