POLYMYALGIA RHUEMATICA

I would have to say my major issue is Pain, unrelenting Pain. Specifically in my neck and shoulders and upper arms.  I was some what diagnosed with Polymyalgia Rhuematica   because taking  prednisone   the first time I came down with it(but never diagnosed as such ) about 7 years ago pretty much took care of it. But that is hindsight,  I remembered that at that time my sciatica was super intense and I had noticed every time I was given prednisone for other reasons that it helped the sciatica so I asked my doctor at the time if we could try a regular dosing of prednisone so we started at 40 mg. and wow relief finally, but at the same time both shoulders and upper arms was hurting major bad and it too disappeared, I just thought I had arthritis and so when the pain left too I never gave it much thought. So I  after about 6 years on various levels of prednisone I finally weaned myself off of it last winter 2014 . But as soon as I stopped taking the prednisone my shoulders and upper arm pain came back with a vengeance . I had Xrays done and it showed severe Osteoarthritis in both shoulder joints. So I was given various  NSAIDS to ease the pain which in fact did absolutely nothing for my pain. So I went on the Internet and started to try to figure out what in the hell my problem was because it was terrible and unrelenting  pain I was unable to use my arms, I was needing help getting dressed, I could no longer reach for any thing I only had use of my arms from my elbows down  the pain levels was around 8 or 9 and this was CONSTANT. I finally found a diagnosis I thought fit and told my doctor who agreed that it sounded like it and I was given blood test and they came back with the right numbers elevated that determined I probably have PMR or polymyalgia rhuematica  , folks this is an extremely debilitating disease, I can handle disabilities but it is the chronic pain that goes with it that makes life suck. I was not put on a large dose of  prednisone only 10 mg.
the usual  starting dose is either 15mg. or 20mg. so it did knock the pain down a few numbers and the use of my arms have improved but it has not wiped out the pain and immobility of it like the higher dosage I was on before. I have been on 10mg. for a year now and it is just not doing it for me. But I am somewhat OK with that because the side effects of prednisone at 10 mg. is not near as bad as it can be at 20mg. But the shoulder joint pain on both arms is not effected much by the prednisone it mainly works on the muscles in my upper arms which feel like extreme muscle cramping and like some one is gripping my arms as tight as can be, so even if the symptoms are completely gone from my arms I still have the shoulders to deal with and folks this is NOT like  the  Osteoarthritis that I deal with in my knees and hip this pain is nonstop constant unrelenting burning searing deep achy pain that stays around 6 or above level with pain medications. It may show up on Xrays as osteo but it does not feel like it. I have got to find some relief and find a correct diagnosis for this so I can get the right medications for it. Now to top it all off I have some kind of cyst or nodule or growth smack on top of my right shoulder that is now the size of a baseball, I have been to 5 doctors and none of them did a damn thing for me, I need this monster removed. So my next chore is to find a new doctor ,the one I had ,up and left town and so I am now without a doctor and I need to find a surgeon as well, I need some relief and I am damn tired of the run around I have had with most of the doctors I have dealt with. My pain tolerance level is diminishing rapidly.
I have had to sleep  in my Recliner that lifts, for 4 years now because of this shoulder and arm pain and because of the  Neuropathy pain caused by my back issues, from my knees to my feet , when laying flat in bed it feels like my legs are on fire and I can not lay flat because of the shoulders and I can't sleep on either side at all, so I have slept in the living room and no longer able to sleep with the hubby any more  and  at the time 34 years of sleeping together, it has been a major adjustment.
But being able to go to another doctor has been a challenge these last few month, they discovered cancer in Hubby's kidney, he had it removed 2 weeks ago and now has just one kidney, his cancer was 5 centimeters and stage 2 , they are very optimistic for his full recovery will have to have check ups every 3 months for 5 years, so he has been foremost in my mind these  past couple of months, but now I will have to find some help, I have waited long enough.
healing blessings
PPP