I'm still here

[Tinker]

Hi everyone,

I've been gone because we moved.  UGH!  It has nearly killed me but we are almost settled now.  Wow, what a drain on my body and energy level.  I've stayed in bed today most of the day but feel like I've run a marathon.

I've got a new diagnosis along with the Sjogren's.  My Rheumatologist tells me I have polymyalgia rheumatica.  He prescribed steroids but I just can't take them.  I stay awake all night.  There was a disagreement between my neuro and rheumatolgist about whether I had polymyositis.  I finally chose to agree with the rheumatologist that I didn't.

I sure couldn't tolerate the plaquenil.  Made me sick as a dog and dr. took me off of it.  Thank goodness.  I'm surviving but have NO energy.  I finally lost 13 lbs on my own without trying.  Yeah!!!! 

Hope I can get back here soon as I have missed everyone.     Tinker

[irish]

tinker, My goodness it has been a long time since I've seen you on the board. Sure hate to hear that you are done in but moving will kill a healthy person---not to mention what it can do to someone with autoimmune disease. You are not the only one that moved. Billye moved also and ended up exhausted and hurting a lot. Makes me wonder what the heck I am supposed to do. I can't live in this big house forever!!!

Sorry to hear that you can't take the prednisone. I have trouble with it also with the big doses so when I get burst and taper now it starts with 30 mgm and goes on down. If I am on the higher dosages I have anxiety and am so hyper I am almost beside myself. I can tolerate the 10 mgm a day and have been on 10 mgm every other day forclose to 5 years.

My MIL had the Poly. Rheu. and it seems that I have read that this disease burns itself out a lot of times in around 7 years or so. Have you heard anything about this. My MIL had so much pain in her legs and arms and she didn't sleep good either. Hope that you can find some relief from this plus help for the insomnia. Glad to hear from you. Irish

[Joe S.]

Tinker, my wife and I are planning a move now.  We  have to repair and remodel the house before we can move in. The move has to be complete before the end of July. At this point I have no Idea how we are going to make the time line with my  health issues.

I was once told that I have polymyalgia but I believe I only have fibromyalgia because of the differences between my symptoms and those of the people that I know with polymyalgia. I have also been told that they are the same. Since I believe that there are six forms of fibromyalgia, polymyalgia may be a generic.

Take care of yourself and recover as quickly as you can.