My story

Bones, joints and muscles
1

My symptoms started after Christmas in 2010 and I steadily went downhill over a period of 5 days until I could no longer get out of bed by myself, nor get off the toilet or a chair. I cried in my husband’s arms the night that he had to use a gait belt to help me stand from the bed and even then it took me a couple of minutes to start walking. I was eventually sent to the E.R. where they ruled out Guion Beret and a pulmonary embolism (clot) in the lungs. My CRP was 58, but my sed rate has not been elevated.

The E.R. sent me back to my PCP who decided to try a high dose of steroids. She put me on 60 mg/day for 5 days only, her theory being that she wanted to zap whatever virus was causing my inflammation (too bad my problem eventually turned out to be PMR). My husband says that I nearly bounced off the bed after the first dose. By day 2, I was walking without any help and feeling well! This lasted the 5 days, but on day 6, with no steroid, I crashed. My daughter had to convince the weekend on-call physician to let me have some steroids until Monday.

My PCP kept me on 40 mg for 2 weeks until I saw a rheumy. I am fortunate to have a good rheumy who treats me symptomatically, rather than relying just on blood tests. I have a great PA in the office that I see regularly and the rheumy usually sticks his head in at the end of my visit to just touch base with me.

I had a lot of fatigue initially, but that seems to have decreased or I have learned to adapt. Speaking of adapting, I cannot do without my high toilet seat, shower chair, and 2 canes that keep my gait straight. I have the terrible moon face, buffalo hump, cold sensitivity in my mouth, and some tearyness from the steroids. I cannot stand for more than a few minutes, have advanced OA in my right knee, pain in the left hip and right lower leg (both probably due to my FM!). Even with all of this, I have good days, many more lately.

I was started on Lyrica for the FM pain about 10 days ago and that seems to be helping. I was able to stop taking the Tramadol at night. I use ½ tab a couple times a week if I need to take the edge off the pain. I am finally down to 18 ½ mg of Prednisone, having had a flare-up recently and a temporary dose increase.

I am a 64 year old female, live in Colorado, USA and am very active with my hobbies/interests (which I already put in another post).

I am already enjoying the many posts on this site and feel welcomed.

2

Hello Nanattjjj Reading your post is bringing back how I felt 5 years ago, I had been in Italy and was bitten 13 times overnight  by insect or mosquitoes, don't really know, anyway shortly afterwards about a week after returning home, flu  like symtoms then frozen shoulders then pain in upper arms and shoulder are and hips, like yourself I went from being totally well and mobile to same as you describe with my husband hauling me out of bed and it was lunchtime before I was mobile, I did post on another site at that time looking for info re insect bites and was astounded at the amount of people experiencing trauma with tick bites but not many with mosquitoe bites, anyway I still think this is where my problem came from.  Presnisidone was wonderful for me and after a year I felt fine with an occasional bout of pain which Ipobrufen kept at bay.  Unfortunately just last week I have had a flareup big time and had to go to doctor, been given blood tests and waiting on results. given Presnisidone (spelling?} again 8 per day and today pain is not so bad after 2 doses, but I am dreading results as I know myself it has returned, has any other person on the site had trauma from being bitten, my doctor is very good but there seems to be nothing else but steroids, did not get the moon face and only put on 4 lbs in weight, maybe I was lucky but my appetite was increased and I felt well but....I felt so well before this Polymyalgia, just one of the unlucky ones who get it. I hope your symptoms have improved by this time as your post was 1 year ago.***

PS I had placed a 'locked finger post' a few days ago wondering what was causing it not realising it was just an indication that I was having another bout of the so very painful condition.

3

Betty thank you for replying to my note.  My symptoms began early October,  none of my test showed anything,  I suggested  Polymyalgia, etc,  Dr thought it was osteo arthritis,  I did not agree,  He suggested taking tylenol and I did this for several months with little relief from the pain and stiffness.  Finally I got him to prescribe a anti inflammatory and three months later, I am pain free and doing really well.  Still not sure what happened or what I had, but I am grateful that I am better.  I hope you will not suffer too much with this bout. 

4

Hi there Nanatjjj thanks for the reply, on 3rd day of steroids and already an improvement obvious indication it is Polymyalgia as nothing worked for many weeks.  Got blood tests back and a full blood count in one month is now the answer, hope they find no other stuff, going to see doc as only one week trial steroids was given until test result, now not sure. Glad to hear you are well as can be now. God luck and keep healthy.