When is your worse time of day with PMR?

I’ve had to break it out and map it on the body, because the feels are really unique in their debilitating nature. The WORSE was hip girdle pain so bad unable to sit down, with no relief. Went to ER where a full cavity search was performed, revealing nothing at all. So no medical explanation PLUS pain was the WORST BY FAR. That was just prior to a full blown GCA attack, for reference. Since treatment, PMR feels more generalized. It is nonexistent when on steroids. Even with Actmerya, vaccinations kick it off where sickness keeps me quarantined and bed bound for a few days. . Between shoulder blades pain can be kicked off if attempting to carry too much weight. Hope this helps.

When my pain started, and before I was diagnosed, the pain would start in the night. I would be sleeping on my back for a couple of hours. When I tried to roll over, or get up, I would have terrible pain in my shoulders. There was some in my hips but the top of my shoulders was the worst. Nothing helped the pain. I was first put on a prednisone pack--what is it 5 days? Start high and taper each day. Pain went away on day 2. The pain stayed away for one week after I went off. Then is came back with vengeance. I really suffered rolling over in bed and had to plan how to get out of bed. It got so bad I couldn't raise my coffee cup to drink. Visit with rheumatologist, put on 40mg prednisone, tapered to zero over 14 months, pain returned. I was put back on 4mg and am now on 2mg. Waiting to see what next. My pain has always been like it started. After being in one position at night it starts. After I get up it takes time for it to go away. At the worst it would not get better until about 4:00. I would have to wait until then to do some things like wash my hair. I couldn't get my hands above my head. I did hip stretching that helped. I used resistance bands to help my shoulders but at the worst times that wasn't enough for my shoulders. I noticed pain on the top of my shoulders which seemed weird.

@csimmonds I had a similar experience where I experienced a lot of discomfort when I was in bed at night. I had PMR at first, where I would feel a lot of pain when I rolled over. At times I would debate with myself whether it was worth the pain to roll over to get into a more comfortable position. I had a lot of trouble dressing, especially putting on socks and shoes and getting my arms into shirt or coat sleeves. I also had a lot of stiffness in my neck, and that made driving difficult at times. After a few months, I also developed GCA, and that made trying to sleep even worse. I had a lot of pain in my cheekbones and also around my ears. I sleep on my side, so the pressure of the pillow against my face and the side of my head was really uncomfortable. I took a lot of arthritis-strength Tylenol during that time. Once I started treatment (60 mg of prednisone per day and weekly Actemra injections a little later), all of those problems went away. Then my problems were all side effects of prednisone.

I am sorry to hear how your PMR advanced to GCA. I worry about that but so far am ok. My shoulders were my worst enemy. Sounds like we share the experience of bedtime pain and making the decision roll over and making a plan on how to get out of bed. I remember having to use one arm to lift the other. Reaching in a cupboard was difficult. Be glad you didn't have to put on a bra. I remember the agony of putting on shirts and coats. I was on Tylenol constantly. I am better now and hope it stays that way. PMR is such a strange disorder. I hope you improve. I know it can happen.

@csimmonds Thanks. I finished taking prednisone more than a year ago, and I take an Actemra injection every other week. I'm not having any symptoms or medication side effects except for a little fatigue around the time each Actemra injection is due. I'll have to monitor that and see how it goes. I'm glad you're better. PMR and GCA are both a lot to go through.