Hi, Beckey, welcome to the forum! I haven't been posting much for awhile, just had too much going on here lately, but I did want to comment when I saw your post.
I've had chronic pain for around 8 yrs now but a few months ago something new started going on. I started running what felt like low grade fevers with chills, at night every muscle in my body would stiffen up and just turning over in bed would make me cry out in pain, mornings were awful with my whole body hurting and my hands so stiff and they felt swollen but didn't look swollen and even opening a tylenol bottle was difficult, the way I felt was unbearable. I was on 30mg oxycontin every 8 hrs, 5mg oxycodone 3xday prn, 600mg neurontin 2xday but none of this was coming close to touching my pain.
I finally started searching the web with my symptoms a came across Polymyalgia Rheumatica and I fit perfectly. I brought this up to my Pain Management doctor and he ordered blood work along with a steroid pack. The steroids helped within 24 hrs but my sed rates came back normal. This brings me to why I wanted to post. 20% of patients with PMR will not show elevated sed rates with me being one of them but the good results from steroids is a good indicator that it is in fact PMR.
I did see a rheumatologist last week for this because my PM doctor just didn't seem to be up on PMR and I wanted to make sure I had someone that was knowledgeable to handle the steroids since they can cause alot of bad side effects to the body. The rheumatologist also dx'd me with fibromyalgia. I've always had severe muscle spasms all over my body but never thought of them as tender points of fibro.
Be very careful with the earache, any headaches in the temporal area, or jaw pain because this could be GCA (Giant Cell Arteris) sp? This is a very serious condition that some people with PMR can have. The two tend to co-exist together. GCA can lead to strokes or blindness and needs to be treated immediately. The UK seems to have more information regarding PMR & GCA so if you type in Polymyalgia Rheumatica UK when searching the web you may get more information.
What is your age? PMR normally doesn't show up in people under 50 with the average age of 70 but there is a forum that I've been to that has members younger than 50. So this statistic is not a gimme.
I hope this information helps. I do feel for you because if it is PMR that you have it is horrible. The pain I was having was worse that what I felt after my lumbar fusion surgery and that was bad. At least with the surgery pain you could take your pain meds, lay down and go to sleep but with the PMR just moving was a nightmare and nothing helped.