When I went back to the Dr. everything clicked with him, he said he thought it could be PMR and sent me for blood tests, which showed up the inflammation and I was referred to a Rheumatologist.
So there we go, started on 40 mg Prednisone, and within two days, was feeling sooooo much better, another confirmation of the diagnosis. I then had Methotrexate added to the mix, along with Folic Acid. I was already taking a Calcium supplement, but that was increased. Dropped down the Prednisone over the next year or so, and now down to 6mg and 5 mgs on alternate days. Methotrexate at 17.5mg per week. Also now have to take 2 Losec daily for heartburn, and recently has put me onto 2 Plaquenil daily, 5 days per week. Shake me - I rattle!! And I wake up 5 or 6 times every night. And I get the hots too!!
I thought I was doing really well, but the one thing that puzzles me is this. I do not have pain in the mornings now. I wake up now almost every morning, thinking it's all gone away. But, throughout the day, as long as I keep moving and doing, I'm fine. Then when I sit down at the end of the day to watch a bit of telly, or read a book, zing!! I feel awful burning right thru my arms & legs, right down through my feet and into my toes. And then when I get into bed, it's even worse. No stiffness, not my joints, I can move very freely, still seems to be confined to my muscles, and only when I am sitting or lying down.
I mentioned this to my GP the other day when I was there for 6 monthly check-up, and he was puzzled about this. When I described what was happening he mentioned a possible Vitamin D deficiency, (something that seems to be appearing more and more in these days of using sun-blocks, especially here down under, where we have a huge hole in the Ozine layer, and a very short burn time). So I've had an extra blood test this month, for possible Vitamin D Deficiency. Interesting! He said, if it is that, a quick fix, 1 tablet per month! Another to add to the mix!
Anyway, to cut a long story short (NOT) I ws wondering if any other of you have this burning sensation when at "rest"? I haven't seen a mention of it on here - so would be interested to learn if anyone else has this problem.
I feel like a bit of a wimp really, cos I feel so well most of the time now, except for this one problem. Everything else seems to be under control, if only through all the horrible drugs, but hey, it's 1.30 in the morning here, and I don't want to go back to bed cos I know it's going to start up again. Probably asking for trouble doing all this extra typing as well, Golly - I've just about written a novel!!
Funny thing too, I've never had a really high sed rate, most of the time since I started treatment it's been around the 30 mark, although does shoot up from time to time. I have blood tests 1xmonthly, and am now on 5 monthly Rheum. visits. When I read most of the posts on here, you seem to be experiencing so much more pain than I do now, and I really feel for you. But I would be really interested to know if anyone else is suffering from this burning at night.
Thanks for taking the time to read this saga, I do enjoy the positive vibes that come from you all, and how supportive this community is to those who have questions, or just need to spill it all out.
I just read you post where you mention having burning pain in your arms and legs. It is the first time I've seen that symptom mentioned. I have a burning pain in my lower arms and lower legs most days. I just hadn't connected the burning sensetion and the PMR. I seem to get burning pain when I am trying to go to sleep most nights. I guess there are all sorts of different types of pain associated with disease and we just learn as we go. It seems like I learn something new every time I look into this Board.
Hope your day is good and you are able to sleep better real soon,
Have a lovely day
Jeanne in NZ
I also have burning pain in my feet legs and buttocks, also a lot of pelvic pain, which no dr. can explain...................Jeanne:
The burning type pain- sounds like it could be 'nerve' type pain. Have they ever tried Neuronitn for your 'burning' pain?
It is an antiseizure medication originally- but is used very successfully for 'nerve' irritation type pain- such as burning prickly type pain.
I am a nurse and have seen it work well.
I too have PMR but pain such as you describe has not been a problem. I do have burning and some numbness in my feet at times which may be peripheral neuropathy.
welcome to the group-
Rosey