why is my pain so much worse on some days, or nights? I take my prednisone at 10 pm in a delayed release capsule.. Most nights I sleep fairly well, but 2 or 3 nights out of the week, I wake up around 3 am with my neck and shoulders in terrible pain. When that happens I take .25 mg of alprazalom to get back to sleep. Right now I’m tapering and taking 1 mg in the morning and 5 at night. I was trying to do the DSNS plan since the middle of December (5 1/2 or 6mg a day).
I’m also having pain again in the same areas as when I broke my tailbone back in August (for no reason)Don’t know what’s causing that.
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Aqua47
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Looking back at previous posts, there seems to be a comment thread which indicates you haven’t really got your PMR under control. We have said on a number of posts ease up on the tapering… and that’s for a very good reason. You seem to be consistently going below the dose your PMR requires.
As for current question, if you keep a diary of daily activities you might see there is a valid reason for why some days/nights are better than others.
There is little point in ploughing on through, you need to get your PMR under control, and then keep it managed.. if that means a slightly higher dose of pre then so be it.
Without having looked at DL's reply - I was about to say it sounds as if you have gone below the dose your PMR needs at the moment.
We have said repeatedly - ease up on the tapering. That doesn't mean slow down if you already have pain. It means go back, get the pain under control and DON'T taper any more if it means the pain returns. The whole point of the pred is to control, manage, the symptoms while you wait for the underlying autoimmune disorder to go into remission. If you try to go lower than the lowest effective dose - there will be leftover inflammation which will build up until it causes symptoms again.
There is only ONE answer - take enough pred. With one codicil - if activity results in more pain, moderate that activity. The bad days almost certainly relate to doing more than you should a day or two earlier - and the good days are because you had rested or done less because of a bad day. And there is only one person who can sort this out - YOU. You need ENOUGH pred consistently and make sure you pace properly/
Thank you PMRpro and DL for your replies. I guess I knew deep down that my problem is not enough Pred. Christmas was a little stressful, since my daughter and her family come for a few days. They live over 400 miles away, and you can imagine that I have a lot to do, to prepare for 4 extra people in my house. What regimen do you suggest for me to get this under control? I feel under some pressure from my rheumatologist because he wants me to keep trying reduction of 1 mg per month. I’m really not worried about what he thinks, because he just doesn’t feel my pain. According to him I should be on 2 mg now! Not possible!!
Use the flare protocol we talk about a lot. Add 5mg to the dose you are flaring at - so 6+5, 11mg, for at least a week and up to 2 weeks. Then drop back to the last dose at which you were good, probably 7mg if that is enough. But you will have to see. This is the approach that Prof Quick in Luton uses - if it is good enough for her, it is good enough for your rheumy!! And he must bear in mind you had an injury that caused a flare - not that you haven't tried.
You also have to learn to say to your visitors that you can't do all you used to, they will have to help out. If I can't time it for the cleaner to do it, they can help make the beds. When mine come - over 1000 miles - it is simple food or we go out since they want to eat pizza and the food they ate as children in Germany. Or the pizza is fetched from the village. And they muck in too. It is being together that matters - not that YOU waited on everyone else. I learned that many years ago when we lived in Germany. Just as well now - a mix of meat eaters and vegans is not the easiest to cater for!!!!!
Thanks so much for the advice. My daughter and son (he lives fairly close) do help out with preparing food and all cleanup. But I guess I just don’t want to give up what I’ve always been able to do. I will try the extra pred and let you all know how it goes.
"But I guess I just don’t want to give up what I’ve always been able to do."
And there is the truth of it - and almost everyone is the same. I say almost because, being inherently lazy, I'm only too delighted to be able to hand the work to someone else!!! It is a massive step to take to admit we are older and some things are just too much - and PMR and pred add to it.
As they live away from you they probably don’t realise how difficult it is for you.. but you have to tell them. or they never will. No need to be a moaning minnie, but just say you look forward very much to seeing them, but they need to be more helpful whilst with you.
As I replied in another thread recently, you need tell family what you can and can’t do… and they [hopefully] will understand.
Actually my son cooked our meats, and daughter’ and daughter-in-law made side dishes. I made only one side dish and purchased desserts. I really didn’t feel tired, I think I just wanted everything to go smoothly, and I still feel like I’m responsible for everything. I’m only accustomed to just my husband and myself in the house The grandchildren are older now and don’t stay with us anymore. When they were younger, they were here every chance they got. I’m older too, of course!🤤
Yes I know now. This was my first Christmas with PMR. I actually woke up the morning my daughter and her family were leaving after our Christmas celebration last year, with my first pains of PMR. I had no idea what was wrong with me. Little did I know then!!
I do understand the dilemma. A year since diagnosis myself and I’m the one in the family recently who looked after my 2 year old grandaughter for 3 weeks due to my daughter’s wrist surgery - no one else to help. I’m now visiting my 93 aunt today in hospital with a view to helping her transfer to a nursing home as her son is in New Zealand. Oh and a daughter’s wedding in 10 weeks to be involved with etc! My daughters’ are understanding of PMR but it’s hard to step back but with a recent flare I know I have to slow down. I think a lot of us with PMR have been active physically and in life. I’m still running a small business too. Weird why we should be the ones to get this! I’ve been offered Methotrexate and am just researching.
When you are used to peace and quiet and your own routine, even one person in the house is a disturbance and very tiring on top of a chronic illness. When my FIL had a heart condition, we used to stay with friends or a B&B nearby and visit and he was so much better because HE took the responsibility of cooking lunch and dinner. We told OH's brother - but he was too mean to pay. They took a chalet at a caravan park once - the daughter announced to Grandma that it was where "poor people had holidays"(wrong darlin', poor people don't get holidays) and they went back to descending with their rigid timetable of "biccy drink time. We arrived at his place once, invited to call while passing, after a month camping and a long drive, and were informed that at 11am we had missed biccy drink time. And we had to wait until after lunch for a cup of tea!!! Strange people!
But I have several friends whose families do something similar - stay nearby and visit. One, recently widowed, admits that she finds even that tiring now she is used to being alone.
I find that pain is often hard to reason with. So many things can affect it including amount of exercise, what you eat, etc. I have an overgrowth of bacteria in my small intestine. My discomfort was written off as symptoms of my Sjogren's Disease, age, diet, etc. I was doing the prebiotic and probiotic thing, gluten-free, lactose free, corn free, etc. without much effect. I still had so much gas and bloating, burping and hiccoughs. Now I'm doing a naturopathic treatment, SIBOtic, while all but cutting out sugar and trying to follow the FODMAP diet (so difficult!). I feel oh so much better!! Just got a note off to my Naturopathic MD asking how long I'll have to keep this up. But it just goes to show that we are wholistic beings and need to consider a range of influences.
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