As per Eileen's suggestion, I went back up to 10mgs after being on 7mgs for 3 weeks and one week on the DSNS, tapering 7/6 mgs.
I had never related to the testimonies on here about "PMR pain". My main symptoms were muscle fatigability( no pain while resting) and extreme fatigue.
Today I have shoulder and hip and thigh pain, even when I'm resting.I have also developed aching ankles and finger joints.
Could this be due to another condition or is is it typical of PMR?
I must add that I am going through the most difficult time in my life so far..my husband, whose mother and three aunts had Altzheimers, has noticiable cognitive impairment and refuses to see doctor.Ive realized he has anosognosia, he doesn't think there is anything wrong with him. He still drives and just yesterday I was witness to a very vicious, totally out of character road rage, while driving our baby grandchild to the airport.
Anyway, I'm sorry to get off subject, I'm a bit of an emotional mess right now, and I wonder if that has contributed to these new symptoms ?
The pain you describe is typical I think....that has been my experience. Times of stress have caused pain and fatigue, and even a "flare" where I have had to increase the dose of prednisone 1-2m for a few days, or longer. My PMR pain is usually in its "original" spots...neck, upper arms, groin and feet...but I have had episodes of "all over" pain, particularly at night. Sounds like your present dose is not sufficient because of the additional stress. Others on this forum can suggest the right dosage...and REST. Best to you😊
Ahh mini, I can relate to much of what you are feeling & truly feel for you.
The pain you describe, shoulder, hip & thigh I too experienced in the last year. On 15mg a day I seem much better. On 10mg a day was feeling these pains daily & feeling quite lost & wondering if this was going to be the norm from now on.
Like yourself, my hubby is ill long term & I'm caring for my mother, 87, dementia & a whole host of physical & mental health issues.
I must admit, having increased the steroids, it was my decision but I did consult with doctor I'm feeling much more energetic & able to cope, it's given me a real lift.
I'm new to PMR / GCA & this forum so not confident in giving advice atm, although there are some real gurus on here & I'm feeling very comforted!
But please know you are not alone & perhaps these are new PMR symptons surfacing? Hopefully one of the more experienced of the group could enlighten you.
It wouldn't be surprising if it did - stress NEVER makes a good bedfellow with PMR. And I really think Sars has hit the nail on the head. You are both in unenviable situations.
I do appreciate the problems both of you face with dementia and faced with the same scenario I'd be upping my pred dose - not struggling to reduce. This is not even in the same ballpark - but I've just reduced to 6mg and it is ok - just. But my husband has been dx'd with prostate cancer and we are just embarking on the radiotherapy voyage. We've been there before 23 years ago so it is nothing new, the cancer has been found early, is lowgrade and contained. But what is very different is we are 23 years older and instead of a 20 minute daunder down rural roads it is a good 1 hour drive to the radiotherapy unit, down a busy business and tourist stretch of highway. By the time we've got there, done the deed and got back we will have been underway for 5 hours. Every day for 8 weeks. There may be transport - but we don't know yet. Yesterday was the pre-tumour board MRI - traffic there was non-existent and we were there in an hour - so had to hang around for ages for the appointment and the weather was rubbish! Coming back was heavy rain all the way and a lot more traffic. Last night I was flat - and usually I'm perfectly happy to drive for 4 hours at a stretch. The whole point of me hijacking your thread like this is to say - I'm seriously thinking of going back to 7mg. At least. And my problem is peanuts compared to yours.
Mimi - have you any way of sharing this with anyone who can actually DO something? Never mind the baby - mum must have been there, how did she respond? I have no idea how one goes about dealing with this sort of thing. Has anyone out there?
Thank you for your advice, support and best wishes. I feel better already. Also, knowing that these symptoms are,"normal" under the circumstances, I feel relieved of the anxiety they were causing .
I know so many of us on the PMR/GCA forums are struggling with caring for a parent or partner, or both, like Sars. There is another expert on the healthunlocked forum, Dorset Lady ( I always wonder who she is on this forum) who lost her vision permanently in one eye, plus lost her husband during her journey with GCA.She puts me to shame when I complain but she's also an inspiration.
I will wait to see what Eileen says, but I probably will have to go up further than 10mgs.
Thank you Eileen for sharing your story.I guess I should go up a bit more, for sure.
In my particular case, as long as there is no official diagnosis, there is not much I can do, except not ride with him anymore and hope he doesn't kill anyone in the meantime.My children, all 5, are in complete denial about this. They just say that I need to realize he is 7O years old, just aging, bla, bla..
Thanks went out n a few forums on dementia caregiving and anosognosia and the only advice they give us to never contradict the patient, as what he says is HIS reality.
All I can do is try to be more Zen, meditate, do EFT tapping, try to be compassionate in order to keep the stress levels down. Some days can't cope and lose it, like yesterday Hopefully it's a stage and as the dementia progresses , he will become more docile? Who knows? The change in his personality has been spectacular.
Forgot to say, that You do feel very progressed regarding coping with him as aw months ago, I was only able to share this privately, with you, Eileen.Now I am so sure that there is something really wrong with his frontal lobe, at least, I can share it openly.
Perhaps I will get up the courage to contact an old (younger) collegue of his who specializes in dementia. Docs make the worst patients!
I think that might be a very good idea. Children are perhaps the worst - they can't cope with mum and dad getting old anyway! But sorry kids - 70 is NOT old even if it is to you.
Thank you - it's from now until the end of October, more like 12 weeks. The mills of god and all that! He's had the MRI and the next appointment will be the week of Aug 5th. Then the radiotherapy will not be until a couple of weeks later anyway - and we've requested it start on Aug 28th so we can go to an international science meeting first. A week's entertainment is our reward for spending the winter doing "The Book" - he is scientific editor of the Proceedings
We'd sort of hoped that brachytherapy might be a possibility - but won't know that until August. Too many complications!!!!!!
Mimi, can you ask your doctor for advice on this? I had to go to my mums & even my husbands doctor for help with their mental health issues. It's a long story that I won't go into but I did receive help & other involvement & they received medication after a bit of a battle.
I used psychological techniques like getting them to read about their own symptoms without alerting them why plus also having conversations about 'other people ' with them. It requires alot of thought & patience but worked for me.
Thank you , Sars, I will definitely try.This one is a tough one, he was Neurologist and thinks he is still an exert on dementia!
He has no doctors, always said he will never have surgery or be treated for anything... Don't think he even knows his colesterol, to give you an example. Ive cared for three dementia patients and none gave me sick difficulty... And we don't even have a diagnosis.2 of his friends have asked me what was wrong with him, too.
I tried telling him that perhaps it's just depression and that his cognition may return to normal if treated with antidepressants but since he thinks he has a pefectly healthy, he won't budge.
I will tell my GP, though, and a Neurologist that my us and worked with.
Oh gosh, you do have your work cut out. A neurologist? Wow he'll have a wealth of knowledge plus a stubborn nature by the sounds of it. No offence intended. .My hubby is cantankerous & knows everything 😅 😉
In all illness our stress levels impact on symptoms. What's great with polymyalgia is that we have the control over pred which helps. You have so much to deal with at the moment you can do without unnecessary pain and discomfort. I suspect that at some level your husband knows he's getting out of control, is afraid, and desperately hanging in there. Sharing your anxiety with the colleague you mention could help because he is familiar with this sort of scenario and may have good advice. Noting the incidents like road rage with the date would be helpful too, not only to clarify your mind but help others, including your children, understand your concern. You're coping pretty amazingly but you're already spilling over which means you're ready for the next steps. General advice with people with cognitive impairment that I received is to acknowledge the truth of what they see but explain that you don't see it too - you too have your truth. I think you'll get there and that his condition will increasingly make itself known, involve others and direct your course of action. You are doing so well, he's very lucky to have someone in his corner, and you are struggling with the new personality within the familiar loved one. It's tough. I do hope this works out - don't be lonely. Warmest wishes.
Sorry, and hadn't seen this.I was on a anti depressant ..maybe felt better, but it made me kind of unmotivated... Also they were prescribed by my husband whom I don't trust anymore as he has prescribed BP medication that were not compatible with prednisone and Vitamin D...I've since emancipated myself from him and he he hospital where he worked for 45 years.
I'll go to the GP, she'll suggest an antidepressant.
I just wanted to reach out and hug you. Sometimes I find with kids you just have to tell them how desperate you feel and then wait for them to see the truth. take care Jen