I thought I was doing so well managing to slowly slowly reduce the prednisolone right down to 1mg. I really thought I might beat this disease into remission this time especially trying an ‘anti-inflammatory’ diet with blitzed berries in the morning and fresh gazpacho at lunchtime but alas as time has gone on I’ve realised that afternoon naps are back as a permanent fixture, that the feeling of wading through porridge is ever present. I got my blood test results back yesterday and my inflammation levels are 50% higher than they were at the start of this journey 3 years ago when I was finally diagnosed with PMR. So it’s back up to 5 mgs to see if that helps. Frankly I’m disappointed and I have to be careful to hide my low mood from friends and my other half. He is a very caring individual but who wants to live with a moaning Minnie 24/7. I’m not sure whether the ‘can’t be bothered ‘ attitude is totally the fault of the PMR really as I still get caught out by grief over losing my mother although that was three years ago. On the other hand, I remind myself to count my blessings that things aren’t a lot worse than they could be. Lots of people on this site having to cope with a lot more than I do. I just recall that in my early 50’s I felt like I was 30, climbing mountains and running half marathons and then at 55 I started to feel really old and creaky. I hate not having any energy any more and it goes on and on. It’s so frustrating that there aren’t any real answers to this issue and I know many of you may feel the same.
Inflammation levels raised again: I thought I was... - PMRGCAuk
Inflammation levels raised again
What blood test? ESR in particular can be caused by many things not just PMR -and really needs repeating to make sure it’s not just a blip.
Just an example of what can cause higher than normal readings -healthunlocked.com/pmrgcauk...
..and you can’t beat PMR into remission -unfortunately!
Would say your issues sound more adrenal related -have a look at this as well -
healthunlocked.com/pmrgcauk...
It’s the CRP levels that are up. ESR is normal and always has been. I think you may be right about adrenal levels as when I have things to do, an appointment say, I do feel more upbeat. But I don’t know how to get them to work harder, except by maybe eating a chilli at breakfast or stabbing myself with a pin !!
Sorry - I should add that I just read those articles you kindly sent. I am a bit overweight - maybe that would help
Have you ever sought bereavement counselling? Maybe your mother and PMR together has been too much of a loss.
And I fear there is only one way of "beating" PMR: patience. You can influence how you feel with diet and stuff and get to a LOWER dose of pred - but it will only help to some extent, it won't mend the dripping tap of inflammation - you have to have patience until the water supply runs out ...
I had a session of pre-bereavement counselling as my mother had the hospice at home service at my home for 18 months. She did really well even whilst going downhill and we had many happy outings during that time. The pre bereavement session I mainly just howled my head off ! As I still would now. The dog bears the brunt of it these days. We go to the woods and I have a sniffle so that I can come home wearing my ‘happy’ face. I have considered more counselling but apart from taking up the time of these professionals I’m not sure what it would achieve. I am fully functioning but just have to keep a hanky in my pocket for unexpected leaky eyes. I’ve counselled myself in the woods, I know that I was so lucky to have such a strong bond with her, that I couldn’t have been more loved or better supported, she would have been so worried by covid that I’m glad in some ways that she didn’t live to endure it. Grief is the price of such love. I’ve read that around 4-5 years is an average time to process profound grief so only a couple of years to go ! In the meantime I guess it’s keep busy and keep taking the tablets ! But thank you for the suggestion. X
Will pm you
I’ve just had my adrenaline fix for today! I came downstairs accompanied by faithful hound to find there was a large wood pigeon strutting round the kitchen. Bert hates pigeons ever since one pooped on his head so what ensued was a race around the kitchen to stopped frenzied dog eating large pigeon. Much flapping, shouting and woofing ensued and after it got stuck behind some pans etc we finally got it back out the door, missing a few feathers but otherwise unscathed !!!
Hope you’re not the missing a few feathers😳
Hmm - I have very mixed feelings about rats with feathers ...
I declined it pre-bereavement and initially afterwards for exactly the same reasons as you give. But eventually I did accept the offer - and I am so glad I did.
It sounds like you have done really well getting to 1mg. I have very high inflammation markers, however I feel fine. It is how you feel that is important. I am sure that one day you will be back to the active person you once were before PMR, it just takes time.
Thank you piglette for your sympathetic response. I can’t imagine ever climbing a mountain again I suppose because it’s been 11 years already and I’m now a pensioner. I seem to be losing my muscle tone now as part of the ageing process. But I’d be happy enough to be pain free and have a modicum of more energy. Less fretful too I think. I’ve upped my dose now and I’m sure that will give me the boost I need. I suppose I’m just frustrated that this illness ploughs it’s own course no matter what you do.
I find that I am nervous to try and do things I used to do as well. I suppose Covid rather limited things too.
It did - but once you have to try something, it feels fine. I drove for over 6 hours on 2 days last week, to Treviso airport and back. Having done that I have far less concern about heading for the UK - a couple of nights on the way makes it comfortable. All I need now is a passport ...
I was the same with swimming. I was worried about the walk from the car park and getting in and out of the pool. I managed to get a passport quite quickly while everyone else was complaining about it.
It is nearly 2 months already - it arrived in Durham! Which I suppose is something ...
Getting closer. Ten weeks seems to be the average.
Up to 4 months it suddenly said - 2 weeks before it had been 2-4 weeks! And longer than 4 months if you are applying from abroad - and we are the people who need it most urgently!
Please don’t think of yourself as a moaning Minnie. It’s tough. However I don’t tell my hubby most of what I feel and many a time have jumped up from my nap and pretended to be tidying the bedroom. You DO sometimes feel a burden but you’re not well and it’s not your fault. I cried in the garden last night in front of hubby cos I’m fed up of recent pains. He made me a brew and I felt a bit better. Be kind to yourself. ❤️
I think this group is great - comments like yours as most people really don’t have a clue of what PMR is all about and there is sometimes misplaced sympathy ( ‘ be more demanding of yourself ! Give this or that a go ! Come canoeing ! Come paddle boarding 🙄) but little real empathy. I’m sure many of my friends think there’s not much wrong with me mainly because they only see me sitting in a chair at book club or at a dining table - if you ignore the grunts as I get up. But this forum is a place where people do understand. I understand your tears too. Par for the course. I’m hoping an increase in my steroids now will build more resilience even though I was trying to do the opposite - ie reduce them for the last 6 months. I can try again later. Hope all goes well for you. Incidentally my doctor is suggesting I try a little HRT which did help last time. Not something for you ?
HRT not been mentioned. I might bring it up! Yes you’re right about the group. I come here every day with my morning brew. “Come canoeing!” Has made me laugh out loud. My friends and family know that “come shopping” might get a NO 😂💔
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