Hello all! I've been lurking since my GP suspected PMR on Thursday and sent me off with my first prescription for Pred.
Looking back I've been on this road for the past two years but have been putting each new ache and pain down to other causes, however, as they stacked up life became pretty horrible and I found myself with pain levels and all those other symptoms, that had become increasingly intolerable. This found me on the doorstep of my GP on Monday morning and I have to say they've been great, I think they had this in mind straight away but waited for test results to come back on Wednesday afternoon.
I noticed a tentative improvement within 24 hours of my first dose but am keenly aware of the effect of wishful thinking so truthfully I I'd have to say that today, day 3, is the big day. The one that has brought some long awaited relief, but also probably confirms the diagnosis.
I know now that I'm going to be with all you lovely people for a while and I'm pretty sure it's going to be a long journey, that said I'm strangely relieved to have a diagnosis, something tangible to research and educate myself about, something I can fight (know your enemy!)
So, today starts a new chapter, one I hadn't planned, but hey ho that's life, right? My dear hubs has a really irritating saying "what doesn't kill you makes you stronger" let's hope so eh?
Today I walked without my stick!
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Funnyoldworld
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Well, it is a Funnyoldworld! 😉
I was a Day3 Girl too but it kept improving even after that & by day 10 l was back in high heels!
Please rest now, just because you feel better, remember there’s a lot going on, the Pred merely dampens down the inflammation.
Good. It's very tempting to overdo things once the pred starts kicking in...
Yes, I am sad you have PMR but hopefully being kind to yourself will help as much as pred. I don't know why but I find it funny too. It's the fact that my phone chose it. 😂😂😂
Thrilled you’ve got a firm diagnosis AND some relief from the horrible symptoms. Diagnosis is a welcome relief and gives us a good starting point to become educated and self-aware. Knowledge is power and helps us manage these conditions as best we can. You will find out a lot about your mind, body, and spirit on the journey, and we’ll be right here for you if need be.
Bask is the relief from the aches and pains, but as mentioned, don’t jump back into too much activity. Easy does it.
There's so much more to life than cleaning! My passion is quilts and it will be nice to have enough energy and enthusiasm to head back for some sewing therapy x
Me too!. I've just started crocheting again, it has been too heavy until now, and now nothing is safe from getting a crochet cover. Start with some small simple sewing. Good luck.
Thank you, I gave it to him to read earlier today, we'll work it out I'm sure, just have to realise this will change both our lives somewhat. I know it's been really hard for him to watch the last few weeks but the difficulty will be as I appear to be 'better' that we don't just think it's over and done with and revert to helping everyone else before ourselves. It's going to be challenging for sure x
Thank you, it's a very welcoming group. I already feel better knowing that there's people out there who know, without me having to provide a blow by blow account, of how I might be feeling. To be fair this time last week I knew nothing of this and was in a dark and sometimes lonely place. X
Hi Funnyoldworld. Like you I was in that lonely place, having been diagnosed with GCA in Feb. It was not until I found the forum that I realized other people were suffering the same feelings as me. Everyone has been so helpful and supportive. Now I can fight this condition with more determination, especially as I know I am in for the long haul, helped by supportive hubby and sons.
It's nice having a support network here and quite honestly I feel that I've got a new 'tribe' who get me! PMR is a great leveller and if there's any kind of up side it's knowing I can come here night or day and have commonality with strangers who know me better than some of my friends do at the moment. It's been a momentous week! Xx
Nice to hear from , it's lovely to meet new Faraway Friends on the Forum , especially with what looks like a good sense of humour and positive , realistic, attitude to trying to fight PMR , these characteristics will serve you well.
I have always found that when a member of my family or a friend ( as I do try not to hit strangers!😋) say ,
" What doesn't kill you makes you stronger! "
A good strong kick in the shin followed by the question , " Do you feel stronger yet ?!!" as I stare at them rolling in agony on the floor does the trick , you never know it might work for you too!!😋😁😂😂😂😂
Hi Blearyeyed! Sometimes the urge is strong! To be honest it used to drive me mad but as I've got older I've realised it's just another coping strategy, it allows him to process stuff at a more considered speed, me, I'm more of the explosive type!
Doesn't mean I don't grind my teeth a bit sometimes!
Read the book today! Very informative! I'll probably reread it at a steadier pace in the next few weeks, processing a lot of information these last few days.
Glad you read it - stay positive - I am well on 10mg of Pred and reducing - I will reread book too
Hi Funnyoldworld, and welcome to the trip. I thought your introductory post was thoughtful and very positive. I spent 3 years pre diagnosis putting it down to age, arthritis etc, and like you reached the point where walking was difficult. So the relief from steroid, within hours, was amazing. The years melted away.
There’s no doubt that it’s a life changing disease. If you’re used to being active, it can be difficult adjusting to doing far less. It’s taken me many months to better understand limitations and as DL said, learning to say no, even if it’s in my head. Quilting should be great!
Kate Gilbert’s book was my first stop on diagnosis and it’s on kindle. And this PMR forum is a constant source of information, advice and support. Best wishes for your new lifestyle.
Thank you, this forum has to be one of upsides of the condition, it's all so interesting and everyone has been welcoming and so supportive. I appreciate all of you! X
Welcome to this amazing helpful group. Sorry about PMR though but now you know what you’re problem is you can deal with it. Glad you are feeling better.
You sound like a person that can handle this - one day at a time. Positive energy is important. Isn’t it great to feel relief already and to have this forum? Hope today is even better.
Welcome to, I have to say, the best and informative forum around! My suggestion might be Kate Gilbert's book PMR and Giant Cell Arteritis: a survival guide, as others suggested to me. First of all be kind to yourself, process info and then when you are ready get the book, it is a great resource and explains so much! Thank you again to this forum without you I don't know where I'd be, probably still 8 mths behind in understanding PMR! These days I am feeling okay with my diagnosis of PMR, maybe I don't understand it all yet, but knowledge is power and moving forward one step at a time each and everyday positively is a good direction to go!
Thank you, I think I'll get the book sometime this week. It would seem there's much to learn but there are some lovely people willing to share their knowledge and experience here. I think the personal stories and advise give a much broader picture than the 'purely medical' information I have read, it also makes it clear that everyone is different, we're not all going to be exactly alike and neither will our experience of the condition, that in itself makes it more real but also less scary.
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Looks like it's not GCA but possible PMR
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