Intro - new to this excellent site

[PiersC]

Hi Everyone,

Intro time. 58yo male, living in Australia (Sydney) and 'contracted' (or whatever) PMR about mid May following a shoulder operation in February and a 'perfect storm' of silly things - travel to Adelaide and poor bed/sleep, unaltered evacuation exercise (walked down 27 floors whilst still de-conditioned from the op) and a few stressors to top it off. The pain and discomfort was something else - sleeping, showering, dressing, basically everything was so damn hard. I got lucky though. I am in the military (RAN) and the doctor took one look and said PMR - you've got it! Blood tests (CRP 27 : ESR 29) then 25mg Prednisalone and that was an instant god-send, what a relief, and a bit of a confirming salvo for PMR. Next stop rheumatologist who confirmed the diagnosis, as much as they are willing to do, and I am now on the journey. I have been reading all the posts on this site, and the replies and a few comments, for what they are worth from a newbie:-

1. Great site - I bought the e-book by Kate Gilbert - compulsory reading. Not using incomprehensible doctor speak, but plain, good straight forward education and advice - great start.

2. Gaining knowledge is vital - this site is a fantastic source - the depth of experience from users is invaluable in knowing you are not alone and forming an opinion on treatments, side effects and the path of illness - they do not all count for each case, but forming a comprehensive picture is really smart.

3. Other items - I am starting on a course of MBCT (Mindfulness Based Cognitive Therapy) - using an e-book and recordings. For MBCT - read meditation, alternative pain management is the reason I am doing this - try to help me and the prednisalone along - we will see how that goes - good so far - I am mentally in a better place!

4.Remain positive. I have this PMR - it is unexpected and unwanted - but no use dwelling on the how and why, time to manage the illness and the side effects over the next months/years and maintain work life balance and a good mental outlook.

Well, that is me - I have been reading all your posts for a couple of weeks now and thank you, seriously - it does help to know you are not on your own!

All the best

Piers C

Sydney Australia.

[Celtic PMRGCAuk volunteer]

Welcome to the forum, Piers, although I'm sorry it's a diagnosis of PMR that has brought you here. However, it sounds as though you have very quickly got your head around accepting that life may have changed for a while especially by taking on board such things as Mindfulness. This was the subject of a talk by an excellent guest speaker at one of our recent PMR/GCA support group meetings. She mentioned how pain results in a drop in overall fitness and flexibility and the ability to carry out ordinary tasks of daily life and stressed that we must remain as active as possible to stop suffering from a range of secondary problems, with the emphasis being on the quality of awareness of the movement rather than building physical fitness. She advised starting small, always gentle and mindful....being kind to ourselves. So stay positive and enjoy your course.

I'm glad you've got Kate's wonderful book (she has now brought out a second edition). I would have loved to get my hands on such a book when I was diagnosed some 10-11 years ago now, but sadly there was nothing available in those days.

I do hope you continue smoothly towards remission, but slowly slowly with those reductions is key. If you haven't already done so, do get both the ESR and CRP blood tests repeated before reducing from your starting dose.

[PiersC in reply to Celtic]

Thanks Celtic,

I have had two bloods (the first the day I started pred - so a start point), one about week later (headaches and a trip to Sydney Eye Hospital as a precaution) and I have a set planned for 7 July before the Rhumy appointment the week after. I started on 25 mg pred for 16 days, now half way through 20 mg before going to 17.5 mg in a weeks time. I think the man wants a fairly rapid reduction initially, so I shall see how that goes because so many of the lessons from the site are about slow and steady and horrors of relapses. I have been monitoring the pain and symptoms via a 1 to 10 scale and definitely noted an up-spike the day after I reduced 25 to 20. Early days!!

All the best

Piers

[Celtic PMRGCAuk volunteer in reply to PiersC]

Piers, it isn't unusual to experience what you have termed an "up-spike" immediately following a reduction - that is simply down to the effects of steroid withdrawal. However, if symptoms start returning rearing their ugly heads again a week or so following a reduction and continue to build that is more likely to be signs of an impending flare. With any luck, you won't experience the latter.

[DorsetLady PMRGCAuk volunteer]

Hi Piers, and welcome,

As Celtic says you seem to have approached this illness with typical military fortitude (late husband in UK Armed Forces for 22yrs and I worked for military all my working life, so I know where you're coming from), and that's good. But you do have to let your gentler side come through as well, you cannot route march yourself through this illness, yes you need to continue to exercise, but not too extremely, and you do need to pace yourself at times, probably something you're not used to!

Will be interesting to see how you cope, as you are younger than lots on here, and as you've probably read, as a make in the minority.

As you've only just joined, I won't mention the Rugby! 😉

[PiersC in reply to DorsetLady]

Thanks DL, I am backtracking posts on the site and getting so much out of it. I am having an issue with fatigue and feeling a bit dis-connected already (or is that natural?) and I am going to start again, this time with a pad and pencil and track where I have been and what I have learnt. Your comments are most welcome (other than the rugby of course - what a horror!! Ah well - Ashes soon - but maybe I better not make dumb comments like that - the McGraths/Pontings/Warnes are all gone now!!!)

Kind Regards

Piers

[DorsetLady PMRGCAuk volunteer in reply to PiersC]

Hi Piers,

Yes unfortunately the fatigue can be caused by the PMR and the Pred, so a double whammy! And most of us get the Pred head, as I referred to it at some stage or other. Some days you just can't concentrate, it's like your body being in one place, and your brain in another universe! Still as long as you don't have to make a major decision that day, most of us seem to cope.

It s a good idea to keep notes, useful for looking back in the future to see what effected you, when and why, and maybe not making the same mistake.

Let us Brits enjoy the rugby results whilst we can! Mind you, cricket teams not looking too bad either. 😉

I'm sure you'll bounce back - you always do, but that's what good friendly (!!) rivalry is all about isn't it - whether it be the oval ball or the little round red one. We met some great members of the Australian Army when other half was serving - great banter over an English summer barbee and a few tinnies.

Take care.

[bunnymom]

Welcome to the journey Piers, glad you received a quick diagnosis. I did as well and am grateful for that. I am slowly changing my thinking that this would be a short stint to going the long haul but sounds like you may already be there, Best wishes and easy does it😊

Ready

[markbenjamin57]

Welcome Piers, from the UK.

I think you've got things taped! The forum is an excellent source of advice and support, and a bit of fun as well. It helps when the PMR / steroid tapering process isn't going quite to plan...

Best wishes on the journey, and it's good to be in touch with the relatively few male sufferers here.

MB

[PiersC in reply to markbenjamin57]

Thanks Mark,

Early days yet and plenty to think about and understand. I am using this site for a lot of background and study (and I also enjoy the banter and funny bits as well!) I have given myself a task to backtrack through posts to get the most out of them - I have a few of yours to go yet - that will keep me out of trouble for a while yet.

All the best

Piers

[birdwatcher]

Hi Piers,

Welcome to the group it's good to have you on board. Your PMR appears to have hit you at approximately the same time as mine started, about March, although I got diagnosed and have been on my 10 mlg of Pred for the last 6 weeks. That was possibly a bit of a low dose for me to be started on. Most people seem to start on 15 or so. Anyway I'm trying to manage on the 10 mlg at the moment. I do have some stiffness and pain in the morning up to about mid day. In fact to day my right shoulder is very sore. The Rheumy says, after looking at an ultra sound scan that I have bursitis, so I'm not sure if this pain I'm experiencing is the PMR or the bursitis. What was the problem with your shoulder, and is that sorted now? You seem to have a good positive approach to the whole thing, and I 'm sure that's going to help you get through this, but as the others say, take it steady and be gentle with yourself. The advice and help from this site has been invaluable, these people really do know what they are talking about. I can't say it enough thank you all so much.

I have managed to carry on with life without any major changes (up to now) but then I am retired, so no big work demands. When I do any PT I am definitely operating at 50% of what I was doing. Anyway I won't go on to much at the moment . Just wanted to welcome you here. I really hope you get through this quick and easy. If you want to ask me anything at all about my experience, or just shoot the breeze, please be my guest. You take care.

Ron.

[PiersC in reply to birdwatcher]

Thanks for the welcome Ron,

The shoulder was an operation to repair damage when I went from one deck to another on a destroyer in the south China Sea without using the ladders - even lost the brew I had with me! The op (a three part thing involving the AC joint and the bicep) went really well, and now I have a little stiffness occasionally but the stabbing pains are all gone. Nice. The bit after was a combination of self inflicted and external factors. I had to lie low for maybe 5 weeks post-op to allow the bicep to connect to a bolt in my arm - no worries with that, but the physio connected on me being 'de-conditioned', which I can understand. However I had to fly to Adelaide for important work and did not sleep or travel as well I normally do. The day I got back there was an un-alerted evacuation exercise from the 27th floor of the building and I walked down those stairs and 'felt' something (quite a bit actually) in the back of the thighs. It simply got worst from then, that was mid-May (the exercise was Friday the 13th!) and I seemed to be going downhill fast from that point. Even with physio I was not improving and simply thought it was the lack of condition and not doing enough work on rehab myself - so, push harder to get through - that will sort it out. Umm. It was my physio who took one look at a follow up appointment and picked it. Straight into sick parade and I heard the PMR for the first time about 20 minutes later. That was the end of May and it has been a whirlwind of appointments and tests and settling in to what looks like a long ride. I am so early in the process that I think I still have a way to go with working out how this is and will effect my life. I am really noticing the fatigue (I go for about 4 hours then have to have a 30 minute rest) and in the last two days have noticed a bit of a wobble occasionally. Not enough to fall, but just a bit of a gyro topple that is disconcerting. I am definitely feeling 'disconnected' - my mind is quieter - sort of settled and not working at full speed. I am hoping this is because I am still on 20mg of pred (and on that for another week until a reduction to 17.5mg on Thursday next week (20th June)). It is odd enough that I have taken to carrying a notebook. So, I hope that eases when I get down the dosage level. One thing I will say is that I will not be rushing it. This site has a heap of advice and lessons learnt from real cases and people who know the story - I am really taking baby steps at the moment and not doing the damn the torpedo thing and rushing it.

As to work. I enjoy what I do (Safety for the RAN Submarine Fleet) and want to achieve a few more things - I have/had a master plan to get out at 61. I hope to stick to that and so far have great support in that. I suspect, from the reading I have done - that while I am these 'higher' doses that the pain/fatigue is more than manageable and it will be the hard part when I get to 10mg and try for reductions. We will see!

I noticed as well we are about the same age/situation, so I suspect we will be seeing more of each other on this site!

Kind Regards

Piers

[birdwatcher in reply to PiersC]

Hi Piers,

Thanks for your informative reply.

I have loads of admiration for those who like you serve and protect, in the armed forces, so big respect to you for that. One of the things I have noticed in the last couple of weeks is a very slight hand and finger shake, I don't know whether that's the steroid or the PMR affecting the muscles. I think I'm going to ask PMRpro. I guess you will be hitting the sack about now. So goodnight.

Ron.

[Celtic PMRGCAuk volunteer in reply to birdwatcher]

Ron, the shaking symptom is due to the steroids and it affects some patients more than others. I used to feel that my body was shaking inside and I lost track of the number of crockery items that seemed to have a mind of their own and end up on the floor! My starting dose was 40mg so perhaps I was a little more vulnerable to the shakes. The good news is it will improve as you reach the lower doses.

[birdwatcher in reply to Celtic]

Celtic,

Thanks for that. You poor thing, 40mlg. I have only ever been on 10 mlg.

The feeling is alittle like muscle fatigue, or if I have had a shock. It is a new symptom for me, and it is very slight at the moment. Thanks again for responding.

Ron