Some of my PMR/Covid thoughts & experiences

[VolvoMan73]

I've been reading posts for some time & found them overwhelmingly more than helpful but on this particular subject I think it's time for a bit of positivity.

I've had PMR for about 3 years, undiagnosed for 2 of those years. I would not wish that period on anyone. Progress since Prednisolone was prescribed (20mg starting) has been intermittent after the euphoric standard initial reaction. Through the following 3/4 months I was able to, comfortably, gradually reduce to 10mg. At the beginning of December I contracted Covid. It initially felt like a PMR flare, which I had not experienced before, but the Covid test was positive. Fortunately it was a mild dose of the virus & I recovered after a week. There were a number of after affects, mainly fatigue, but nothing serious.

I have since had my two Pfizer Covid injections. After the first I had some mild after affects which kept me in bed for the first morning after & overall lasted less the 36 hours. The second injection was an entirely different experience whereby I woke at about 2am & found myself totally unable to move in bed, a real problem should I have needed to use the bathroom, seriously. I had 4/5 hours of lying awake, fell asleep again & woke again at 10am feeling a lot better. I was able to get up & have tea & toast & again it was less than a 36 hour problem.

I had that second injection on the 11th of March & following the initial after affects I felt fine. However a few weeks after I started to get the familiar PMR symptoms again; neck, shoulder & arm pains, feeling exhausted & wanting to sleep of an afternoon. A chat with my GP ( who is brilliant) & I was back up to 20mg of Prednisolone for a short period (1 week) & I felt a lot better. I am gradually reducing again (currently 12.5mg) so I'm now back on track. I have, however, learnt that it's not a race to get to 0mg & you must pay close attention to what your body is telling you & adjust accordingly. I am confident enough now to adjust my dose as I think necessary or otherwise talk to my GP who is more than willing to help. There is no doubt in my mind that contracting Covid & Covid injections have affected my PMR recovery process & progress.

As I've said, I've been reading these posts for some time & felt it was time I made some contribution. There are number of points I would like to make in conclusion :-

1. Make sure to choose the right GP to talk to initially, 4 out the 5 I tried to talk to didn't have a clue or didn't want to know, the 5th picked up on it straight away (even during a Covid restricted telephone consultation) & started me on the recovery road.

2. Do not get too enthusiastic over your initial reaction to the steroids, enjoy it while it lasts, but expect knock backs, which you will inevitably experience.

3. In my experience I think it's reasonable to state that, whilst I have not maintained the initial level of progress, I have never slipped back to my original sorry state when showering, tying shoe laces, bending down to stroke the dog was just about impossible. So patience & positivity required.

4. I would reiterate that you must make sure you adopt a positive attitude to your situation (easier said than done sometimes). I've found that occupying your mind to alleviate the inevitable stressful times by doing even the most menial of tasks makes one hell of a difference - cut the grass, clean the car, clean the downstairs windows etc, etc. All done in a time consuming not too strenuous pace, works wonders.

Stay positive, it does help enormously.

I've said more than enough but just hope that I've provided some food for thought.

Thanks for all your contributions.

[SheffieldJane]

Very helpful. Thanks!

[CathyMeg]

Great advice. Thank you for sharing this.

[bussell]

A very timely reminder. After a flying start in January I feel I have been slipping back a bit recently. Probably doing too much because i'm feeling better. You are right - it is an up and down process - and we have to be both realistic and positive. Thank you!

[PMRpro Ambassador]

Some very salient points - you can have a gold star for paying attention and analysis Especially for the point about if at first you don't succeed with a GP - try, try again.

I recently cleaned my windows one at a time - not many but large-ish - using a Karcher window cleaner. I can't say I found it uplifting but I can see out better Couldn't have done it without the technical assistance mind.

The car? I took to get a new battery as the old one simply died on me. Not the cheapest but then, it will probably live longer than the car will since previous ones have lasted 6+ years. They took pity on me - or were encouraging me to come back for the next task - and washed the car as well!

Grass? Not got any - I leave that to the farmers ...

[123-go in reply to PMRpro]

I laughed (good medicine!) at your window cleaning comment. I feel great after I've cleaned the oven. I tried the stuff that you spray on and leave and while it did a good job the smell and trying not to breathe while cleaning was a step too far. Good old Brillo pads, a sprinkle of baking powder and elbow grease do a good job.

[PMRpro Ambassador in reply to 123-go]

Oven????? Don't even go there!!! I wish there was one of those people who specialise in cleaning ovens around here. The oven in this kitchen is in a normal below the hob position (tiny kitchen). My previous kitchens had all had the oven higher up and I could get at it so much better.

[123-go in reply to PMRpro]

Ooh! Painful on the knees. I suggest you don't look too hard when putting in or taking out of the oven. What the eye doesn't see.....😉

[Purplecrow in reply to PMRpro]

Oh pleeze......there are so many more important things than cleaning a splattered oven......like watching the clouds, smelling the lilacs, petting the dog........etc.

[Purplecrow in reply to PMRpro]

👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽

[VolvoMan73 in reply to PMRpro]

I had initially thought it best to ignore what appears to be a very patronising response to my attempt to give some insight into my PMR experiences.

But on reflection I feeI a response is appropriate as I had made a honest attempt to give some insight into how I have dealt with the ups & downs of the journey, fully appreciating that PMR affects different people in different ways but hoping that some of my experiences would resonate with some people. Judging by the many positive responses posted, this appears to be the case.

Your reference to window cleaning, car maintenance, grass cutting etc, totally misses the point I was trying to make or it is, at best, an extremely poor & unnecessary attempt at humour.

If this response offends in any way please feel free to remove me from the forum.

[DorsetLady PMRGCAuk volunteer]

Hi,

It's always good to receive a positive post, and we do get them, but perhaps not as much as we would like, but I think you need to remember the main reason this forum is used by members is to receive advice from their peers that their doctors cannot or do not answer. Sometimes it's very difficult to remain positive in that situation, particularly if you have other health problems or live with someone who dose.

If someone is managing their illness without issues, they may well read posts, but probably don’t feel the need to ask a question, although they may well offer advice - which is gratefully received.

It’s a bit like life really, how many people contact their doctor, garage, or utility company when everything is okay to say “everything’s fine, thank you”- they only ring when there is a problem.

Also, when their illness goes into remission, too many just leave the forum, feeling it’s not necessary anymore.

That’s a shame, it’s uplifting for members to know there is life after PMR/GCA ....…some do give periodic updates.

Others hang around and offer advice - and hopefully give a positive outlook for those still struggling.

[S4ndy]

I set myself small tasks to do. I break these tasks into smaller units and it may take longer but do get it done. For exple my wardrobe needs a good clear out. So I made a start by sorting trousers and leggings. Then another day I did t-shirts. I've still got a long way to go but at least it's on its way

I am overweight but have lost a stone doing the FAST 5-2 so far. I am delighted as that's the lockdown weight gone but still a long way to go. I sweat buckets when I do anything and look like someone's thrown water over me. I am in constant pain but the level varies. I have found the only way to cope is to be very kind on myself and not stress if I cannot do things.

Today I am going to the supermarket. Something rare as I've been having deliveries. I know I will be tired after that so plan rest and relaxation after with a supper made by hubby from yesterday's left over roast.

I have learnt that the best way for me to keep my equilibrium is to pace all my activities and not to beat myself up or become negative. Keeping positive is certainly the key but not always easy xxx

[Carriemetz]

Good advice, all of it. Staying positive - difficult tho it is sometimes - (we’ve all had our head in hands moments, I’m sure) - is the best medicine of all, apart from pred, which, side effects and all is a blessing. Good luck and hasten slowly. 😉 Carrie

[Jackoh]

Thanks for sharing 💐

[MiloCollie]

That's really helpful thanks.

[Coco63]

Thanks for posting that volvoman73 I’m only a few weeks in since PMR diagnosis so keen to find all the positives possible in this bewildering time!