Top tips for the wife of someone recently diagnosed with PMR?

[MrsPMR]

Thank you everyone for all of the insight - I feel a bit of a fraud as I don’t have PMR myself. Previously fit and healthy husband floored with it and diagnosed last week. Started 20mg of pred on Tuesday and we’re now figuring it all out. I’ve found it really helpful reading lots of your posts - any advice you have for the partner of someone recently diagnosed and still reeling is very welcome 🙏

[DorsetLady PMRGCAuk volunteer]

Hi and welcome to this new world your husband (and you) now occupy..

Have a browse through the FAQs -see featured content under first post on this page and/or under pinned posts - and maybe start with this - as important for you as him-

healthunlocked.com/pmrgcauk...

Always someone around to answer question, listen to moans, whatever. 😊

When you’ve got your head around all things PMR have a read of this for help on using forum and pop a bit of info on bio please…saves us keep asking questions - thanks.

healthunlocked.com/pmrgcauk...

[MrsPMR in reply to DorsetLady]

Thank you - I shall update the bio and have a good look around.☺️

[PMRpro Ambassador]

Hi and welcome!

Why a fraud - we have quite a few family members who join on behalf of a parent or spouse (to be honest, usually a husband who poo-poos the idea of a forum) to learn more about how to cope with living with PMR or GCA. We understand that - but google does sometimes some up with some good and useful info and we think we are one of the better offerings 😇

Tell us a bit more about his diagnosis, history of the symptoms and so on, age, job, hobbies (is he a golfer, biker etc) and that helps us to help you. Oh - and country of residence as that makes a difference very often.

Just come and ask any specific questions or make comments - some of us could write for hours and still not answer what YOU need to know, so give us some context.

[MrsPMR in reply to PMRpro]

Thank you - we’re UK based. MrPMR is 57, was really active…we were both professional skiers and mountain guides before returning to live in the UK a few years ago. A couple of months ago he hurt his knee, developed a bit of inflammation but more or less carried on. Had some muscle pain and stiffness but put it down to compensating due to the dodgy knee, then literally couldn’t get out of bed without help. Completely debilitated, constant pain, but limited to shoulder/chest and hip girdle. Following an emergency GP visit, diagnosed likely PMR, had recently had blood tests due to the knee and they showed high C-reactive protein and SED rate. Prescribed Pred but we spent a week thinking and reading, Chinese medicine made a bit of a difference but then the pain just got too much. Started on 20mg of Pred on Tuesday. Seems to be helping, but waking up stiff and in pain. Frequent night sweats as well. Just figuring things out day by day…

[PMRpro Ambassador in reply to MrsPMR]

Was that due to the B-word? Were you in mainland Europe? But even "UK" can be complicated - Scotland is a different matter altogether ...

After the meeting about PMR/GCA I attended today, with severe night sweats, that may indicate a bit more than "just" PMR but let's see how he gets on the rest of the week.

[MrsPMR in reply to PMRpro]

Not due to the B - we were ready for a change from the beautiful Pyrenees - not sure what I was thinking now!! We’re in flat East Anglia, quite the contrast. Yes - I think I came across something about night sweats and GCA the other day - is that what you’re thinking? His pain is right down and mobility much improved but he’s really tired!

[DorsetLady PMRGCAuk volunteer in reply to MrsPMR]

Well it crossed my mind…. although I didn’t particularly suffer from that. . But not everybody gets all symptoms of PMR nor GCA… that can be why they can be difficult to diagnose at times.

[PMRpro Ambassador in reply to DorsetLady]

As we were being told this afternoon!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

We know that, how come some don’t… 🤨

[PMRpro Ambassador in reply to DorsetLady]

Wot I keep saying ...

[PMRpro Ambassador in reply to MrsPMR]

Yes - somewhere on the spectrum, LVV at least. Sweats aren't particularly common in PMR though they do happen.

I can't face the thought of a move - I lose my super medics! The weather is currently doing its best to persuade me - wettest first 5 months of the year since 1951!!! Really had enough ...

[MrsPMR in reply to PMRpro]

Thanks both - we’re due a follow up with the GP next week so I’ll keep a close eye and push for referrals then etc Let me know if I should be doing anything else in the meantime.

BTW sounds like someone has been trying to teach you two to ‘suck eggs’!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well we are both grandmas😉…

[Charlie1boy]

I just showed your post to my wife, who has had to put up with me getting pmr, when I was fit and healthy a few years back.

Here are a few points that she made:

- you will need patience

- you will likely feel some anxiety, and worry about what he is going through

- try to make sure he doesn’t try to do too much, and gets plenty of rest

- talk things through with him on a regular basis

- Keep as factual as you can, rather than emotional. May not be that easy!

- try to keep positive, and encouraging

- go through with him things that he CAN do

- respect that he may not want to do certain things. Explain to family/friends

- have a good friend you can talk things through with.

Hope this may help a bit. We are all different, and your husband may not react as I did. I’m sure others will be able to give their story.

Good luck and do keep in touch with this excellent Forum.

Paddy

[MrsPMR in reply to Charlie1boy]

Thank you and thank your wife - it’s a great list and really helpful. Lots to figure out!

[PMRCanada]

I have a special place in my heart for the partners of PMR/GCA patients. I would add that moods are bound to change and be impacted by pred at higher and lower doses. I chose to take time alone when feeling frustrated or angry at 20mg pred as to not create conflict with my husband. Now as I taper at a lower dose, I’m feeling irritated easily and sad/melancholy at times which in part is connected to my adrenals sputtering back to life. At times I did not feel like myself, however this was temporary and a good friend pointed out I was still me.

Patience, flexibility, and meeting your husband where he is at in the moment is key. Also please take time for yourself along the way.

Post anytime with enquires…we are here to help.

[MrsPMR in reply to PMRCanada]

Thank you - really helpful!