Newfound respect for PMR and the people who deal with it.

[FreeWolf]

I have a sense about the character of my other illnesses. Together we get along. I know their signals: when to rest and when to push it. I have done well for decades living with these afflictions and I am thankful that I have been lucky to avoid some of their nastier expressions. But I must say that I did not fully understand the nature of PMR when I was first introduced. It's a sneaky thing and hard to read. It needs a strong rein and a lot of patience. Thanks to all who share and guide those of us who are finding our way around this thing.

[DorsetLady PMRGCAuk volunteer]

and a lot of patience.

… and even more patience … plus excellent negotiating skills😉

[FreeWolf in reply to DorsetLady]

You've got right!

[PMRpro Ambassador]

A LOT of patience - and then another helping on top!!!!

[FreeWolf in reply to PMRpro]

Nothing truer said.

[Charlie1boy]

Very accurate in your description of pmr. If you come across any of my previous posts, you will see lots of references to patience!!!.

One also needs to learn how to manage expectations - especially those given by some GPs/Rheumis, who tell you pmr only lasts two years.

[Janet57]

yes, patience, more patience and pacing yourself which can be very important once you start moving/getting around/exercising again.

[Gimme]

I'm doomed then. Patience has never been my strongest character trait. If you believe in karma, perhaps the universe is teaching me something. 🙄

[Hulotsholiday]

Very well put. I found acceptance was key; it took a few years and a bumpy ride to a lightbulb moment where I realised that the disease was in charge and I’d have to ride with it rather than fight against it all the time. Now, with patience, I can accept that the taper will be long and very, very slow and is unlikely to ever reach zero.

[AtopicGuy]

Indeed. Chronic illness is about learning how to play the hand you're dealt!

I hope your doctors are approaching your illnesses holistically. CMT2, MS and PMR is quite some combination, with overlapping symptoms. Are you on an immunosuppressant for the MS: azathioprine, cyclophosphamide, methotrexate, or mitoxantrone, for example? If you were, that might help the fight against PMR.

[FreeWolf in reply to AtopicGuy]

Thank you for your interest. I am on nothing for MS and have done well though I had a number of exacerbations that were treated with solumedrol I.V. The CMT is fairly mild, thankfully. As for any immune biologicals, I was told by my MS specialist that most of these work on CNS inflammation which is not likely to happen at my age. Hope she is correct!