I’m 7 months into my pmr/gca experience and have yet to find a simple way to explain the condition conversationally.
When friends and family, I usually say, “I have an autoimmune condition that affects my large joints and causes pain…” yet to them I look fine— only my husband witnesses the flares and struggles that have been so life-changing.
‘Polymyalgia rhumatica and giant cell arteritis’ is a mouthful and PMR/GCA is alphabet soup! Both phrases are met with blank looks.
I want people to know what I’m dealing with but medication, tapering, flare ups, or years to remission is a lot to share without feeling dramatic.
Have you found a succinct way to explain this disease?
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PMRSkier
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My immune system isn’t working correctly so my body is fighting itself and makes me feel rubbish a lot of the time.
My blood vessel walls become inflamed and don’t let the blood circulate around my body as it should, so causing stiffness, pain and fatigue.
I need to take drugs [steroids] to control that inflammation. Some days that works better than others, and if I do too much or get stressed then it flares up.,, and I have to take more to get it under control again.
I don’t know how long I will have it, but hope it will go away one day.
I might look fine and normal on the outside, but inside it’s a different matter.
Not very succinct- but as we know it isn’t!
If they are still interested after that [which I doubt 🤦🏻♀️] then show them my info post -
I can tell you you are not alone with this dilemma. I think just about everyone with pmr could say exactly the same thing, and it is mega frustrating.
DorsetLady’s reply sums it up perfectly. I thought there was YouTube video somewhere that covered the issues. Most of us had never heard of pmr when first diagnosed, so we have to learn quickly. You can reckon that the majority of people have never heard of it either, and, as you rightly say, the steroids can make you look good ( the opposite to how you feel).
It’s something we just have to deal with as best we can.
Mostly I would say however succinctly you express it, the majority of people still switch off!
The NE of England charity made a DVD to explain and eventually it was posted on YouTube. Skinnyjonny posted about it 3 years ago so it remains accessible to all. It comes in 3 short bites:
What a fantastic team...congrats to jinasc...love that it's called You are not alone at the beginning, because that is often how it felt. Everyday this forum educates us, which means our interaction with doctors is well informed , and we are better able to fight our corners if necessary. Very grateful to you all. ❤
That was something right at the fore for the NE Charity which was set up before the national one, Scotland was the first and helped the NE lot sort their out. They were then instrumental in laying foundations for PMRGCAuk and geting people involved.
I think it's a bit like the "How are you?' that we do so automatically when we first see/meet someone. We're not REALLY interested. But just in case seomeone is - it's good to have this fairly, succint explanation.
I had a very obscure job before I retired, so I use a method very similar to the one I had when explaining that.
First, I just say I have an autoimmune disease. If they look lost, I just say that's where your immune system attacks your own body. If they seem interested (or already know what an autoimmune disease is), I say that, in my case, it attacks my main blood vessels. I also typically mention that I have to take steroids, which can have a lot of nasty side effects. If they're still interested and processing, I can talk about the official diagnosis, how rare it is, symptoms, other treatments, etc.
So, in other words, I just feed it to them bit by bit given their interest level. Another good idea is to mention other autoimmune diseases they may be familiar with RA, lupus ...
I mean I had never heard of it myself before diagnosis - most people I tell don’t think it’s serious - that one gets to me the most to be honest . Which worries me as I’m facing a limited work capacity tribunal when the date finally comes up so usually when telling people I just say how it affects me -most people have heard of fibromyalgia and start going on about someone they know with that !
Yes I include family too - 2 of. My daughters are avid readers so they have been a great support because they bothered to get to know what it is and what to expect -but there are many that don’t understand it or how the medication affects me
My daughter does make me laugh tho ooh “mood swings” she reads on the list of side effects - how wil we know it’s the tablets mam? Haha
It helps a bit if you can liken the physical effect to rheumatoid arthritis but that it attacks the blood vessels. And potentially, it can progress to GCA which can cause irreversible sight loss or strokes.
I just tell people I've got an autoimmune disease related to Rheumatoid Arthritis, but a bit different. I have to take steroids for it, but unlike RA, it can go into remission, so I hope one day to be off the steroids, but till then, I need them or I'd be bedridden.
Normally that's all they want to hear, just a potted and totally simplified explanation. Otherwise you can see the eyes glaze over as they gaze off into the distance and become temporarily deaf.
Good luck with your tribunal. I expect you already know that people are mush more likely to succeed when they have someone with them who knows them well.
Hi, I always say my body thinks I have an infection that I don' have.....so it's fighting to get rid of it but I causes me pain and discomfort....If they are interested they ask more!
I know it's not that clinically accurate but I usually say 'my immune system is attacking my muscles and it's as painful as all-over cramp' . That conveys something of the nature of the beast and how it feels
I once described it, when I was having a really bad time as my head being crushed and thrown in a washing machine, my throat and neck had ball bearings stuffed into it and my shoulder blades and lower back felt like the bottom of vesuvius bubbling away..... that's my LVV 😆
I don’t have PMR but Adult onset Stills disease which for me manifests as rheumatoid disease and has similar symptoms to PMR and Lupus. I’m 62 now and diagnosed aged 17. It was easy at the beginning when I used visible aids like splints and people offered help. I do feel that people don’t entirely grasp the pain levels of the afternoon crashes that feel like death or how one day I can go swimming but the next day can’t even lift a cup of tea.
I just say I have a rheumatoid condition that makes my muscles weak and stiff, hurts like hell and sometimes makes me feel like I’m dying, dramatic but that word gets their attention if not their understanding.
I wonder if saying you have something similar to what Celine Dion has might help get the message heard? She has stiff person syndrome - similar effects in terms of stiffness and functional limitation.
I say I have a sort of arthritis caused by the covid jab which can cause pain, stiffness and sight loss if not medicated but I'm much better........mostly they switch off after pain !!!
It isn't accurate to suggest it is directly caused by the Covid jab - almost any vaccination could have triggered it because of their effect on the immune system and so can a whole range of other events. There must be a (probably) genetic predisposition on the part of the person and if the Covid jab hadn't proved to be the final straw that broke the immune system's back, it would have been the next event, illness, trauma, emotional stress.
Hi yes I know..... however that was my experience and anyone I would tell would know I was fine up until the jab ....most of the people I know have known me through dancing for many years, many flu jabs and many stressful events.
It's good you have raised it here on the forum........as I said the people I talk to either know me well and my views on the subject anyway or are medical professionals ......I did not intend to influence anyone here either way
You would be amazed how many try to blame the Covid jab alone - PMR was around a LONG time before Covid, even a long time before most vaccinations if it comes to that!
I suspect when people suddenly contract something most have never heard of, then the first instinct is to blame it on something you have recently been given and possibly not had before. It might not be totally logical but then human nature isn't. Mine was certainly not anything to do with Covid or Vaccination. In retrospect having PMR helped me with Covid as it put on the priority list for vaccinations as soon as they were available. That still applies now, as well as age.
The short answer to this is sadly "No!" I was diagnosed with both in February 23. Was started on 60mg Pred. Instructed to reduce to 40 at end of first week and experienced horrendous withdrawal symptoms. From here until July 23 suffered the worst ever sleep deprivation and daily fatigue. When I turned to the person I considered my best friend, she criticised everything I was doing, from the order I was taking the plethora of daily tablets to the way I WASN'T helping myself through the nights. Her grandmother had had the same illness and was absolutely fine once started on steroids, but all she ever heard from me was "how ill I am."
Long story short, In November I ended up having a bit of a breakdown and have been taking low dosage anti - deps since. My family however, were amazing, especially my husband who like yours has witnessed the progression of this insidious illness throughout and has been unfailingly supportive.
If I could turn the clock back I would have given her a piece of my mind and cut her out of my life immediately, but I was vulnerable and it was such a shock to receive that treatment from someone I trusted, that my GP actually diagnosed me as having PTSD on top of everything else.
I now avoid the people who I know have little patience or willingness to understand and I put myself first. Before the illness I was jogging , cycling, kayaking and fell walking. It has been life changing, but I have learnt what my priorities are and the value of loving family and real friends.
Be kind to yourself and ignore other people except those who matter.
not sure if this helps. I wrote to friends saying “ I am writing to special people in my life” (they like that!). Not long letter, just simple explanation , might not be my usual self for a while, it could be a year or so, has helped.
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