Having managed almost 4 years with GCA I am now told I have developed PMR and am now enjoying back pain and stiff legs, 2 stone heavier, Michelin Woman body, swollen ankles to match the moon face. CRP is 21 but the Rheumatologist doesn’t seem to think it’s an issue.
I am now in Portugal having one of these Intergenerational Holidays, a euphemism for Granny Rov paying. One fell out of bed on the first night, the other woke up because it was dark and they try to drown one another in the pool. My reward for this generosity has been my inflatable Avocado, impossible to get on and worse to get off. However I float to the deep end out of their way and it’s surprising how a hat, sun glasses and matching bikini can hide the body hideous.
Got to hang in there.
Take care everyone
🥂🥂x
Written by
EdithWales
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Hi EdithWales - 'insult to injury' - I had the opposite - first PMR then GCA but as we know they often like each other's company - in the meantime you are looking very summery and well !!
I don’t know which is worse. I had really bad GCA with unbearable headaches and CRP of 189 with ESR of 130 but as soon as I had the steroids I had very little dramatic. I didn’t have any other pain and I wasn’t tired, with this new friend the pain in my legs and hips is awful and I look obscene. Never mind, still here.
Neither is 'fun' - that's for sure and despite how you feel you look determined and even rebelliously 'bright' !!
I have been as 'fortunate' as I could be with my first GCA symptoms - not very dramatic - just facial sinus type pain rather than bad headaches - but sufficient for me to realise that was what I probably had (like my mother). This followed a PMR diagnosis - which was fairly 'classic' and quite misery-making with the stiffness and lack of mobility I had for many weeks - even months before.
But one thing I have come to recognise after reading the posts here for more than a year and a half - is how unique we all are while also being similar enough to share the experience of a 'recognised' disease. Although I am hard on doctors who I think should be much better informed - for this reason - the 'eccentricity' in the combo of symptoms we might manifest - I recognise diagnoses can be complicated. This is even more true when many people don't necessarily have particular clinical symptoms such as high inflammation markers.
Yes I am rebellious, it’s my coping mechanism although I didn’t anticipate PMR kicking in with the attendant pain.
I also agree with you about the complexity of this disease.
Despite the published information there are still gaps in the collective medical knowledge, I have had two Rheumatologists both saying different things and a GP husband with an 9 person Practice and they all have different levels of knowledge and expertise. Mine admits he thought he understood it but now admits he doesn’t despite me
feeding him with anything useful from this site. You are right about the blood markers we now consider them but the most important is the clinical symptoms .
What I appreciate most is the help with the little things, the multiplicity of symptoms that are trivia to doctors but cause us such stress. It makes it so much better to be able to share with other who really know what it’s like.
Sorry to hear of your recent additional diagnosis and accompanying pains. Hope it doesn't complicate your healing journey too much, and they get the inflammation under control quickly.
Love that you are able to adjust to your changing situation and enjoy some much-deserved relaxation in the pool in Portugal. Looks divine, just like you!
It wasn’t easy and getting out resulted in an inelegant flop into the pool. Fun though.
Take care 🥂
YOU LOOK FABULOUS!!!! The matching bikini and giant avocado... BRILLIANT! And the orange hat is a definite YES! You may be have back pain, stiff legs and a little extra weight, but you are stylin!!!!! Have a blast!!!!
Still looking Fab-U-Lous💚loving the giant avocado 🥑
Fancy PMR coming along & biting you on the bum so to speak, it’s just not fair!
I can imagine you emerging from the pool after you flipped into the poll! 😉
Been on Clothes transfer today from the rental house to our new home, we move on Wednesday but thought of get some things over there & give myself a bit of a head start!
Thank you. Sadly had to leave my Avocado behind, I was told it wouldn’t survive as it had a leak, fun while it lasted.
Very exciting getting things organised for the new house. I have a big vibrating thing in the gym at home I haven’t used it for several years so it’s been brought to Chepstow. I am hoping that I can wobble away some of the fat and tone up the muscles. We shall see.
Off on Thursday on a Danube Cruise with my daughter and 83 year old friend, she has the time and the money but no one to arrange a holiday or look after her. We have had lots of holidays over the years and always have a laugh. She also likes a glass or two of the bubbles.
All this going away wears me out but I had another friend die a few weeks ago and he was in his fifties.There is only now.
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