I am new here, my first post. Sympathy is in sho... - PMRGCAuk

PMRGCAuk
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I am new here, my first post. Sympathy is in short supply...if you look ok you must be ok!

Pmrmolly2018
Pmrmolly2018

Diagnosed in June and ‘sympathy’ is unfortunately in short supply....I feel irritable that people, (especially) husbands think all ok because you look ok. It is hard for you but some men just can’t cope with illness, especially if you are the engine and coper in the family. Hope you get through the next few weeks and try not to stress...makes me much worse. It’s all a rotten business.

I was given 15mg pred...didn’t work so asked to up and then 20mg. Still took 6 hours to work so no good til lunch time. No immediate miracle for me. Then asked to spit 10/10 am and pm this made life much better. Now on 13mg at around 9pm only. Perfect. No pain at night and not so much steroid ‘madness’ during the day. Am now on dead slow 1/2 mg per 2 weeks reduction and see how I go.

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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi, and welcome

Yes it is frustrating that you look well on the outside when feeling so rotten!

But if anything, in time is does make us less judgemental of others who also who have “invisible” illnesses, so maybe it’s not all bad!

It’s true that many men don’t do illness well, but I think that’s because they don’t want to admit that their loved one is ill! If they don’t admit it to themself it’s not true.

Glad things have settled for you, and good luck, and yes you are right stress is not good - but it’s very difficult to avoid at times, just do all you can to lessen it!

Take care.

Welcome. I’m new to all this too and despite looking really well, feel like I’m dragging myself around. When people comment on it or say “you’re obviously better”!! I say “ that’s the only joy of taking large doses of steroids”! Usually shuts them up!! Good luck, this site is very supportive and helpful

Good Morning, I just read a study that said 80% of the people in the study reported uncommon emotional stress before the onset of the autoimmune disease they have. Having PMR/GCA is a good opportunity to rethink your “doer/coper “ role. Also, you can’t control what other people think either, but you can control how well you take care of yourself. It is very important to mind diet, exercise, stress and spirit for a good outcome.

I wish I had that complaint. I look awful. My eyes are sunken in from being so tired and my face is huge from the prednisone. I have spots all over my skin and my skin is thinning something awful. Also, I have gained 10 pounds. No one is saying "you look so well for being so sick". Take the compliment and be glad you look well.

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