Hi. I am new here. There is a ton of info to be navigated through! Well done.
After being diagnosed with the double devil of GCA/PMR and going on high dose prednisone, it was a more than a bit shocking to discover that my body was dramatically changing, my energy was completely zapped, my face and hair had changed and my brain no longer functioned very well... all affecting my personality to a degree as well. It was exactly like an existential crisis. Who was this stranger in this strange body? Very odd feeling, but there is nothing to do but embrace it and try to live your best life within the new limitations. My social life has largely gone down the tubes, but I try to do the things that still really matter with the people who matter. Even so, it is a lonely journey without support groups like these.... my gratitude to all who share their experiences here.
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PinkertonCat
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I think we've all been there to some degree or other. But it will get better with time. And yes, I too found this place absolutely essential and grounding. Don't know what I would have done without it.
Welcome to the site PinkertonCat. You have the great attitude we all strive for. Things will be even easier now you’ve found this community. No problem too small to bring, as well as cheer and humour and of course the dark side of these diseases, made lighter. Existential crisis indeed! Not all bad.
It took me ages to learn to live as this person who isn't me and who doesn't even look like me. Life has been a compromise for years, now it's a bigger one. Welcome to our group.
Hello & Welcome 🌺
You landed on a Great Forum, lots of Support, Sound Advice with a Few Laughs along the way!
Re the Social Life it’s good to hear you’re still managing to do the things that matter & you will learn to adapt ie Lunch Dates rather than Supper Dates, l found l could get tired & overwhelmed in a large group so had more one to ones except for our little trio The Three Musketeers & l created Coffee Club for all my friends so that worked well.
It’s very hard to look in the mirror & wonder who’s that looking back at you but give it time.
I don't think I could have survived happily without the people on this forum, both the good advice and the reassurance that I'm not the only person to suffer these conditions which I'd never heard of until I was told I had them.
I was diagnosed with GCA and PMR in late July 2016 and started on 60 mg of pred per day. I well remember the bizarre feelings that accompanied the high dose. A lot of it was euphoria to be free of the terrible pain and stiffness that had plagued me for the previous few months, although I soon found that it did nothing for the fatigue and the general unwell feeling, and that, despite the fatigue, I was experiencing severe insomnia for the first time in my life. I was distressed by the 'brain fog' or 'pred head', and was worried for a time that it was the start of some form of dementia. My face didn't change very much, but I did succumb to the rampant hunger and managed to gain nearly 20 pounds until I reined myself in. If you have problems of that kind, you'll find plenty of advice on the forum about avoiding sugar and adopting a low carb diet.
After 18 months and now on 10 mg per day, I'm starting to feel more like my 'normal' self and far less lethargic, my brains is functioning rather better and I'm actually going out and joining things. Although I still get tired incredibly easily, I've lost the constant flu-like feeling and this has lifted my spirits a lot. I can even imagine a future without these ailments...
Welcome - it DOES get better, I promise. In a year you will look back and see how far you have come - everyone does. Providing that is that you don't push the limits too far - whether it is activity or reducing the dose of pred. Everyone wants to be back to "normal" and thinks that happens by going back to their daily routine without adjustments or by getting off pred - and neither are advisable quickly. You have a new normal and the key to success is doing things SLOWLY.
Welcome PinkertonCat. So glad you found us. I understand what you are saying about not feeling yourself. At higher doses my personality changed at times, and I found myself overwhelmed by my having PMR, or I was irritable and impatient. My hair has changed to and so has my abilities.
Once I truly accepted that I’d be dealing with this for years and not months, I felt inner peace. As I lowered my pred dose, the mood swings lessened. As PMRpro says...it does get better. I’m approaching 9 months since diagnosis and am managing my condition, and my organic knee issues much better.
Adjustments need to be made, and support from a professional therapist can help (I went to mine every couple months in the beginning). It also really helped when a good friend looked me in the eye and said “Leslie is still in there, you may feel different but you’re still the same person.” (sigh of relief)
Good things can happen too. I embraced a new lifestyle of healthier eating, regular exercise, and a balance of rest and activity. I’ve lost weight and reduced my bp meds. Attitude is KEY! Looks like you are trying to make the best with what you’ve been dealt with.
You are not alone! We are right here with you and will understand your woes and celebrations better than most because we live with these conditions. This forum is vital for me, and I’m ever grateful for their support, wisdom and humour.
Welcome to the club. I also have GCA/PMR and started at 60mg of Prednisone. I am now down to 5mg and life is a lot better, it just takes time. You will have your 'ups and downs' but you will get through it. Stay strong and pace yourself, naps rule?
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1st Post and 1st Rheumatologist tomorrow - what to expect?
Struggling to get a definite diagnosis
Tempus Fugit
Threem from Canada
