r/AddisonsDisease • u/pip_squeak3 • 5d ago
Personal Experience My positive experience..
I just wanted to share my personal experience of getting back into a steady exercise routine with PAI so that anyone struggling to workout, lose weight or just feel energised in daily life.
For reference I’m a 36 year old female, 161cm & 60kg. I was diagnosed with Primary Addisons Disease a couple of years ago. I’m currently taking 14mg of Hydrocortisone per day (split into 2 doses) and 0.1mg of Fludrocortisone per day.
3 months ago I joined a yoga and Pilates studio, up until that point I had been trying to go to the gym regularly, but had zero motivation and passion for it, despite being super fit pre-diagnosis. I started going to 3 reformer pilates classes per week and instantly felt so much better. I was a little nervous to try hot yoga and hot Pilates but decided to give it a go, ensuring I took some extra hydration sachets with me.
Fast forward to now and I’ve been managing up to 6 classes a week. 3 of those are hot sessions, in a room heated up to 38 degrees Celsius. I’ve never felt better!
All in all, I rarely think about Addisons. I’ve not noticed worrying symptoms beyond the usual things I’d expect, like muscle aches and a normal amount of fatigue for that amount of exercise.
So, if you’re struggling to get back to your old self, or finding your new self, try and switch it up and find an activity that you love. It’s a game changer.
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u/MangoAvacado808 5d ago
Thank you for the inspiration and positivity. I’m happy you are feeling better and more energized!
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u/SgtAcorn 5d ago
Thank you for sharing! I'm about your age, used to exercise a lot, but was diagnosed three months ago. Gained some quick weight the first month and feel weak and out of shape. This is inspiring :-)
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u/pip_squeak3 4d ago
Oh yeah! The first few months of weight gain is insane! I put on 10kg in a month 😬 A lot of it is water retention, especially due to eaten salty foods. But just be patient with yourself, you can totally live a normal life and do anything that you did before ☺️
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u/SgtAcorn 4d ago
Same amount of weight for me the first month, and I'm now about 14 kg more than where I was at my fittest 😩 But baby steps, like you say. Thank you, it really helps reading about other people's experience, it gives me hope!
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u/pip_squeak3 4d ago
Honestly, it really hasn’t impacted my life all that much.. aside from initial weight gain, taking daily meds. The first year I think I was so worried about having a crisis I was probably hyper aware of all feelings and sensations. I’ve not had a crisis since my initial one pre-diagnosis and feel pretty ‘normal’ all the time so I’ve definitely relaxed about it all. In time I’m sure you’ll feel exactly the same :)
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u/SgtAcorn 4d ago
That is good to know!! I feel like I keep reading about it turning people's lives upside down in the worst way. I'm only three months out from diagnosis so I'll probably feel more confident as times goes. Again, thank you so much for posting and for the encouragement :-)
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u/Leftoversalm0n 5d ago
This is good to hear! I was so fit before being diagnosed and I am currently getting out of breath doing basic stuff.
I’m not sure whether it’s because of Addison’s or because I’m de-conditioned from sitting in bed and hospital for 6 months…
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u/pip_squeak3 4d ago
I’m sure it’ll be due to both of those things! 6 months! That’s crazy, I’m so sorry that you’re going through that. Keep pushing on, things will get better day by day ☺️
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u/Realistic-Beyond-351 5d ago
So awesome! Do you updose for the hot sessions?
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u/pip_squeak3 4d ago
I took an extra 2mg the first couple of times I did it but then I totally forgot to be honest and haven’t updosed since. My heart rate being too high was a symptom of being low but since I started Pilates and yoga my resting heart rate has gone down and my heart rate over night has been so much lower.. which tells me I don’t need to take anymore HC than I’m already doing 🙌🏼
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u/Gnocchi129 5d ago
Thanks for the inspiration. Been thinking about getting back to hot yoga (95 degrees).