Just signed into this website and forum. Hope I’m posting in the right place and manner, writing from my phone.
I am a 30yr old female And have recently worked out I have AS. Initially felt relief to know what was happening then inevitably reality set in.
I’m determined to use this condition as motivation to look after myself well and enjoy the benefits of being fit and healthy. I wld like to start a local support group in my town as I’ve never met anyone with AS before, not sure where to start with that (advice appreciated).
I wld like to hear some advice on pregnancy and child-reading from AS sufferers (I have a baby and 2.5yr old and wld like to have another but that seems near impossible at the moment).
I would like to learn how to ride the wave of flare-ups without the dread, fear and defeat dominating my mood and taking over my usual Optimism.
I wld love to hear how people manage their AS and what life is like. I am not sure what to expect, hope for or be prepared for.
The symptoms have been pretty constant since 2mnths after having second child (who is now 12mnths). I have however managed to achieve some very slow progress and am sleeping better now.
Currently trying to work out the delicate balance of an anti-inflammatory diet, avoiding starchy food, types and regularity of exercise, how to use medication as a back up plan not a dependency and mood management. I am cautious not to overburden my loved ones and sounding like a hypochondriac when asked how back is or mentioning a difficult time. I myself had no idea what AS was just 6mnths ago. I find ppl keep telling me to rest assuming I have more common back pain. When resting is the exact thing I seem unable to do.
I am very grateful to have found an safe discussion space and some support. Please if you have AS could you write to me. Even if it’s just one thing you’ve learned on your Journey.
Thank you if you read all of that and for any input you may have to offer.
I just wanted to welcome you, and sorry you have been diagnosed with AS, benefit is you can now research and learn how to manage it.
Its definitely a safe supportive place. I dont have AS myself so can't help there.
I’m lucky I have only been diagnosed with lumbar spondylitis and every six months I get the nerves burnt which offer some small relief, albeit any help is good ,I have been to see a neurologist and she wants a full spine MRI inc a brain search (scan?) also a blood test for a number of other bits so I’ll wait and see what the prognosis is .
Still when all said and done there are people in worse situations than us that mantra makes me realise how lucky I am
as long as I wake up alive I'm happy
Because it could be worse
I know it’s been a year since your original post but I recently came across it when searching for more information about AS and pregnancy.
I hope you are coping ok after your diagnosis and your rheumy has you on some effective meds to manage the pain.
I’m 35 and was diagnosed with AS in my mid 20s. The flare ups come and go but I’m currently on a good medication mix which helps. Try to keep up the exercise too, even when it hurts. The more movement and flexibility you can maintain, the better.
In regards to your question about pregnancy, like you, I found that there was very little info about this. But we have a beautiful 2 year old daughter now and the pregnancy was fairly smooth. I had to stay on the humira injections till the last trimester and the fatigue and back pain was next level. But she arrived on schedule (needed to have a Csection) and I have the same pattern in flare ups and pain as prior to her. It did amplify with the lack of sleep for the first year, but now it’s balanced out again. We’ll be trying for our 2nd bub next year.
AS won’t atop you from becoming a mum again. Just keep your doctors close and look after yourself.
And share the word, there isn’t enough data or information out there about young women with AS so cases with pregnancy can be a scary black hole with little guidance!
All the best