Recent content by hope23

Its really not been great, the ankylosing spondilitis is definitely savage and inescapable, even the fringe symptoms are awful, swelling and inflammation in the feet and hands(the feet swelling, you push on it and your finger indent stays for like an hour 🤦‍♀️) and the feet first thing in the...

Its extremely frustrating, i got the ankylosing spondilitis diagnosis and started on immune suppressant and they worked amazing, my pain levels and fatigue were the lowest theyve been since i first got crook. I had to stop them to have my ankle operated on and when i restarted them they didnt...

Oh the challenges 🤦‍♀️ wouldnt it be nice to have the choice/option "to take a day off" from being crook!!!!! I might have to move to the complain, moan and vent thread🤦‍♀️ i am so f###ing over being crook(more how crook i am and have been for since September). I've accepted that i have these...

Oh i love this!!! I feel like a mix between 1, 2 and 5 about sums things up What about you @Badger ?

Its been a while since ive been on here, its been an exceedingly rough 9months, from finding a medication that made a world of difference to the pain from ankylosing spondilitis(as is very common when you have one chronic condition, you often have multiple, my lucky dip draw is Fibromyalgia...

As you said in your question we are all different, and our experience with fibro(and other conditions if you have multiple which many of us do) is different. It can be a harsh learning curve when you go from being one way and having those capabilities to no longer having that or your ability is...

Me too, even better my rheumatologist has a back up plan for if this medication doesnt work, so if this one doesnt work we've got a next step in the wings already which is reassuring Really really lucky im not a needle phob

Thanks @Auriel They are very much needed

Well ive been umming and ahhhing on what to write and how to write it. Today was a lot to digest and take in. Rheumatologist has confirmed/officially diagnosed Fibromyalgia and Ehlers Danlos syndrome. However she strongly suspects that my biggest issue is ankylosing spondilitis. She wasnt...

Well ive had my MRI and back to see the rheumatologist tomorrow(they had a cancellation so i jumped of course) so lets set what if anything the mri showed and see what the plan is going forward 🤞

You are not alone @notsogrimreaper i work 3 jobs not because i enjoy it or want to but because i have to to survive and as such my personal view is also that i have to work to survive and therefore regardless of how crook i am(majority of the time) i can still do my job. Its still my experience...

Just catching up, @JayCS And @Auriel you guys have so much going on, sending hugs and healing thoughts ❤️❤️❤️ Update for me, got my date for my MRI, the one ordered by rheumatologist to investigate the ehlers danlos route, guna be about an hour to an hour and a half on the table, and im going...

Well put 🙌

From personal experience im going to respectfully disagree, i can certainly see your point of view however my opinion and experience has not lined up with your view which is fine. I personally think disclosing is the best way to approach it but thats my opinion i dont expect others to share it...

I could have misread the initial question but my understanding was more along the lines of i have this 'thing' (notsogrimreaper used the word disability) do i need to disclose it and how, whether you call it a disability or a medical condition is up to you (being a medical condition does not...