Hi! I'm Flávia!

Wanted to jump in and welcome you to our community. Many here are going through what you describe - the emotions. It can be very complicated and confusing for individuals on the journey to or just getting a diagnosis. take the time to explore our site. There is a lot of information here, especially personal experiences describing/explaining difficulties of not only physical health but also mental health struggles while dealing with spondyloarthritis. It sounds as if you are going through a bunch of different emotions related to this disease and have questions maybe?


I am sorry you are going through sleeping difficulties. It can get better. Humira is a good start. I know you said it hurts to inject. Many here have described their anguish of giving themselves injections - it can truly be difficult. But as you become seasoned at giving yourself the medication, it gets better. I know when I was doing them, the doctor said I could put ice on the area I was injecting for 5 mins before injection. It numbed out the area taking the severe "sting" away. This always helped me, and my fear began to dissolve. I began looking forward to the weekly/bi-weekly dosing of injections because they decreased the pain associated with anky spond. After starting biological medications I began to move more and was less hesitant to get up and move around.


I am really glad you have the support of your family - helping you dress so you can continue working and be active.


And, using aids is perfectly fine if it gets you to where you need to be. I depend quite a bit on my cane and have used knee rollers, wheelchairs, and a walking bike to get on with living - it's all about what works best for you as a person.


It's really important to keep moving. I found at first it can be daunting but so very necessary for our health. I am glad you swim and do pilates. These are great activities. for this chronic disease - gentle on the body. We have some who enjoy Yoga for AS and love it. Daily meditation is a great practice to ease the chaos in one's mind as well. Exercise/practices are all about finding what is good for you at the moment, and can be transitional, starting slowly and ever-evolving. You'll find it's something you begin to look forward to daily as you being to feel better. I know your mind is going in circles, thoughts racing, but just know we are here to listen. Keep us apprised of your progress.

Hey ,


Welcome to the community, so glad that you found us!


Sorry to hear that it took a while to diagnosed but it is good news (even though maybe it doesn't feel like that) that you finally know what the issue is and can start managing it.


How did your first injection go? I hope that it starts working soon and you start to feel some improvements!


I can definitely relate to those feelings of not knowing what to do or think - I was exactly the same way when I was first diagnosed! But I think the best thing I did was just trying a bunch of different things to help manage my AxSpa and working out what works for me. Luckily there are a lot of different things to try out there, they don't all work for everyone but there will be some things that work for you!


Have you spoke to your doctor about being referred to a physiotherapist? I met with one who worked out a daily routine of exercises tailored to help the issues that I was having and they have helped me massively!


Also, I think it is very cool you design cakes! What kind do you make? I was actually just in Portugal and saw some amazing looking things in the bakeries there too!


Sending love,
James (Community Member)