Looking for a Support Group 😊

By Emlove21

1 min read

Hi, my name is Emily and I am going through the process of getting a care plan for my AS.

I’m new to having AS and some of the stuff the doctors have been hitting me with have been giving me anxiety and having me feel some type of way.

I don’t even know what to research or what to expect.

If anyone would like to share and give me advice and really just anything I’m here to listen with open ears.. thanks for your time.

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Lisa Marie Basile Moderator & Contributor
I just want to say thanks for sharing here - this community is definitely here for you! I would check the Spondylitis Association of America for local groups. That’s how I found mine. Also it might be worth it to start one with a FB page and ask people to join it!
Nadine Cruz Member
Hi Emily Glad to have you here welcome 🤗 How have you been holding up since your diagnosis? When I was first diagnosed in 2018 I was so lost, I was in shock, confused angry, sad I think I felt every emotion you can name. Like you I seeked support through social media and community sites like this one, I also started my own support group on IG because I couldn’t find one at that time that was the right fit for me. I became my own advocate educating myself and others over time because I didn’t want anyone to feel alone like I felt when I was first diagnosed. Your in the right place and we are all here to support you through this new journey. Always happy to chat and share. Wishing you all the best 💙Nadine (Community Member)
James Hollens Moderator & Contributor
Hi <inline-mention username="Emlove21" user-id="4718535"/> , Welcome to the community, we are so glad you found us! I know just how confusing and scary it is was for me when I was first diagnosed so I know what you are going through right now. It is quite hard to say what to expect exactly as everybody is different. What treatments have your doctors discussed maybe putting you on? I think one thing that helped me massively was asking my doctor to refer me to a physiotherapist. I met with one and we came up with some stretches and exercises to help me and I still follow this routine every day and it has helped reduce my pain and stiffness massively! Another thing that I will say is to not be afraid to try a few things to see if they work for you at all. Whether that is some diet changes or exercises, y If you have any other questions at all please feel free to ask away! You are not alone in this and Sending love and positive vibes, James (Community Member)
1. Stevens Member
 <inline-mention username="James Hollens" user-id="2386640"/> hi James, the drug is called anti Tnf imraldi injections don't know much about hoping someone will do. 
2. Emlove21 Member
 <inline-mention username="James Hollens" user-id="2386640"/> Hi ya… I get injections for b12 I’m on medication and folic acid supplements and have to do blood work for my kidneys once a month and try and fit physical therapy sessions around my work schedule I’m a nurse assistant so I’m always busy especially with my two boys. I just know that my neck hurts more then usual. I can’t really tell if the medication I’m on is helping or not. But so far just overwhelmed with dr appointments.
Auldyn Matthews Moderator & Contributor
Hi Emily! Thank you for posting here. I think you'll find the community will be able to help you through every step and question. My husband is the one with AS, but I have been with him through his whole journey. The one thing I can tell you is to have a go-to caregiver. It was so helpful for Keegan to have someone with him that could take notes, ask questions, do research, etc. You don't have to do this alone. Also, if you don't understand something your doctor is telling you, ask them to clarify. One way to ask a question is through the diagnosis and treatment journey. The big stages are Symptoms > Testing > Diagnosis > Treatment. (You could ask questions like, "Okay, I'm diagnosed now, but I don't understand what comes next." or "I'm feeling overwhelmed by the number of possible treatments. Why do some patients choose one over the other?" The doctor will most likely appreciate that you're being open that this may be routine for them, but it's new for you.
1. Stevens Member
 Hi I've just been diagnosed with ankylosing spondylitis and wondering how it works on here. I have so many questions about treatment and how it will effect me
2. Nicky-Flikas-aks Moderator & Contributor
 Hi @Stevens and Welcome. This is a great place to share or ask any questions. You can find amazing support and lots of information on this disease. We are here for your and know you are not alone. Welcome once again!!! -Nicky (Team Member)