Disease Progression
Hey Everyone lately I have been feeling very unwell. I feel the illness more than ever. I feel extremely weak, very low energy all of the time, and the pain has been unbearable throughout my entire spine now, I’m usually able to push through but it seems like it’s getting harder and harder to push through and pretend that I’m ok when I feel so awful. I guess I’ve been pretending for a while now I just don’t want to admit it because I want to still enjoy my life as a 38 yr old should but I guess I’m not a normal 38 yr old. I feel like I’m doing all the right things I eat well I dance as a form of exercise to keep my body moving but even that has been difficult to keep up with I feel like my body is giving out if that makes sense? Everyday I wake up feeling worse then the day before does this mean that the AS is progressing? Every-time I see my rheumatologist they never do any imaging they just prescribe me something new to take. How are they monitoring the progression of this disease if they don’t do any imaging? I’ve only gotten imaging of my lumbar spine which shows damage so can my upper spine have the same damage now? I’m going to request a full spine MRI but I just wanted to see if anyone else has experienced this?
Hi
,
I want to say that I am sorry you are feeling this way. I know how this disease can be so hard and leaving yourself with so many questions unanswered at times. Reading what you wrote I can relate. Not too long ago I was in the same spot asking the same. My pains where just unbearable and increased. I kept seeing my rheumy but every time i explained the pains I would leave with no new test. The last visit I said enough is enough. I explained how it's been a while since we did an MRI to see if the disease has progressed. He then agreed to do another MRI.
I can imagine how much pain you are in. This disease is very very painful. I was never shown any damaged on my results just some inflammation. I would push to do another test. Nothing to lose just some peace of mind. I hope you get better days ahead and know you are not alone.
Nicky (Team Member)Thank you Nicky appreciate you 💙 it’s always rough when you don’t have answers and you feel defeated at times but just have to push through it. It sucks but what can we do right? I’ve set my mind to handle anything that comes my way with this disease I scream, I cry, I stomp my feet n then I keep pushing because I know it’s going to progress how fast and how much we never know but we push through no matter what this disease throws our way that’s what makes us so strong even when we don’t feel strong. How are you holding up? Sending love 🤗Nadine (Community Member)
🙁 I'm sorry it's not better news. 💜 We are here for you
That’s so sweet we are here for you too hun better days are ahead for us all. With positive vibes we can conquer anything 💪🏽💙 Nadine (Community Member)
first off i am sorry that you are going through so much. no damage has been shown on my xrays and mri's but boy ole boy....this pain feels worse and worse each day. I think it is wise to get the full body xray. Make them look inside so that you can KNOW for sure what you are dealing with. You are your best advocate.
Thank you so much I appreciate your kind words, I did get a full spine X-ray and also a updated MRI of my lumbar spine not good news but I already knew that I felt it. What can we do but keep going and trying to remain strong! How are you feeling today? Sending love 💙 Nadine (Community Member)
