What's something you wish you were told when you were diagnosed?
We learn a lot from our diagnosis through experience, trial and error, and sharing information. What's one thing you wish you would have been told when you were first diagnosed?
How I would be robbed of quality of life, even if I did everything I was told to do to battle this disease. How I would be affected both mentally and physically. How bad the fatigue and exhaustion would be.
- this couldn't be more true - Living with ankylosing spondylitis (AS) can be incredibly formidable, and there are aspects of the disease that aren't always fully communicated at the time of diagnosis. It's understandable to feel frustrated and overwhelmed by the impact it can have on your quality of life, both physically and mentally. Dealing with chronic pain, fatigue, and the limitations it imposes on your daily life can be emotionally exhausting which can significantly affect your ability to function and enjoy life to the fullest. How are you managing this week? Wondering if you've found ways to ease the toll of chronic illness. Thoughtfully, Rebecca (team member)
how bad the pain would always be tired.
Hi there - Please know you're not alone in this journey, and we're here to offer support and empathy however possible. It can indeed be overwhelming to cope with these symptoms, especially when they were not fully explained at the time of diagnosis. It's commendable you have reached out to our community seeking support for this chronic inflammatory disease. Having such pain and fatigue is truly frustrating to manage - we hope you are managing okay. Thoughtfully - Rebecca (team member)
I wish I had been told that the drugs for AS were not as bad as the drugs for MS. I wish I had been given the MRI and x-rays, etc right then so I could see the damage done. I widh I had been told about the pain in my future. It. wasn't. real. then.
I second you on that one. I have no experience with MS drugs, but everything else.. I wish AS treatments didn't have such a fear factor. The ad mentions Lymphoma because it's possible, not because it happens. I also wish I had been told about what it could become. I was told to ignore it and stay active because there was nothing more they could do. But, I learned everything about AS through experience and other patients. Stay strong! -Jed (Community Leader)
I wish I were told how people in Europe, Asia and Montana have been using low-dose radiation therapy to treat AS since the 1940’s. TNF inhibitors don’t work for everyone.
I apologize for the delay Rebecca. Yes, this is a very interesting and popular area of research and study. NIH PubMed has many recent papers and abstracts each time I check it. Impressive results are easily found.
https://pubmed.ncbi.nlm.nih.gov/33396815/ Also…
Charles L Sanders and Jerry M Cuttler have been working in this area a long time.Wonderful - thank you for the links. I will take a look and read some studies about LD radiation therapy and AS. I really appreciate you getting back to me and hope that you are managing well. Thoughtfully, Rebecca (community moderator)
