I have an adjustable bed and bought one of the "My Pillow" mattress toppers which has allowed me to occasionally sleep in my bed with my husband. Unfortunately i been sleeping in a recliner for bpught 7 years.
So the CDC recommends a vaccine for people with diseases of immunosuppression. Does that include Axspa?
I am curious how everyone finds ways on a daily basis to cope with their challenges. Everyone has unique circumstances and experience this condition in unique ways. I am interested in learning the unique ways everyone has for coping. My biggest change for how I cope is a gratitude practice and part of that is connecting on this platform with others who can relate. I know how bad this disease can get and I am grateful everyday that I am nowhere near experiencing the worst of it. I accept where I… read more
If I sit or lay down for too long, my fingers and toes get very cold and soon, I feel like I am freezing to death. When I get up and move around, I feel okay after a little while. But, if I move around a lot, I over heat, and it takes forever to cool off and i feel very weak.
What else can help with pain
And what type of mattress would help everything I have tried just puts so much pressure on the places that hurt. I dont sleep well at night Im costantly tossingfrom side to side because my hips hurt and wake me up.
I am wondering if anyone with experience of both Spondylitis & Elhers-Danlos may be able to help me understand the difference between symptoms of each. I just found out that Elhers-Danlos runs in my family on my dad’s side, while Spondylitis runs in my my mom’s family. I’m having trouble getting a diagnosis beyond fibromyalgia but I’d like to narrow it down more if possible as (1) I would like to try to address/tread root causes of pain & prevent future damage, and (2) I’m scared my… read more
Being newly diagnosed, explaining this disease is difficult and at times awkward. My parents especially don't understand (they're in their 80's, still doing phenomenally well), Mom thinks I'll heal up and get over it. I've always lived in a culture of pushing yourself to get the job done, that if you're too tired or hurt, you're weak, lazy, not strong enough mentally. I find myself frustrated at myself for those reasons but am learning to be ok with resting when I need to. But helping those in… read more
My husband is 69. The doctor recommended he get on Humaira. His blood work showed no inflammation. Is this normal in some with AS? It appears that Humaira is for inflammation. What alternatives are some of you on?
Hello everyone :)
So I’ve been diagnosed and my treatment have failed to work … my rheumatologist evoked the possibility of getting me on bio therapy . I’m kind of scared of what my life might look like during the treatment …. I’m not really looking for people explaining what a biotherapy is , but more for people telling me what life is like when on this treatment .
Here are some questions I’m wondering about :
What kind of changes should I expect from it ?
Will I still be able to go to… read more