Patients Ankylosing spondylitis
Topic of the discussion
Posted on 4/8/20 7:40 PM
Hello AS friends,
I've been feeling a bit down being stuck at home social distancing, so I thought i'd start this discussion for us to talk about AS and the coronavirus and how we're feeling.
I'm still doing my Humira and working from home. It's getting a bit boring, but I've been able to clear my Netflix queue and organize my closet finally! I've been getting my food and groceries when I can get a slot and my family members have been dropping off things too when they can. My cousin is a nurse so I'm a bit worried about her since she's on the front lines, but she's helping to keep us all safe so I'm proud of her.
How are you all doing? Have you been in touch with your doctor or anyone?
Beginning of the discussion - 4/15/20AS and the Coronavirus: How are you doing? https://www.carenity.us/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/as-and-the-coronavirus-how-are-you-doing-1773
Posted on 4/15/20 7:36 PM
@nomasAS Hello nomasAS, thank you for starting this discussion! I think many members with AS may be also be worried about COVID-19. This is a great space to share how we're feeling.
Hello members, I hope you don't mind me tagging you! How are you handling social distancing? Have you had to change your medications or treatments? Feel free to share here!
@Dyllan @Justmichelle91466 @Jodyolson69 @Jillybug @toniboroni123 @Wiederich @Kaykayloveee @jford76 @Claracaïl @Twinburl @stimpe @Helen_alin @Eshaan Dave @Diturbe0628 @MaryW7 @hejt1395 @Natalieanne67
Posted on 4/16/20 8:38 PM
I agree about thanking you for starting this discussion. I've wondered about having AS and if it puts me in a high risk category. I'm 57, so I'm just under the age risk. Over the last 12 or so years I've lost nearly 200lbs and no longer have type II diabetes or high blood pressure. My AS is end-stage. I was misdiagnosed for almost 30 years so my spine is obliterated. I'm fused from about T12-C1 and pretty kyphotic. Let's just say I don't look down to the other end of the grocery aisle when I'm shopping! LOL (its hard to imagine how many things are hard to do when your head is stuck in a prayer like position, besides drinking from a soda can without a straw!) Therefore, I don't take any biologics. I've also got PsA, Sjogren's and Reynaulds, but my new Rheumatologist doesn't seem to think i need any treatment. It's frustrating! Last time I saw him he said he didn't need to see me again unless I had an issue. "You're too far gone" was his words about my spine. I've been having issues with my toes, and had surgery last year, they're worse! Probably because it was a PsA issue and needed duel treatment or at least an ortho with some rheumatology understanding, but it's hard to find rheumatologists who take Medicare! I diagnosed myself after years of digging online. Just googling my symptoms! I was sure my neck didn't stop functioning because of a bad divorce, but thats what I was told my a neurologist who then, upon seeing my mri said it was a mass of bones in the wrong places. He wanted to do surgery cut me ear to ear from the front and tip my head back and "unscramble " my neck! I was 41 years old. I cannot imagine what life would have been like if I had a let him do that! Any doctor that would tell you the reason you could not turn your neck or tilt your neck was because you were going through a horrible divorce and men are called a pain in the neck because women carry their stress in their neck, should not perform surgery on that same neck!! Years later when I was diagnosed i sent him a Facebook message. Over the years he told me i had pseudo sciatica and spinal arthritis. My major complaint the 1st 2 decades were bouts of debilitating sciatica, even as a teen! I'd never heard of AS, but my brother had full body psoriasis and the worst psoriatic arthritis doctors in 3 states had seen! He had his feet deboned at 32 because the balls of his feet and toes had no joints left and bones were free floating! His thumbs were reattached surgically, twice! At the time of his sudden death at 49, his wrists had been detached for years and he wore braces to function! The doctors won't reattach wrists unless the pain is unbearable, because you lose so much function. Im sure he died from year of Methotrexate, biologics, opiates, marijuana, alcohol and benzos for the anxiety that all of it caused! Not long before he died he had a 4-wheeler accident. They did an xray of his spine. As we were sitting there the ER doc said, almost flippanttly, but not in a negative way, "you've also got bamboo spine" and looked at me when he said it. Like he was telling me, yet talking to my brother. He was an older dog in a small country hospital, thus the term "bamboo spine", but it didn't surprise me he had secondary AS since I have secondary PsA. What are the odds 2 siblings and both having these damned genes activated, turned on or however they come alive and present this disease! When i was a young teen, i was a walking talking abscess! Im sure that has something to do with it. Id get them on my earlobes! At 25, when I lost all my top teeth, I had 28 root canals!!!! I had my tonsils and adenoids removed when I was 22, because I had tonsillitis 8 times in 6 months! I've never not had back pain since. Weird, huh? The human body is a miraculous thing! The power to heal itself can be wonderful and frightful!
Posted on 4/16/20 8:42 PM
@nomasAS I've started using CBd oil without the does wonders and less pain by far
Posted on 4/17/20 6:03 PM
@MimiDede Wow Mimi what an amazing story. You are so brave, my AS is not nearly as advanced. I'm sorry you're dealing with all that of course, but I love the way you write! I wish there was a way we could go after the doctors who discount us, misdiagnose us, or say that our neck pain comes from our divorce! That sounds like neglect to me. Did the doctor respond to you after you sent him the Facebook message?
I guess to address the coronavirus elephant in the room, I'm doing pretty well considering. I'm still taking my medications and I've been instructed to do so unless I show signs of symptoms. Staying indoors for the most part, and we've been having our groceries delivered or a neighbor drops them off for us, which is really nice.
Posted on 4/17/20 6:04 PM
@Earl.man Does that really work? I've heard it helps with conditions like epilepsy, but I hadn't thought about it for AS. I'll have to look and see if it's legal where I am...
Posted on 4/20/20 5:28 PM
Hi y'all. I've just joined this site today, so I hope I'm doing it right! I'm doing well, since this craziness started I've been staying at home and my husband's been doing the errands and grocery trips for us, lord bless him, because we weren't sure if the biologic I'm on would make me more likely to come down with it. I used to go to the gym a few times a week to do some gentle workouts, but since our gym has closed I've been trying my best to do it from home with resistance bands and stretching. The family and our dogs have been keeping me busy though! I've been getting into Audible audiobooks and working on batch cooking things like soups and stews for the crew on my bad days when I don't feel like cooking. My stiffness and muscle spasms are a bit worse than before all of this, I guess it's from being less active, so I'm taking more to manage the pain and relax the muscles. My doctor told me to stay on the biologic unless I develop symptoms, which hopefully won't happen. Fingers crossed!