“Our condition is just like that sometimes. One day you’re good, another day you’re struggling. If today’s not a good one, know there are more ahead.” -Community Member
How are you doing today? Leave a message of support below 😀
One day at a time. I have been using my TENS unit all day. It eases the pain in my lower back and distracts my brain. Getting some distraction helps give my brain a break. When I use the lidocaine patches, a warm bath, and take my restless leg medicine I can sleep. Sleep is incredibly helpful for rejuvenation. When I’m in too much pain my brain is foggy and I don’t want to be around anyone. Luckily, I’m already an introvert so I can retreat into doing the things and hobbies that bring me joy. I love to sing along to my favorite songs while I sew my day away. When I’m too tired to sew, I crawl into bed and do my embroidery or color while I watch my favorite TV shows. When I’m REALLY down, I like to pick up a good book and relearn that this disease is not for the faint of heart and most importantly, you MUST keep your mind strong to endure the unrelenting abuse this disease does to your body. When I’m unable to hardly move I get out of bed and head to the pool. I sometimes curse the entire way there, but know and understand that I simply have to move to decrease that damn inflammation. I hope this helps someone. Keep that mind strong!
Hope your doing well. Sending you hugs and wishing you well on this weekend.
Nicky (Team Member)
Moving slow. Depression with ached and pains. Its a struggle on these days which are coming more often
I hear you,
I have heard people have "flares" of AS or I have good days and bad days etc etc. I can only pray for having flares or good days, I am in pain 24/7 except when I sleep for 4-6 hours and lie down for 2-3 hours. Never ever stops...When I could takes NSAIDS years ago I did get some relief, but they caused chronic kidney disease. I tried Embrel for 4-5 years but not much help, I was switched to Cosentyx 1 month ago but so far no change there either. I don't know what to do, I can't walk to my mailbox with fatigue and feeling like my legs weigh 100 lbs. I have the best A/S Rheumatologist in the area i live. I was diagnosed in 1982 after several regular doctors could not find the cause of my problems...for many years I made it with help of Nsaids, PT and massage therapy..now nothing seems to help.
I'm so sorry to hear you're struggling with constant pain. I truly hope you can get some relief soon and am glad you have a good rheumatologist supporting you.
I'm not sure how long Cosentyx takes to work normally, no doubt your doctor is monitoring how this is going and will consider other treatment approaches if this one fails.
I wonder if they might also be able to refer you to a pain clinic for some other strategies? I do appreciate this might not be something available in all areas.
Sending you support and every hope things ease for you @56chevyo.
warm wishes, Anne-Marie (Patient Leader)
I’m so thankful I don’t have to work anymore. I had to push and go no matter how bad the pain was. I made it only with massive doses of NSAIDs, prednisone with flares, and frequent SI injections. Now I can rest when I need to, get things done around the house when I’m able. Even if that causes me to have several days of increased pain, I can lie down with the heating pad and not stress about how soon I’ll be better.