Flares are unpredictable and often seem unmanageable.
To help people who feel they are out of options, we are asking..
What do you do when you flare? What puts out or dampens the fiery pain you feel?
I do try & et anti-inflammatory foods though. Whether they help is another issue.
Mostly I use ice packs but heat seems to work a lot. I'll lay down in bed, ( I have a heated mattress pad,) and just relax. Sometimes I fall alseep from exhaustion, sometimes from the heat, lol.
Usually after an hr, I'll get up and move around as far as my body allows. Basically I just take care of myself.
As far as my family, I have a dry erase board where I write what kind of day I'm having, such as, " today is not a good day. u may need to ignore my grumpiness and cook something yourself." lol.
A lot of the flares, I believe, come from my frustration w/ my uveitis, ( which stresses me to no end because on those days, I can barely see, so no reading, no typing, no watching t.v., no nothing!) Those are the days I feel SO tired even if I haven't done more than a few dishes or wash up. Those are the days I give myself permission to be alone and do my self pity, crying thing. Usually by the next day, I'm better.
Same here. I wake up w/ very little eyesight, become grumpy out of frustration but then calm down, ( it takes a few hrs, lol,) but then again my eyes willl start up just when I'm baking or doing something where I need to see & again become unbearable. lol.
So yeah, maybe I should get a few more whiteboards. Hahaha
I have flares almost daily, and they’re virtually crippling. I walk with a cane, and about to graduate to a walker. I take 4-5 10/325 Percocet tablets every day without fail, and I otherwise just press on. It sometimes takes me ten minutes to get in or out of my car, but I manage. My wife just presented me with divorce papers this weekend (kind and loving soul that she is), and the extra stress has made things even worse. I went apartment shopping today, and the only things available are ones with 13-20 stairs to get to the second floor, which is where all their apartments are located. They seem to be nice places to live (for apartments), but it takes me about 45 seconds per step to go up and 30 to go down. I don’t seem to have much choice, unless I want to move to the ghetto. I’m severely depressed, borderline suicidal, and utterly hopeless. I go to bed every night hoping that I just won’t wake up. I even got myself vaccinated, praying for a fatal side effect. Obviously that didn’t happen. I’m getting a spinal stimulator implanted soon to help my back and badly broken coccyx. I have a slight glimmer of hope that the procedure will help reduce the pain somewhat, but I’m certain my personal deathwish will remain fully in effect. I wish there was a way out. I’m tired.
Thanks again for being so open and sharing with us.
Sending warm thoughts your way,
Anthony (Team Member)
Hi there. I can't tell you how sorry I am to read your post. It must be so very tough on you right now. But I am glad you have shared with us. Have you thought about asking for counselling? Your GP should be able to refer you. I know that won't sort the AS, but it might help somewhat with the stress and depression.
You don't mention your doctor so I would urge you to go see them as soon as you can. If like me you struggle with talking to someone, face-to-face, about mental health, I believe it is possible now to have a phone appointment rather than go into the surgery.
I hope things have changed for the better in some way for you since you posted on the 23rd.
Steve - Community Advocate
When I have a flare up I take a step back from everything and give my body the time and rest it needs to get itself back in shape. I also try a bit harder to eat more healthily, as my flare ups usually involve a lot of swelling and inflammation I try to add more anti-inflammatory foods into my diet like ginger and turmeric.
I am also a big fan of pain creams and gel, I have experimented with a few Eastern medicines and things like moxibustion too. I think these can help with short term pain relief but definitely resting up and listening to my body and knowing not to push it too far is what helps me through the most.
Wishing you well,
James (Community Member)
My husband is the one who has AS, and there are a few things. If his flare up is due to a severe shift in weather, it's a bit of a "wait and see."
Other than that, he tries to make sure it's not stress-related, and if it is, address the stress somehow. My insurance covers parts of massages, so that's been a big help for him when stressed is involved.
I know there's a fine balance between just enough movement and too much, but if he stays in bed, it'll usually get worse. Small walks are the best bet for him.
Auldyn, Thanks so much for sharing your husban's story.
I'm doing the same with the stress and have focused on it as my main treatment plan right now. It kinda falls into the theme of my first article "What Did I Do To Deserve This?" I want to make sure my thoughts and feelings weren't contributing to my pain. So far my regiment of heart health and mindfulness seems to be working!