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What do others do when their flare-ups never stop

i have constant, non-stop flare ups that doctors say is because of the rapid progression of this disease. Already they have found it is attacking all my major organs and the pain is unbearable.
I'm just wondering if there are others going through something similar & if so, how do they deal w/ the non stop flare ups?

  1. - I am very sorry you are suffering, but oddly happy to hear someone else with the same issue. I have talked to other AS patients and way too many doctors and seem to be an anomaly like you. I am in 24/7 excruciating pain and have to take very strong pain medicine just to be able to walk very short distances and stand for short periods of time, otherwise I am bed/couch bound. I keep trying to improve and move more as the whole "motion is lotion" mantra, but the pain gets so severe that my body basically powers down and won't let me continue. So yes, someone else can relate to being in a perpetual flare.

    Please message me direct if you ever need to talk, having someone understand helps a lot 😀

    1. Have you had your rheumatologist recommend a good pain doctor for you? I will say finding a good pain specialist helps a lot and bringing a family member or someone with you to your pain specialist appointments as having another person confirm your difficulties really helps in getting the doctors to hear what you are saying. Truly hope your AS symptoms get better for you. Wish me luck that my double dose of Cossentyx starts working and that we both feel better soon 😀

    2. I did talk to my rheumatologist about a referral to a pain clinic, she said they all, ( around here anyway) have long waiting lists.
      So I do have my name in but don't know how long it'll be.
      Thanks for the suggestion of bringing someone who knows about my pain issues, when I do get an appt to the pain clinic. I didn't even think of that!! Great idea!!
      And I DO wish u much luck w/ the meds. Hope they ease your symptoms.

  2. Hey !!

    I just came across this thread and wanted to assure you that you are definitely not the only one who is going through this. My first 8 months living with AS were a total and complete nightmare. I thought I was dying (prior to my diagnosis) and almost completely lost my mobility in a matter of 4 months at the age of 29. The progression was terrifying and I believe it to be a miracle that I am fully functional (for the most part) today.

    As much as I hate to admit it, I relied heavily on pain medication (tramadol) and a lot of doing nothing on a heating pad. After I got on biologics my life completely changed.

    I will say my health has greatly deteriorated since my AS began 2 years ago. I have enthesitis/tendonitis and bone spurs in my foot, interstitial cystitis (inflammation of the bladder), psoriatic arthritis, vein disease, and fibromyalgia. I'm probably honestly forgetting something though 🙄

    I hope things improve for you and you start feeling more yourself. Good days are possible, I promise! Sending you big hugs!!

    -Katie, Team Member

    1. I'm glad the biologics are doing something for you. I'm on Humira & don't really see too much of a difference, except my hands & feet aren't as stiff & swollen. That's awful the range of issues you're dealing w/ because of AS!! I tried all the pain meds possible, Tramadol being 1 of them & none, not 1 touched my immense pain. I use ice packs, ( I have so many, lol,) and then heating pads. It seems that's all I do all day is switch between the 2.
      As I've said, I'm praying once I get my left hip replaced July 19th that the worse pain will subside some.
      The thing I hate the most is I do everything the doctors say to help bring down my inflammation, ( eat certain foods, drink certain drinks, probiotics, prebiotics, etc..,) yet my C-Reactive Protein levels just keep going up. They can't figure it out!! Personally, I think it's all the stress that comes w/ these constant flare ups.
      Thank you for the uplift though, we all could use 1 most days & I hope things get a little better for you, ( there are miracles so u never know, right?)
      Keep the positivity!!


  3. It is very difficult when you experience such a rapid phase of AS. In the past 5 years, my arteries rapidly became blocked, my kidneys are in stage 3 CKD, liver is going isoenzyme nuts, and had enthesitis show up in elbows, knees, and achilles. And since my kidney function dropped, uric acid is not being cleared very well -- and so Gout became an issue!

    I fight back by getting on my mountain bike! When I can't walk well, do to multiple fusions, forward neck, etc.. I get on the bike and start pedaling! It is so easy on the body! I ended up getting Covid, at age 60! That was not fun at all, but at least I survived it on my own without the hospital!

    Please keep trying to do things that are at least bearable to you! We must keep moving, and keep on doing whatever we can do!

    1. I'm so sorry to hear about the hip replacement. Is that a waiting list issue? AS is really a severe disease which can really affect just about anything! Have you had iritis? Shingles? Enthesitis? Swelling in just about any joint for no reason? Grrr it is frustrating!

      I haven't been able to stand up straight for a few years now. I am able to do a lot because of my hard core work, but still can't stand up straight.

      If you need to reach out ever, I am here. I just found this site, and decided to respond to a couple people. This is the first time I have ever actually joined a site like this. I must say it is helpful to know I am not alone in this AS fight!

    2. Well I was supposed to have the hip replaced but then was put on Humira & the surgeon wanted to see if that would help. It didn't. But by that time COVID19 hit & they put the surgery off.
      Then they put it off when they found the AS was affecting my lungs & heart. So I had to wait for an o.k. from them, which I finally got 3 months ago. Right now my hip is so bad, it hurts to stand, to sit, to sleep, to do anything.

      I have euritis, ( don't know if I spelled that right,) of the eyes which the opthamologist is now seeing cataracts in my left eye so I can't alwasy see that great. But mainly I try to keep a positive attitude and pray.
      I also make sure on the days that things are real bad, that I take that day as a " care for me only day." Thankfully hubby understands.

      I feel for you about not being able to stand erect/ My back is getting real bad but I try to always stand as straight as I can and do core exercises standing up, which involves a lot of deep breathing. It, along w/ ice packs & then a heating pad work briefly.
      I have found this site very encouraging, unlike a site I used to belong to which shall remain unnamed, it was too depressing to be a part of that & who needs that right??

      Stay well and stay positive, whenever you can.

  4. I can very much relate to having your organs under attack. My arteries are mostly blocked, I am in stage 3 CKD, liver is going enzyme nuts, thyroid needed levothyroxine.
    Along with the organs, enthesitis has made exercising more difficult. BUT, I found something that has helped me so much! The simple, innocuous bicycle!

    I ride my mountain bike on short little rides on my property throughout the day. It helps my enthesitis, has helped my mental outlook and depression, and helps me walk better! My AS really has taken a toll on my spine. At 60, I have a forward neck, fusions everywhere, and can't quite stand up straight anymore. But I get around way better than before!

    The other important thing is doing core exercises every other day!

    Please be strong, and do whatever it takes to keep moving!

    1. I'm glad for you. I have an exercise bike, light weights etc...but I've also been waiting for my left hip replacement for 2 yrs now, which just adds to the excriating pains of everyday living.
      I'm supposed to have it July 19th and pray they go thru w/ it. As for core exercises, I was doing planks, side planks & push ups, ( to keep upper body strength,) but the cardiologist said to stop. Because I have a widening left ventricle that's also leaking and is at 3.8 centimeters, ( she said when it hits 4 or sometimes 4.2 that's it..kaboom.
      That's excatly how she put it because I asked for total honesty. So I'm not to put ANY pressure on my chest all. No wall pushups, no planks, no light weights.

      Yet the surgeon wants me to lose 10 or so lbs,, lol, I can barely walk, ( which I do, around my apt,) but that's all the exercise I'm allowed at this time, but thanks for the info!!
      I greatly appreciate any and all help or possible help!

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