May 13, 2019 at 10:02 am #426426
I would like to know is there are other people dealing with this terrible condition I have lost so much because of this and would like to speak about it and maybe find better ways to deal with my pain or give tips on what works for me and how I am able to still be working and so on
May 19, 2019 at 8:28 pm #434673Noki4Participant
Hi Ray Ray,
I live with ankylosing spondylitis. One thing that my doctor has always insisted on is that I keep as active as I can because it can help with the pain. He is also always reminding me to pay attention to my posture.
My best to you and I look forward to speaking with you.
May 20, 2019 at 8:32 am #434676
Thank you for your response , it is really nice to speak to someone with A.S it is not a common thing so finding some one else is always a blessing for me.
My Doctor is advising the same, if i may ask how long have you been living with A.S , what medications do you feel have helped the most.
And the flair ups how do you keep them under control, I am struggling with that , the pain is always a given just the level that differs from day to day, my biggest struggle is the flair ups.
But it is a bit confusing because I have been diagnosed with Fibromaligia as well, so I dont really know when what is acting up only I can feel the pain is building and building then it just hits me out of nowhere .
I have been self injecting with Voltaren some times it helps but not always, any tried and tested advise you can give me .
May 20, 2019 at 11:07 am #434677Noki4Participant
I was diagnosed about 12 years ago with ankylosing spondylitis. My journey started out with degenerative joint disease and as damage was done through the DJD and osteoarthritis and a few other diseases & conditions I received the ankylosing spondylitis diagnosis.
The exercise is what I have found helps the most to ease the pain and help me maintain flexibility and to keep the flairs at bay. Of course there are times no matter what I do the flairs hit. When the flares hit I use heat and ice and nonsteroidal anti-inflammatory drugs (NSAIDs) but I have to be careful using the NSAIDS because they can cause stomach issues.
For me it is doing whatever I can to keep the inflammation, pain and stiffness to a point I can tolerate it and that is where the ice, heat, and exercise come in to play. I have found soft yoga to be a big key in keeping the stiffness low.
Due to my other diseases and conditions I am on several medications but have found Meloxicam (Mobic) to help a great deal.
I totally understand about trying to figure out if it the fibro or the ankylosing spondylitis. When you have multiple illness or conditions it makes it hard to know which one is acting up and causing the increase of pain.
My best to you,
May 20, 2019 at 1:06 pm #434678
Thank you I appreciate it. I will definitely consider what you are saying I must admit my exercise is not what it should be. I just hate all these medications I can’t help but thank no sometimes the damage they doing but I guess its the lesser of two evils.
Best regards thank you for the help I’m still learning to deal with it so I appreciate ur input
May 22, 2019 at 1:39 pm #434699TPC_YaYaModerator
Hello Ray Ray,
We are glad to see you found Noki4 to talk too about ankylosing spondilytis. We would also like to let you know that we have a couple other ways to interact with others who understand the journey of pain.
We have live hosted chats here on the website every Monday-Wednesday-Friday at 11:00am ET in the TPC Group Chat Room.
We also have support calls every Tuesday of the month. Our next call will be on Tuesday May 28th at 7pm ET, 6pm CT, 5pm MT and 4pm PT. You do not have to register and you can share as little or as much as you feel comfortable. You are also welcome to come on the calls and just listen if you would like.
Call in number: 712-775-7031 Passcode: 491-268-096 and press the # key.
Here is a link that has the schedule and info for you.
If I can answer any questions please let me know here or you can email, firstname.lastname@example.org
TPC Community Moderator
“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
February 7, 2020 at 2:00 am #438419
Good Day All ,
I am having hard time with my feet , they are burning like crazy , I am unable to wear shoes or even sandals , the bottom of my feet burns like crazy , and even a night my feet can not touch each other at all, I sleep with pillows between my knees to separate my legs and feet from touching each other , And they are swollen I can see where my ankles start or stop its just round. I tried doing some research and there is a lot of things that can cause this, but what I am thinking is nerve damage, I know the Ankylosing Spondilytis attack your nerves , But i do not have medical Aid and can not go to hospital because I am unable to stand at all my for 2 seconds before I start feeling unconformable ,I mean I can not even stand in the Que at our local KFC to get lunch , I am worried I might end up in a wheel chair as I dont have the money to see specialist and the still pay for treatment it is concerning I dont know what to do , but funny enough when I am walking I do not feel the pain only when I stop and stand ,
So what role the A.S and Fibro are playing I dont know , I cant afford any medications except for the Morphine Syrup so I am not under any real treatment either so i dont know what to do .
If anyone has any suggestions I would appreciated it , anything is better than nothing.
February 7, 2020 at 4:59 am #438420
I am just so tired of being in pain 24/7 there is just no rest , so tired … and helpless living in South Africa is a death sentence if you think you will find a Doctor or hospital or clinic that gives a shit good luck with that I rather just die at home then in some dirty shitty hospital , were no one cares and no I am not having a pity party simply stating facts hoping some one could here and make a difference anyone in this country that is sick will tell you the same thing
April 22, 2020 at 12:10 pm #438496scott4QZParticipant
When I was trying to relieve my pain feelings, I was consuming kratom leaves
October 13, 2020 at 12:14 am #438751takecouragecoachingParticipant
I’ve had AS since I was 15. It is a long journey. I struggled with maintaining habits that help my pain and managing my pain for many years. I finally got a coach and am already seeing improvements. I tried many medications, Meloxicam, Humira, and hundreds over the counter, but for me it is really the habits and self-care that helps.
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