Patients Ankylosing spondylitis
Topic of the discussion
Posted on 3/25/19 4:15 PM
Hi everyone, I’m new here to this website and I am hoping to find some insight and understanding about AS. I was diagnosed a year ago and have been trying to understand and determine if all of the exhaustion and pain I feel is from it. I have lofty ambitions of things I want to do ( like I did when I was in my 40’s) but find that when I do try do to things I pay dearly for it. I’m finding that even doing normal everyday tasks can overwhelm me before I know it and I can’t continue because I’m wiped out and in a lot of pain. Is this a normal part of the disease? Any insights would welcomed and appreciated. Thanks
Beginning of the discussion - 3/26/19Exhaustion and pain https://www.carenity.us/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/exhaustion-and-pain-869
Posted on 3/26/19 2:46 AM
Hi @sandsukii, welcome to the site. I hope I can give you some consoling in knowing that it is very common to be exhausted and in pain with this condition. No one AS is the same, it can be a rapidly progressing disease in some, and minimal progressing in others and contain itself to around the sacroiliac joint, do you know how far yours has progressed?
But the condition is inflammatory, so pain and fatigue is common no matter the progression, but may be more debilitating in more advanced cases.
What are you doing for treatments? Inflammation control?
Posted on 3/26/19 12:58 PM
Thanks for your response Mark. Right now I’m taking cosentyx monthly. My issues are getting worse so I booked an appointment with my rheumatologist next week to see what can be done. I’m tweaking my diet to eliminate inflammatory triggers. I can’t take ibuprofen because I’ve had the gastric sleeve procedure and that’s a big no-no. I feel like it is progressing. I can see a big difference since my diagnosis. I’m not sure what else can be done. Do you have any suggestions that you’d like to share in how you handle it?
Posted on 3/27/19 12:22 AM
@sandsukii I have never been on that medication - if I am correct, it is a newer one.
I have focused on eating a more anti-inflammatory diet, so I try not to eat saturated fat and cholesterol and focus on eating the foods that are the lowest on the dietary inflammatory index for being anti-inflammatory, such as tumeric, ginger, flavones, legumes, beta carotene (found in orange vegetables), flavonols, omega-3s, and vitamin C.
I also try to put myself on a sleeping regimen of at least 7 hours of sleep a day, because I have found if I do not get adequate sleep, I will be in more pain and experience more fatigue for the next few days.
I also see a counselor weekly to vent and speak about the frustrations of being limited and in pain.
Posted on 3/27/19 1:57 PM
@mark48 I too do similar things. I will look into the flavones. Thanks for sharing.
Posted on 3/27/19 11:53 PM
@mark48 Hello, I too am new to the site. I m 58 and I was diagnosed with AS 20 years ago. My worry is that I won’t make it to my retirement at 65. When I go to work (Parts Inspector) within an hour my pelvic area and my lower to mid spine starts to ache to the point that I have to stop working and try to stretch or sit down to rest for a few minutes. By mid day fatigue hits me but I have a job to do and parts to ship out . I don’t want to become a junky and pop pills for pain all day .
Posted on 3/28/19 10:19 PM
@DD41261 I just had a spinal cord stimulator put in February. I did it because the pain in my lower lumbar and sacroiliac joints were agonizing. The injections that I used to get weren’t working anymore. It has made a huge difference in that part of my body. I can go for walks now where I couldn’t before. That might worth looking into 🤷🏻♀️
Posted on 4/24/19 4:16 AM
@sandsukii that is great that you are eating, as much as you can, an anti-inflammatory diet. This has been huge for some. I try to do this also, but I have not noticed a huge difference as others, but I figure it must be better than not doing it, right. Seems like a hit or miss with those that can relaly feel the change or maybe they were at an earlier stage in the condition.
I also take Extra Virgin Olive oil, fish oil, and tumeric.
I guess, my advice, would also not be too hard on yourself. It is very common for this condition to make us feel pain and exhausted. I would highly advise to make arrangements in your house, be it having friends help you move things around (or just begin new) or using assistive devices, to make tasks easier to perform so it does not wear you out as much. It can be as simple as moving dishes and cups to a elbow level so you do not have to strain to reach overhead to grab them.
Was the spinal cord stimulator put in because of AS? or did you have previous injuries? What does that treatment do and how does it work because it sounds like it worked miracles for you.
Posted on 4/24/19 4:17 AM
@DD41261 Is your job able to make modifications/adjustments to work your work? I am not sure the legal side of it, but I have heard jobs keeping employees but assigning them to a different workload, but that may be Worker's Comp, what I am thinking of.
Posted on 4/24/19 4:47 AM
@AS1218 the stimulator stops pain receptor signals to the brain by using small electrical impulses that come from leads that are attached to my spine mid back. They run down next to my spine and are attached to a small computer which is just under my skin above my si joint. I have a remote control to adjust the levels of impulse I need to stop the pain. It’s really an impressive technology. As it turns out the pain that I’ve had in my si joints was an indicator that lead to my diagnosis. It has been a blessing to me that’s for sure.