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ankylosing spondylitis

TraciTTraci Posts: 92
edited 03/04/2015 - 2:42 AM in Arthritis, Osteoarthritis
I have osteoarthritis but just recently have been told that I have ankylosing spondylitis. This stuff has really took all my get up and go and got up and left. I know that this forum is for osteoarthritis but I was wondering if anyone on here has AS and if the fatigue is debilitating or is the fatigue something else I need to figure out? I am just so sick and tired of being tired and sick. Thanks in advance for your time.


  • I have ankylosing spondylitis and an especially severe case. I'm about to have major spine surgery and don't often get into this forum, so feel free to send me a PM.
    Cervical laminectomy, facetectomy, and foraminotomy (3-6 of each) with instrumentation and cadaver fusion due to cervical spondylotic myelopathy, radiculopathy ,and spinal cord contusion - surgery done in April 2014.
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  • Hi, I know this is an old post. I have been searching on here for people with AS. My partner has AS and a severe case for his age he is 31. He is fatigued a lot which is from the AS and treating medications.
  • Hi - I've just been diagnosed with mild AS. Sucks. I don't feel especially fatigued, but do feel tired a lot, and am in pain most mornings. How are you coping now?

  • Traci, I hate to tell you, but as the AS progresses, so does the fatigue. At least for me it was like that. I am HLA-B27 positive but you don't necessarily need to be gene positive to have this disease. You sound so much like me, sick and tired of being sick and tired. And it's very hard for the people around you to understand what you deal with every day, 24/7. My AS has now affected almost every joint at one time or the other. It comes and it goes: 1 morning you wake up and your right shoulder is killing you. The next morning your right shoulder feels fine but your left elbow or hand is killing you. I call it the whack-a-mole disease; you never know when or where it's going to hit next. I have to spend the first 2-3 hours every morning under a heating blanket after taking my anti-inflammatory and pain meds. Then I get up and stretch for an hour. These things are done just so I can move somewhat easier during the day. My rheumatologist put me on Remicade infusions when I was first diagnosed. I have never been a sickly person or someone who was apt to get infections. But once I went on the Remicade, I began having infections, one after the other after the other. You can't have any type of infection while on the meds for AS and once the infection is cleared, you have to wait at least 7 days before you can begin treatment again. So for the whole of 2014, I was on treatment and off treatment. I never really got to know if the Remicade was helping or not. So in January 2015, the dr put me on Enbrel, which is a weekly injection I give to myself. But unfortunately, I began having infections again after the 3rd week of injections. The last 2 infections I've had I've actually had to go to the hospital for surgery. So now he's sending me to an infectious disease dr to get me cleared once and for all. I struggle a lot with depression and the pain...oh, the pain can be bad. But I'm still hopeful. This is just the last year of my story; I had back problems beginning at 26 and several back surgeries but no one ever sent me to a rheumatologist. I say all of this to tell you: Don't give up. Keep fighting and fighting. I think my story is one of the bad ones, but there are many people who go on the AS meds and really take a turn for the better. And that's what I'm still hopeful for and I want you to be, too. When you have days you're so tired you can't keep your head up, go to sleep. If it hasn't already happened, the day will come when the pain will wake you up at night. You need to sleep when you can, no matter what time of day. Listen to what your body tells you; you can overdo in a heartbeat and then it will take days to get over. Go easy on yourself. And be kind to yourself. Hope this helps if even just a little.
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  • edited 07/27/2015 - 6:21 PM
    To NCGirl/Traci et al.

    Hi everyone! I am a 30 plus year male AS patient also HLA-B27 positive and can tell you the most difficult part of the journey beyond the extreme pain flare ups is definitely the fatigue. I have all of the above in my subject line and can say honestly my life has been a huge struggle. I was a semi pro athlete/multiple business owner etc and married twice Father of 3 beautiful Angels. I never gave up through all my years of battling back ailments and maintained an extremely active level of fitness and activity. I was also born with a genetic defect at L5-S1 which complicated my situation even further.
    I had major surgery 3 years ago this July, 8 hrs on the table to rectify my lower back issues at least where I had 6 three inch titanium screws set and it turned out horribly. I was left with further nerve pain down my right leg from my mid low back right to the tip of my big toe and all points in between. I am physically still a pretty fit person with being athletic my entire life and I think that helped me greatly through my struggles. You would never know what an MRI of my spine looked like by looking at me in person and that MRI isn't pretty. I had the surgery in hopes of extending my athletic career as well as my work career. I very strongly recommend you NOT turn to surgery if at all possible. If I could turn back time I would have NEVER had the surgery knowing what it did to me now.
    I have now been off work and am retired for 4 years. I miss being part of the work force and very much being on the Golf Course and Curling rink but I have remained as active as my body allows. More times than not I over do it but that is just my nature. When winter comes along my condition worsens by a factor of 3 at least. The cold absolutely forces me into hibernation and I dread the cold weather.
    Fatigue has been a major hurdle every day of my life since being diagnosed in my early 20's. I am now 51 although look like my early 40's I am told. All of us who have spinal issues and AS know well enough it is not going to get better before it gets worse with the onset of age.
    I believe the one thing that we all need and will benefit from most is a partner whom is very understanding and may even have similar conditions to deal with. I honestly do not think ANYONE who has never dealt with the 24/7 issue of spinal pain and difficulties can understand what we are going through. I have been single now for almost 8 years although I have dated and been in a couple of brief (less than a couple years) relationships over that time but will admit that finding a partner who really understands is my only option for getting through life in years to come and I am sure many of you get it when I say it's almost easier remaining single to cope. Although not ideal, remaining single rather than being with a person who does not truly understand what you deal with daily is sometimes better for our health than having that stress of a person not 'knowing' what you really have on your plate daily.
    When I found this forum I was actually surfing and hoping to find a site that has forums for people like us whom have these debilitating issues and are interested in meeting others in the same boat for purposes of finding friendship or companionship/dating and hopes of a lasting understanding relationship. If anyone knows of such a place to mingle and chat please advise. If I had the technical know how I would start a site for us...lol. In the mean time if anyone has any questions about any of the above in the subject line, especially Ankylosing Spondylitis, please ask. I have had a long journey with it, taken every medication (including 3 years of Humira injections), tried every therapy and seem to know more than most Docs who do not specialize in it for the simple fact I have read so much literature on it, been pro-active living with it and simply put, tolerated it for over 3 decades. It's all about your tolerance level with this monster. Cheers from the Great Lakes.

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  • I have also battled with Iritis over the past 15 yrs or so, which is often associated with AS and VERY painful. Its an inflammation of your Iris and Thankfully its been a few years now since having a flareup. Praying it stays that way. =). If anyone has inquiries about this facet of the disease again, please just ask. I am happy to pass on my experiences and knowledge on it as well.
  • Hello Great Lakes Lover,

    I am starting Humira this week for AS. Can I ask which medications you have tried, what your responses were, and how you and your doctor determined a change of medication was in order? I'm suffering from some pretty severe pain, and the abnormalities on my imaging tests seem to be progressing. I'm really hopeful this medication can help me. I'd really like to hear more about your experience with AS. Cheers!
  • dilaurodilauro ConnecticutPosts: 11,349
    Welcome to Spine-Health

    One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

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    Here are some questions that you should answer:
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    I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

    Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

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    I am not a medical professional. I comment on personal experiences
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