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Do any of you have these symptoms?

All of you nonradiographic, seronegative ankylosing spondylitis friends and friends of friends…. I keep typing, deleting, and then trying again to get this post right. I can’t seem to ask my questions without going into telling my story. But I don’t want to lose your attention because getting your feedback is so important to me right now. So, I’ll ask my questions first and then tell my story as briefly as possible.

Do any of you have Disc Degenerative Disease along with your AS?

Do any of you experience chronic tendonitis and/or ligament inflammation? Such as in your elbows, shoulders, wrists, knees, hips/groin?

I get tendonitis so badly that sometimes the skin above the area becomes numb. I’ve had the numbness last for as long as one year.

Of course, I mean all of the above symptoms along with the symptoms that began for me in my early twenties and continue to this day: the lower back pain that is worse in the morning and at night and that alleviates gradually with movement; the brain fog that changes from day to day; the pains in my tendons/ligaments/and joints that come and go all by themselves, sometimes over a period of weeks and months (and, yes, even for years) to as little as on and off throughout a single day.

I am currently 44 years old. I am HLA-B27 positive. I was diagnosed with JRA (juvenile rheumatoid arthritis) at 12 years old. My ANA was elevated at that time, but since then all bloodwork has been normal. At 21 and 23, two different rheumatologists diagnosed me with undifferentiated spondyloarthropathy with a smaller component of fibromyalgia. The second rheumy suggested I might have been developing Ankylosing Spondylitis because of the left sacroiliitis I had at the time. I was a college student then and couldn’t afford my healthcare and eventually had to stop.

I graduated and moved to another state. Went through years and years of what many of you have shared: doctors that basically thought I was a doctor-hopping, self-diagnosing hypochondriac and a young female claiming to have a man’s disease. I got married, had kids, injured my back in 2009/2010 picking up a heavy box. This is when I believe I herniated one disc. But the associated pain went away after one week.

In 2015, I went back to a rheumatologist who found the herniated disc but kept me in his care and still diagnosed me with ankylosing spondylitis. He had referred me to get a steroid shot in my back. The director of the pain clinic told me that my back looked like an old lady’s and that there was so much calcification he had difficulty finding an access point for the needle. I was 37 years old at the time! I stayed with the rheumatologist for 5 years until he moved on to a Veterans Hospital and couldn’t keep me as his patient. He treated my bouts of his bursitis and tendonitis. His replacement came in and threw out everything and told me I had disc degenerative disease with fibromyalgia. Went through her course of treatment (antidepressants, nerve medication, muscle relaxants) that did absolutely nothing for me. When she consistently seemed to overlook any tendonitis pain I would tell her about, I left her practice and went back through the rat race all over again, only to give up.

And now I’m back in the same boat. I tried a new rheumatologist last year and just had my 1-year follow-up with him a few months ago. He looked at me while this bright, young student podiatrist was shadowing him that day, and said in the tone of voice used for a kindergartner “Noooooww you’re getting it…. welcome to the world of myalgic pain! There is nothing really there. You are fine!” I cried as soon as I shut the door to my car.

At age 40, I joined a fit body boot camp and after one solid year of attendance, I was introduced to weightlifting. I have been weightlifting for three years, now. I learned from all my physical therapy that strong muscles are needed to support tendons and ligaments. My logic is to strengthen my muscles to support my back & hips and the areas where I get chronic tendonitis. At one point, at my fittest, my back pain was so much less – proof to me that exercise and strong muscles help. My trainer modifies when I have these tendonitis flares. Even he told me that in his 15 years of training bodybuilders and athletes he has never seen a client with as many tendon issues as me. It is normal to have an injury at some point in weightlifting, as with any sport, and to have that injury flare up; but not anything like what he observes me going through.

I have been going to an orthopedic & sports medicine doctor to treat my symptoms who put me on Celebrex 200 mg 2x a day because he said I had inflammation. My pelvic therapist (for bladder issues) and my podiatrist/ankle specialist (I broke my ankle in boot camp and now have sinus tarsi and inflammation in the joint) both tell me I am too young to have osteoarthritis (knees) and all this back degeneration and tendonitis.

This tendonitis, I get it whether or not I’m exercising. The back pain – it was always there, even before I herniated a disc. I eat clean, I am lean, I exercise regularly. The orthopedic thinks the weightlifting is making the back worse, yet exercise makes my body feel better. My back hurts no matter what I do. Remember – the back pain was there even before the disc herniation. I stopped exercising for 8 months after our move 2.5 years ago (west coast to east coast) and my back became so tight and stiff and I suffered from tendonitis in my body anyway.

I can’t seem to find a doctor anywhere that will listen and consider that I am not a textbook case and invest in helping me. I am so distraught at this point and this pain is bringing me down at present. I am older now and am getting tendonitis more frequently, which continues to get in the way of my fitness goals. I am not as tolerant of the pain as I was when I was younger. I keep bouncing back and forth between letting it all go and traveling to a renowned clinic in an adjoining state for answers. Some days I even question whether or not I am just weak when it comes to pain and maybe there really is nothing there.

So, I ask you the questions I began this post with. Thank you for your time and consideration.

  1. ,
    I realize this wasn’t easy to post and truly appreciate you sharing your story and your concerns. There are many in this community that have experience with degenerative disc disease as well as tendinitis and I’m hoping some will take the time to chime in here. I am grateful you found this community and hope it provides a bit of comfort to know you are not alone. ~Doreen (Team Member)

    1. I can absolutely relate to how difficult it is to describe your symptoms when there is so much going on. Thank you for sharing.

      I don't know if I can say much to help you, only that I also have disc degeneration and tendonitis- especially my elbows and wrists which often extends to my fingers and makes it difficult for my hands to function properly. I drop things all the time because my hand ceases up. I have really limited movement in my right hip and pain in the connective ligaments when I walk or try to do a squat while exercising. I also have a lot of pain in my knees.

      My rheumatologist prescribed me medication for nerve pain to alleviate my symptoms, but I feel like she doesn't really pay much attention to where the pain actually is. I know it's not my nerves, it feels more mechanical. And I don't like to take lyrica (pregabalin) which is what she has me on, I find that it clouds my thinking and I don't feel like myself when I'm on it.

      I had a herniated disc about a year ago- L5 S1, which was pressing on my cauda equina and I was very nearly paralysed. I never fully recovered from that surgery. I have constant sciatic pain, which I guess the lyrica does help with. I get tingling and numbness in my legs, feet, hands. The AS diagnosis came about after I insisted to my doctors that there was still something wrong and that I was getting worse, not better. After a ton of MRI's they found degeneration in my discs and sacroiliac joint. It is like yours, non-radiographic.

      I am also similar to you in the sense that I am, or was, an extremely active person. I used to climb mountains and run out the door every morning. I looked after my body and had faith in it. I still exercise, I love to cycle and swim, I do some weigh training too. This helps immensely and makes it easier to deal with my symptoms. But the pain is always there, even with all the pills the doctors throw at me. I wish I could tell you that I had found some remedy or method that helps with all this but so far, nothing.

      I can relate to your final sentence, that you question whether you are just not able to stand the pain. I often ask that question to myself- like is it really that bad, or am I just being dramatic/lazy/weak? It's especially hard because there are no physical signs that I am unwell or hurt. When I tell my friends I'm having a rough day they say, well you look great! I know they're trying to help but I feel like that diminishes my pain and causes me to question it further. So...I can say that yes, the pain is real and I'm with you.

      1. PattiB
        I can relate. I always had back problems and every time I went to the doctor I always ask why my ankle would slip out place. I started in athletics when I was 4 as I got older I developed a workout routine and later added weights. My joints felt worse but I thought if I could develop the muscles around the joints it would help. My shoulders would freeze, my hip pain was worse than my back pain. everything got worse. At the age of 54 an ortho. doc. told me I was developing a kyphosis. I was sent to a pain clinic and told I had fibromyalgia and osteoarthritis. I was still exercising everyday. 2 years ago I broke my arm and was told they had a hard time getting a good view because my thoracic kyphosis is so exaggerated. I told my doctor and he wouldn't do any x-rays. My first bone density test ever done on me showed severe osteoporosis (-3.7).

        I finally got a diagnosis 3 years ago and I was diagnosed by the gene. I was told I had a man's disease, gave me no explanation or pamphlet, just told me to come in Monday for an injection. I reminded him of a preexisting condition I had that I couldn't take biologics and he told me if I worry so much about side effects I shouldn't go to the doctor. I did not take the injection and when I met with him again and I told him why and he said Thank God it would have been very bad for you.

        I went back to the rheumatologist last week because I wanted to ask him questions about numbness, eye problems, the things you listed above and he said if you can't take my drugs you can't be my patient.

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