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.