The inflammatory pain is outrageous. I had my first flare of it about a week ago and had difficulty walking. The pain woke me up at night. I was so stiff in the mornings I'd wake up and yell.
Here's how it all went. I had blood in my stool. I decided to wait to see if it happened again before I called my doctor. It didn't., but my stomach was upset and I knew I had gastritis or something like that. It subsided, no big deal. Then came the itchy watery hurting stinging in my eyes. By the time I did get to my GP I had uveitis in both eyes. Then came the hip, lower back near the tailbone and pelvic pain. I could literally feel the inflammation. Tender and warm. I also noticed before it came on I had some malaise, a low grade fever; all similar to a lupus flare but with the hip and lower back (and tailbone area) pain. I'd been having bouts of this for the last three months or so. Yelping in pain at emptying the dishwasher and thinking I sprained my tailbone and had bursitis in my hips. Getting inflammed and making my husband check it out..."look look it's all puffy and hot"...but this was my first real bad flare of it.
My grandmother had inflammatory arthritis. She was dx'd with anklyosing spondylosis and her bones were fused together in her lower spine. She was completely hunchbacked. I really feel for what she must have gone through now. No wonder she valued her percodan and valium. Holy cow, it's a hell of a disease. No wonder she needed her walker. I've been following in her footsteps with my lupus, why not with this too? Oy Vay!
So I notified my rheumatologist by fax that I will be needing the further testing of ct scan and mri stir and blood ran for the gene that helps determine if I'm prone to the disease for an official dx and treatment regimen. Till then my GP has me on muscle relaxers if needed and I'm already on pain meds and my pain mgmt doc has been contacted to start me on cortisone in the sacroilic joints.
I'm not happy but it is what it is. I will manage. There are alot of lupies with AS, I'd love to meet you...write me at jujubeee714@msn.com if you see this post. It's autoimmune (what a surprise)..ai'conditions like to hang in packs as you know.
Here's some info on ankylosing spondylitis and sacroilitis. I hope you NEVER have to find out for yourself what it is and I certainly pray and feel for the children diagnosed with this.
Sacroilitis: (from mayoclinic.com)
Sacroiliitis (sa-kro-il-ee-EYE-tis) is an inflammation of one or both of your sacroiliac joints, which connect your lower spine and pelvis. Sacroiliitis can cause pain in your buttocks or lower back, and may even extend down one or both legs. The pain associated with sacroiliitis is often aggravated by prolonged standing or by stair climbing.
Sacroiliitis has been linked to a group of diseases called spondyloarthropathies, which cause inflammatory arthritis of the spine. Sacroiliitis can be difficult to diagnose, because it may be mistaken for other causes of low back pain. Treatment of sacroiliitis may involve a combination of rest, physical therapy and medications.
The pain associated with sacroilitis most commonly occurs in the buttocks and lower back. It can also affect the legs, groin and even the feet. Sacroiliitis pain can be aggravated by:
- Prolonged standing
- Bearing weight more on one leg than the other
- Stair climbing
- Running
- Large strides
- Extreme postures
- Traumatic injury. A sudden impact, such as a motor vehicle accident or a fall, can damage your sacroiliac joints.
- Arthritis. Wear-and-tear arthritis (osteoarthritis) can occur in sacroiliac joints, as can ankylosing spondylitis — a type of inflammatory arthritis that affects the spine.
- Pregnancy. The sacroiliac joints must loosen and stretch to accommodate childbirth. The added weight and altered gait during pregnancy can cause additional stress on these joints and can lead to abnormal wear.
- Infection. In rare cases, the sacroiliac joint can become infected
Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.
