How do you have no spine

Back pain and nothing helps?

Sometimes it's rheumatism!

Even if it is only a small consolation: You are not alone in Germany with back pain. Dozens of people struggle with an aching back, but very few would think that they might suffer from an autoimmune disease. Did not do enough sport lately, sat at a desk for too long or just slept badly - it is completely human to look for simple explanations first before thinking further. One likes to postpone going to the doctor as long as one can make do with pain plasters or warming ointment. And sometimes the back pain suddenly disappears for a while. But what to do when the painful back becomes permanent and pain medication does not help?

It's not a question of age

This is what Tabea Hartmann * asked herself after many years of chronic back pain and countless unsuccessful attempts at therapy. “It would never have occurred to me that I suffer from a rheumatic disease. When the pain started, I was in my early twenties! ”Rheumatism, the 38-year-old office clerk thought, was a disease of old age. She discovered that this was not true when she first entered a rheumatologist's office. Patients of all ages were represented, even toddlers.

For Tabea Hartmann the disease began insidiously. "Shortly after my training, my lower back started to hurt," she remembers. "At that time I played a lot of volleyball in the club, so I initially thought of a sports injury." But the doctor's x-ray was normal. Typical of the early stage of axial spondyloarthritis, the best-known form of which is Bechterew's disease: it cannot (yet) be seen on the X-ray. Therefore it is also called non-radiologically axial spondyloarthritis (nr-axSpA).

Relapses of pain & morning stiffness

Tabea Hartmann was prescribed pain medication, but it didn't seem to work because the pain persisted despite the medication. Then suddenly after a few weeks the turning point: the back pain subsided and disappeared. Tabea Hartmann was surprised, but thought she was over the mountain. An indication of non-radiographic axial spondyloarthritis (nr-axSpA), the early form of ankylosing spondylitis: The Complaints come in flares so that those affected often think at first that it was a one-off incident.

Unfortunately the pain came back, more and more often, paired with immobility of the limbs in the morning - Morning stiffnessas Tabea Hartmann knows today. In addition to the back, the buttocks also ached. A cause could not be found. In addition to the diffuse recurring pain, which is mostly concentrated in the lower back and radiates to the buttocks, morning stiffness is a typical symptom of rheumatic back pain. Immobility is greatest right after getting up, but it improves with movement.

Doctor-to-doctor odyssey

Tabea Hartmann switched from doctor to doctor, always looking for the cause of her chronic back pain and her increasing restricted mobility. A wide variety of diagnoses have been made, from lumbar spine syndrome to shoulder-arm syndrome. "Because my pain kept disappearing at times and appeared in different places along my back, it was so difficult to recognize the disease," summarizes Tabea Hartmann. “Another problem was that it never occurred to me that other symptoms that came up could be related to my back pain. I had z. B. Sudden this persistent eye infection and pain in my wrist. At the respective specialist, I only told what I thought was important, but never about all of the complaints. Why should I also talk to my ophthalmologist about my back pain?

Eventually chance came to the rescue. Her best friend's new boyfriend worked as an assistant doctor in the rheumatology department of a large clinic. At dinner together, she burst into tears, the constant pain sore on her nerves. He asked her a few questions and finally said the all-changing sentence: "Tabea, I think you have ankylosing spondylitis .." The examination in the clinic the next day confirmed the suspicion.

Participation in a clinical study?

“To finally know what's wrong with me, to finally be able to name the pain, that was an infinite relief!” Describes Tabea Hartmann her feelings after the diagnosis was confirmed. Then the question of treatment arose. Usually, patients are treated with so-called basic therapeutic agents, usually a combination of cortisone and anti-inflammatory drugs, which, however, often only provide moderate pain relief. The doctor friend also mentioned the possibility of participating in a study for ankylosing spondylitis.

Tabea Hartmann finally decided on this solution. “The decision was not an easy one for me,” she confesses today. “At the beginning there was a lot of uncertainty and also fear, because the active ingredient with which I was to be treated had not yet been approved.” What if bad side effects occurred or permanent damage resulted from taking the medication? She had many conversations with the study doctor, with her husband, friends and her family doctor and finally decided to participate in the study as therapy. Despite the circumstances that caused her the more frequent examinations as part of the study, she has not regretted her decision.

She also attributes the fact that she is much better today to her intensive sports program and additional physiotherapy. "If I let go of my sport and do not move much, I notice it immediately, then the situation worsens, despite regular medication". Your personal credo for a better quality of life is therefore: Always keep moving!

Information on the study program from Novartis can be found here.

One disease many terms

Very different terms are used for various rheumatic diseases of the spine, some of which describe different stages of the same disease. We explain the most important:

Axial spondyloarthritis (axSpA): Collective term for rheumatic diseases of the spine. As with all rheumatic diseases, the inflammation is triggered by an overreaction of the immune system. In the case of axSpA, this overreaction causes inflammation of the spine. The result of this inflammation is back pain and a general feeling of stiffness in the body, especially in the morning (morning stiffness). Axial spondyloarthritis, like all rheumatic diseases, is one of the autoimmune diseases.

ankylosing spondylitis is the best known of the rheumatic diseases of the spine. The chronic inflammation of the spine has existed for so long that the inflammation has caused changes in the bones of the spine. These are visible in the X-ray image. Intervertebral discs and ligaments can ossify and stiffen and render the spine immobile. Often inflammation of the eyes and pain in the joints occur, and more rarely there is also inflammation of the intestine. If ankylosing spondylitis is not treated in time, the back becomes curved (hump).

non-radiological axSpA (nr-axSpA) is closely related to Bechterew's disease. It is also known as the initial stage of ankylosing spondylitis. The nr-asSpA is noticeable through permanent pain in the lower back. In addition to the spine and buttocks, pain in other joints can also occur. As in the advanced stage, Bechterew's disease, eye infections can also occur in the early form. Since the inflammation in the spine has not lasted long enough to cause changes in the bones, the nr-axSpA cannot be seen on the X-ray, which is why it is called "not radiographically". Due to the inconspicuous X-ray image, rheumatism is often not considered at this early stage and treated with common painkillers, which, however, cannot work in rheumatic pain. An MRI (magnetic resonance imaging) examination can detect the disease at an early stage.

Sacroiliitis: In sacroiliitis patients, the rheumatic inflammation primarily affects the lower spine with the sacrum and iliac joint (sacroiliac joint). The inflammation at this point is perceived as extremely painful and, if left untreated, can lead to permanent postural damage (crooked back, bent posture).

Spondylitis: One describes one as spondylitis bacterial inflammation The spine. The bacteria reach the spine via the bloodstream and trigger the inflammation there. The spondylitis is no rheumatic disease and is treated with antibiotics. It is mentioned here because the various terms are sometimes used imprecisely or in shortened form.

Ankylosing spondylitis: In contrast to spondylitis, ankylosing spondylitis (= ankylosing spondylitis) is a rheumatic disease and is often referred to as Synonym for ankylosing spondylitis used.

Spondylosis deformans: This term collects all changes in the spine that are visible in the X-ray image as irregularities in the bone, e.g. B. as a point or bony bead. The term says nothing about the cause of changes. In German, the term spondylosis is also used for this.

* Person & life story was created based on typical patient reports.


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