You might wonder why the fuck you’d go to a site called “The G Bitch Spot,” or Bitch anything, to learn about ankylosing spondylitis/AS. So, why? Because I have it. Because I’ve read a good number of pages, blogs, pamphlets, online quizzes, etc. and found most lacking, some appallingly so. Because I like to know and I’ve looked and I feel pretty good about what I found and the weight I give it and the quality information that I can use in conversations with my doctors. Because it’s hard to find good, solid, current information that you really can use and need. But mostly because I can research, read, summarize, and articulate and grandiosely think I got some shit to say about AS and its many tributaries, most involving pain, pain, pain, pain.
And because bad information is the worst thing that can happen to you if you have a chronic illness/condition. Multiply that if it’s invisible.
What is AS?
It is a chronic systemic inflammatory disease that primarily attacks the axial skeleton and adjacent structures. The axial skeleton…consists of 80 bones in the head and trunk of the body, and is divided into five parts: skull, ossicles of the inner ear, hyoid bone of the throat, rib cage, and the vertebral column.
Typically, the vertebrae of the spine become inflamed, causing chronic pain and discomfort. In more severe cases, this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position resulting in a forward-stooped posture. If left untreated, the inflammation of the spinal joints will gradually destroy the cartilage and fibrous tissue of the surrounding structures as well as the ligaments and literally [sic] replace them with bone….
The effects of AS are not confined to the spine. Patients with AS may experience pain and inflammation in other joints, such as hips, shoulders, knees, elbows, and feet. Ankylosing spondylitis may also affect the lungs, eyes, bowel and, in rare cases, the heart [Weisman 5-6].
No, it does not “primarily” affect men 18-35. [About.com: Ankylosing spondylitis: Prevalence of Ankylosing Spondylitis].
The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.
…It is important to know that ankylosing spondylitis is a chronic, or life long disease and that the severity of AS has nothing to do with age or gender. It can be just as severe in women and children as it is in men. [Spondylitis Association of America, Ankylosing Spondylitis]
Women have been traditionally under-diagnosed and, as a result, under-treated. [Actually, AS is generally under-diagnosed and under-treated.] A primary difference found between men’s and women’s symptoms is that women report more “widespread pain,” possibly due to enthesitis, and are often [mis-]diagnosed with fibromyalgia:
Women, however, reported significantly more frequent heel pain, as a manifestation of enthesopathy. The most striking difference between genders, however, was the unexpectedly high prevalence of WP [widespread pain] in women with axial SpA…. the presence of WP correlated with a doubled delay time to diagnosis and, as expected, was accompanied by significantly more frequent neck and chest pain. It should be stressed, however, that the prevalence of other features of axial SpA, such as peripheral joint involvement, uveitis, diarrhea, or enthesopathy was not statistically different between groups of women with and without WP…. Of interest, elevated ESR and/or CRP levels were seen significantly more often in women with axial SpA and WP, and these may have motivated the further investigations which led finally to the diagnosis of SpA. On the other hand, the presence of WP in women with axial SpA may be related to a higher level of systemic inflammation, reflected also in elevated ESR/CRP. To the best of our knowledge, the only published study to look at fibromyalgia in patients with AS, found that 9 of 18 women and 0 of 18 men with AS satisfied the classification criteria for fibromyalgia. While small, that study showed also good correlations between the presence of fibromyalgia and self-reported indices of AS, including bath ankylosing spondylitis disease activity index (BASDAI). This finding, along with the results of the present study, may insinuate that WP (or fibromyalgia), seen frequently in female patients with other inflammatory rheumatic diseases, may also be a frequent phenomenon in women with axial SpA. Its presence may not only confuse physicians and exacerbate diagnostic delays, but may also contribute to women’s worse self-reported functional limitations, as compared to men, at any given level of radiographic damage.
The present study did not reveal specific disease-related features responsible for the delay in diagnosis of axial SpA, except for WP in women. The three groups of patients divided by time from the first disease-related symptom to diagnosis were similar by both clinical presentations of axial SpA and ESR/CRP profile.
Women with axial SpA and WP had almost twice as long a delay time to SpA diagnosis in comparison to women without WP. However, no other disease-related features were found responsible for delay in the diagnosis, suggesting that the physician’s high level of suspicion may be the dominant factor leading to the early diagnosis of axial SpA [Slobodin et al 1079-1080].
[Axial SpA/spondyloarthritis is a more general term used when sacroiliitis may not yet show up in imaging or used for an early stage of AS that usually progresses to a more clearly defined AS.]
All that said, AS can be very idiosyncratic and individual. You may be HLA-B27 positive or not, have psoriasis or not, IBD or not, fusing or not, and it may start in high school, college, your 30s and be diagnosed in high school, college, 20s, 30s, 40s, even 50s. Pain may start in the low back and SI joints or in the cervical spine, as seems to be true for more women than men. Fatigue may be mild or debilitating and change according to flares or weather or exertion or nothing at all. Low-grade fevers are common and can last for days, weeks, months. [I’ve had one for most of the past year.] Anti-TNF drugs and NSAIDs may work well or not at all or for 3, 6, 8 years then not at all, or again after a break. Each day can be a surprise. “Miserable” is a common descriptor. For most people, it’s also “invisible,” unless you’ve experienced fusion and curving in the spine, and severity can’t be based on appearance, unless you’re using a cane, walker or wheelchair. And each of those is a whole different and additional social misery.
The treatment of chronic pain is another fucking mess, even though what most AS people mention first is the fucking pain.
Approximately three-quarters of AS patients experience some type of chronic inflammatory back pain. Scientists hypothesize that the cells involved in the inflammatory process release chemicals that stimulate the nerves surrounding the back bones, creating the sensation of pain. Initially, the pain is dull and intermittent. Over time, the pain becomes more persistent and will localize sometimes to the buttocks area or even in the small spinous processes that stick out of the back. It may also occur in the pelvis at the point where you sit down on a hard surface. One of the characteristics of this pain is that it tends to feel worse during periods of inactivity…with exercise or physical activity resulting in some pain relief [Weisman 27-28.]
Enthesitis…is the main cause of the pain, stiffness, and limited range of motion in the spine experienced by AS patients. Enthesitis often presents as swelling over the inflamed area, with patients reporting that the affected area is tender to the touch upon sitting or when touching selected objects. Sitting on hard surfaces can be extraordinarily difficult for a person with AS if the area covering pelvic bones is inflamed [Weisman 29].
Patients with AS may also experience peripheral joint synovitis, an inflammation of the synovial joints that occurs in about 50% of AS patients, targeting the hips, knees, ankles, fingers, and toes….It appears to affect not only the synovial lining of the joints [as in rheumatoid arthritis] but it also affects the joint capsule, the enthesitis attachments, and even the lining of he bones….it can affect an entire finger [not just the joints] or toe, and sometimes the locations can be just one, two, or three joints around the body in what seems like a random pattern [Weisman 30].
Neither NSAIDs nor anti-TNF drugs have been shown to prevent or stop fusing:
based on the currently available evidence, we cannot stop or retard new bone formation, even with the recent addition of anti-TNF therapy for the treatment of AS. Studies have shown that over a 2-year period, anti-TNF therapy did not stop the radiographic progression of AS [Weisman 101].
I’ll repeat: Neither NSAIDs nor anti-TNF drugs have been shown to prevent or stop fusing. Fusing happens, period. But
There are no known factors that influence the severity of spinal inflammation or the rate of progression of spinal ankylosis, although we do know that functional disability occurs more quickly in older patients and smokers, and less quickly in patients who do back exercises on a regular basis and have better social support structures [Weisman 97-98].
Getting diagnosed can be hard if you don’t have clear markers like HLA-B27 or MRI evidence of sacroiliitis. But since 2011, the experts have pushed for earlier diagnosis, not waiting until fusion occurs or the symptoms so obvious your kid could diagnose you through WebMD. It doesn’t have to take 8-11 years to be diagnosed and finally treated for at least some of your symptoms. But it often does. So hang on. And keep making noise to get what you need.
After diagnosis? The best recommendations:
Table 1 List of recommendations for the behaviour of patients with AS and for adaptation of their living and working environment (partially shortened) based on the systematic literature research
Maintain a proper posture at work, at leisure and when sleeping
Avoid overtiring yourself and avoid becoming overweight
Maintain a good attitude and try to be cheerful
2. Sitting position
Your chair should have a plain and firm surface. Avoid sitting for prolonged periods, especially in low soft sofas or on surfaces that slope backwards
An inclined table or a drafting table with tilting work surface facilitates reading in an upright position …
Use large enough steps to prevent limitation of your hip joint extension
Use shoes with elastic heels instead of walking with bent knees to absorb shocks from walking on hard surfaces
Use a firm flat bed to maintain a good sleeping position at night …
Make a habit of preferably sleeping on your back to prevent your hip joints and your back from becoming bent
Try to lie on your front some time before sleeping and before rising in the morning
Avoid using a pillow if possible, or use one just thick enough to allow a horizontal position of your face …
Avoid a bolster or pillow which reaches under the shoulders and thus forces your thoracic spine into a bent position
Avoid a pillow under your knees because this will increase the tendency of muscles and tendons to shorten
5. At work
A dry and draught-free working place is desirable for patients with AS
Examine your posture at work and modify your working environment if necessary to maintain a good posture
Avoid prolonged stooping or bending and physical activity that places prolonged strain on your back and neck
Organise your work in a way that you can alternate between sitting, standing and walking
Occupations associated with extended bending, twisting, stretching or body vibrations are unfavourable for patients with AS
During your lunch break at work, lie flat for a few minutes. Try to lie face down on your stomach for part of the time
Daily exercises are an important part of treatment for ankylosing spondylitis
Perform appropriate muscle-strengthening and mobility exercises regularly, as advised by your doctor
Do deep breathing exercises at frequent intervals during the day, with especial regard to thoracic breathing
Exercises with machines that enhance back, leg and shoulder extension are helpful, but avoid undue stress on the neck
If you are in a flare and your joints are painful and stiff, carry out range-of-movement exercises within your pain-free limits
7. Sports and recreational activities
Physical activity is important for patients with AS
Which sports are suited depends on the state of your disease and on whether or not you are already well trained in this sport …
Physical activities that encourage good posture as well as extending and rotating the trunk are recommended …
Sporting activities that require prolonged spinal flexion (as in golfing, bowling, long-distance cycling) may be inadvisable
Sports with greater potential for injury (as boxing, football, etc.) and downhill skiing are also not recommended
Proper breathing techniques are also accomplished by singing or playing a musical wind instrument that requires a large lung capacity. The traverse flute and violin are not suited to patients with AS because of the unfavourable neck position …
A dietary regimen with only two meals with red meat and two fish meals per week is recommended for patients with AS …
Individual nutrient sensitivities or intolerances may also play a role and have to be considered individually …
Sufficient Vitamin D and calcium intake are important to prevent osteoporosis
9. Sexuality and pregnancy
With a considerate partner, AS should not severely interfere with lovemaking in most cases. If, however, you are having a flare or problems with your hips, you may need to experiment to find comfortable and satisfying positions …
The probability that children of patients with AS will develop the disease is estimated at 5–15 %
This is, however, not a reason that patients with AS should not have children
Fertility, pregnancy and childbirth are usually not a problem in AS
Even women with sacroiliac joint fusion or hip joint replacement usually do not require a caesarean section
Wherever possible, drugs should be avoided during pregnancy
If you are taking methotrexate, strict conception control has to be undertaken. For TNF-blocking drugs, it is sufficient to discontinue the treatment as soon as a pregnancy is assessed, according to the present state of experience
To compensate for not taking medication, try to increase your exercise programme …
10. Car driving
If you have impaired mobility of the neck, special wide-view mirrors fitted to the car can be very helpful …
Use seat belts and head restraints. Remember that the stiff neck of an AS patient is more vulnerable to injury …
If the seat is uncomfortable in a rented car, a small cushion behind your back may be helpful
Stop after an hour or two and get out of the car to stretch your back and walk around for a few minutes
Carry an emergency information card that you can show to first-responders to make them aware of your diagnosis and the special needs to be taken in connection with positioning, transportation and intubation for artificial respiration
11. Fall prevention
Always wear a good pair of skid-resistant shoes
In winter, if there is ice, shoes with fold-out spikes are helpful
Use grab rails/well-shaped banisters when going down stairs
A shower stall is safer than a bath tub. If a bath tub must be used, use a bath board/mat to avoid slipping, and use suitably placed grab bars
Avoid slippery surfaces and loose carpets
Use floor lighting at night
12. Advantages of membership in a disease-specific patient organisation
Reliable information on the disease and on living with it
Exchange of experiences among patients with different disease durations
Supervised evening therapy groups organised throughout the country
Common social activities and suitable sports
Overcoming social isolation of patients
Advice in social and medical problems associated with the condition
Common representation of the interests of the patients in society, the law, and the health service [Feldtkeller et al, 2344-2345]
Table 2 Final core set of recommendations concerning AS patient behaviour and adaptation of their living and work environment—to be delivered to AS patients early in the disease course, for instance in connection with the diagnosis
General statement: Ankylosing spondylitis is an inflammatory rheumatic disease which may lead to stiffening of the spine. The course of the disease is highly variable and effective treatment options are available. AS is not a malignant disease. Most patients with this disease can have an almost normal life and can successfully practice in their profession
The following recommendations will help you to reduce fears you may have regarding the disease, and help you to contribute to a favourable disease course by appropriate behaviour and adaptation of your living and work environment
1. Basic principle: Maintain a proper posture at work, at leisure and when sleeping
2. Sitting position: Take care to keep a hollow back while sitting. To achieve this, a firm and plain sitting surface is better suited than a low soft sofa or a backwards sloping surface
3. Walking: Use sufficiently long steps (like in Nordic walking) to maintain hip joint extension. Well-fitted shoes with shock absorbing heels and flexible soles facilitate pain-free walking
4. Sleeping: Try to sleep preferably on your back for an optimal extension of your back and hip joints.
Sleeping with your upper body elevated on a large and thick pillow, which forces your thoracic spine into a flexed position, is not recommended. Use a sufficiently high-quality mattress and firm frame
5. At work: Try to change positions between sitting, standing and walking at work, and take care to maintain a proper posture for your back.
When choosing your profession, take into consideration that occupations connected with strong bending, twisting, stretching and body vibrations are not recommended for patients with ankylosing spondylitis
6. Exercises: Daily disease-specific exercises are an essential part of the therapy of ankylosing spondylitis.
Perform deep breathing exercises with pronounced thoracic breathing several times per day
7. Sports and recreational activities: It is important for patients with ankylosing spondylitis to remain physically active. Sports activities are the best way to attain physical conditioning, to stabilize blood pressure and heart rate, and to improve lung function capacity. Sports activities, however, are no substitute for disease-specific exercises. Which kind of sports is especially suited for you depends on the state of your disease and on whether you are already experienced in this type of sport or a beginner. Sports connected
with a straight posture and stretching of the trunk (Nordic walking, hiking, swimming, cross-country skiing, tennis, badminton, archery, volleyball) are especially recommended
8. Diet and life style: A diet with less meat (less arachidonic acid), more fish (omega-3 fatty acid) and vegetarian meals may contribute to reducing inflammatory processes
Do not smoke because smoking has a proven negative influence on the course of the disease
Ankylosing spondylitis is often associated with osteoporosis. Therefore, a balanced calcium intake via food and sufficient vitamin D supplementation (sun exposure, fish diet, also vitamin D tablets, if necessary) are essential
9. Sexuality and pregnancy: Severe restrictions or limitations in love life should not occur in most cases with sensible and considerate interaction of the partners. Experimentation may be required in order to find pain-free and satisfying positions. Talk to your partner about the situation in order to avoid misunderstandings. Openness and impartiality contribute to a fulfilling sexual life
Fertility, pregnancy and giving childbirth normally do not constitute a problem in ankylosing spondylitis.
Even with fused sacroiliac joints or artificial hip joints a caesarean section is usually not required
Discuss the use of medicines during pregnancy and breastfeeding with your doctor
10. Advantages of membership in an AS-specific patient organisation: Reliable information on the disease and on living with it, including patient education courses; exchange of experiences among patients with different disease durations; professionally supervised local AS-specific group physiotherapy; common sports and social activities; overcoming impending social isolation; advice in medical questions and social law; representation of patient interests in insurance and legislation [Feldtkeller et al, 2346]
And now, Let’s Get Real: this shit, AS, sucks. Every day. Pain. Fatigue. More pain. Spine, cervical, thoracic, lumbar. Ribs. Shoulders. Elbows. Knees. Hips. Legs. Feet and toes. Heels. Ankles. There will be brief clearings of some of the worst of the gloom but that will depend on the day, hour, barometric pressure, what you ate last week, the last thought that went through your head, or nothing at all. As stressful as AS is, stress makes flares worse, or triggers them. You can’t not move, you have to move, and you’re fatigued, sometimes to the point of, and I’ve been here, resting between putting on articles of clothing, or hoping you can make it through a 3-minute shower, feeling pinned down by the arms, head and chest. You’ll lose friends. Possibly a job or profession or what you trained for a decade or so to do. Houses. Some lose their spouses/partners. Some partners/spouses are so difficult—it’s in your head, you just need to __, I do not believe this AS junk, etc.—you wish they’d leave you. You will feel like several kinds of shit and not just physically, which is bad enough:
Feelings of guilt and embarrassment. Because we’re repeatedly told that we look and sound fine, many of us begin to think it’s our fault that we’re sick or in pain. We must be doing something wrong. The culture around us reinforces this notion. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy….
For many years, I felt guilty and embarrassed that I wasn’t living up to the cultural norm: guilty in the sense that I thought I was doing something wrong by failing in my obligation to others and to myself to get better; embarrassed in the sense that I was judging myself negatively for not living up to what I perceived to be others’ expectations of me.
People will think, and say, all kinds of stupid shit about and to you:
When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.
Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.
Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.
Misconception #6: Being home all day is a dream lifestyle.
This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.
You will be depressed. Don’t lie to yourself—this kind of shit just is depressing, it’s not you, it’s just what it is, the way it is, how it flows. Learn some tricks of the trade and stay aware; those of us with chronic pain/illness are much more likely to commit suicide, and don’t be afraid on those days when death seems like the compassionate option to talk to somebody [National Suicide Prevention Lifeline at 1-800-273-8255, BFF, parent, therapist, the Samaritans at 1-800-273-TALK, etc.].
Mostly, it is isolating to be in chronic pain, and/or always be tired, and/or have trouble talking because you are so worn out just getting from bed to shower to dressed to breakfast to the sofa. People will say they understand but show with their behavior that they absolutely do not understand. Some people will surprise you and change, step up to the plate, smile. Most fucking won’t so don’t expect them to. Find people who do. You can find online support groups online and in Facebook. Search “ankylosing spondylitis.” Almost anyone with a chronic illness/condition will understand aspects of the chronic experience. A little understanding goes a very long way when you are this kind of alone.
If you’re lucky, you’ll be in either a medical marijuana state or a state, not mine, where you can get treatment for chronic pain.
You’ll feel betrayed by your first and best companion, your body. But you’ll be okay. Just different.
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