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ANKYLOSING SPONDYLITIS!
M.C.B.B. Summer 2013 Student Psychological Aspects of Trea@ng
Disease Summer 2013
WHAT IS ANKYLOSING SPONDYLITIS? Ankylosing spondyli@s, or AS, is a form of arthri@s that primarily affects the spine. It causes inflamma@on of the vertebrae (the mul@ple separate bones that make up the spine) that can lead to severe, chronic pain.
AS can also cause pain, s@ffness, and
inflamma@on in other parts of the body, such as the shoulders, hips, ribs, heels, and small
joints of the hands and feet.
WHAT IS ANKYLOSING SPONDYLITIS?
One of the key features that differen@ates AS from other types of arthri@s is the involvement of the
sacroiliac joints, or the joints that are found at the base of the spine, where the
spine joins the pelvis, during the progression of the disease.
ANKYLOSING SPONDYLITIS In the most severe of AS cases (but not in all cases) the inflamma@on that AS causes on the spine vertebrae can
lead to new bone forma@on on the spine, causing the spine to fuse in a fixed, immobile posi@on, some@mes crea@ng a forward-‐stooped posture. This forward curvature of the
spine is called kyphosis.
Kyphosis occurs due to the fact that, when inflamma@on occurs, the joints can begin to wear down and become damaged. As a result, the body responds by deposi@ng calcium to the damaged area. The calcium deposits then spread to the ligaments and disks between the vertebrae,
leading to fusion of the spine.
SYMPTOMS Spinal pain, which is generally focused on the lower back, is usually the first
and most common symptom of AS. Back pain that occurs with ankylosing spondyli@s generally has some of the following characteris@cs:
ü Begins in early adulthood (before 45 years of age) ü Has gradual onset (rather than sudden onset a\er an acute injury) ü Lasts longer than three months ü Is worse a\er rest (for example, in the morning) ü Improves with ac@vity ü Wakes you up in the second half of the night ü Can cause morning s@ffness las@ng more than 30 minutes ü Can cause bu]ock pain that alternates between the le\ and right side ü Limited spinal mobility — The flexibility of the back may be reduced.
Pu_ng on shoes and stockings may become difficult due to a limited ability to bend forward.
OTHER SYMPTOMS ü Hip pain — Arthri@s of the hips is rela@vely common in
ankylosing spondyli@s. This leads to pain in the groin or bu]ocks or may result in difficulty walking.
ü Shoulder pain — Inflamma@on of the tendon and bone may cause shoulder pain and limited mobility of the affected shoulder(s).
ü Arthri@s in other joints — Pain, s@ffness, and swelling of other joints may occur. A single joint or a few may be affected.
ü Enthesi@s — An enthesis is a region in which a tendon or a ligament a]aches to bone. Enthesi@s, therefore, is inflamma@on of an enthesis. It is generally focused to the spine, but it can also addi@onally be focused on the heel as well.
ANKYLOSING SPONDYLITIS AND FATIGUE
As with any chronic inflammatory disease, people with ankylosing spondyli@s may be
@red and may feel unwell.
Not everyone with ankylosing spondyli@s experiences fa@gue, but it’s very common. Fa@gue is related to many things, including the condi@on itself, difficulty sleeping, and
even psychological factors.
ANKYLOSING SPONDYLITIS AND FATIGUE
There are a number of factors that affect the level of fa7gue that one experiences with AS, including, but not limited to…
ü Cytokines -‐ These are small proteins released by your cells that trigger
inflamma7on. In addi7on to swelling, they may also produce fa7gue because your body must use up a lot of energy to deal with inflamma7on.
ü Sleep -‐ As 7red as you may be, sleep can be especially hard for AS sufferers due to the fact that the pain can make it hard for one to go to sleep, as well as having it wake you up at night (generally during the second half of the night). Also, spondyli7s pain and s7ffness actually get worse with rest. The longer you're not moving, the more pain and s7ffness you get; this is why morning s7ffness occurs in those with AS.
ü Anemia -‐ The release of cytokines can also lead to a decrease in the amount of red blood cells you make, a condi7on called anemia. Anemia can also add to fa7gue.
ü Depression -‐ Having a painful, cyclic, and unpredictable chronic condi7on like AS can lead to stress and depression. One symptom of depression that occurs independently of AS is insomnia, which only further adds to one’s fa7gue.
WHAT CAUSES A.S.? Although the exact cause of AS is unknown, there is evidence that the cause of it might be gene@c in
nature. Most individuals who have AS have a gene that produces a "gene@c marker" -‐ in this case, a protein -‐ called HLA-‐B27. This marker is found in over 95% of AS
pa@ents.
Having this gene, however, does not mean that you will have AS. As a ma]er of fact, less than 1 out of 20
people with the gene will develop AS.
RISK FACTORS ü AS is two to three @mes more common in
males than in females ü It is usually diagnosed in young adults
between the ages of 20 and 30 ü A person’s risk increases if a first-‐degree rela@ve, such as a parent, sibling, or child, has
AS. ü Tes@ng posi@ve for the HLA-‐B27 gene is also
considered a risk factor for AS.
DIAGNOSING ANKYLOSING SPONDYLITIS
Although there are no defini@ve blood tests that confirm an AS diagnosis, a diagnosis can be made based upon a combina@on of a pa@ent’s reported symptoms, physical
examina@on, and results of imaging tests.
DIAGNOSING ANKYLOSING SPONDYLITIS
Reported Symptoms-‐ A medical physician will ask about one’s history of reported back pain, including the dura@on, intensity, as well as when does one experience the pain (such as if it’s worse in the morning or a\er a long period of rest). He or she will also ask about overall pain intensity and fa@gue, sleep quality, energy level, and problems with mobility.
DIAGNOSING ANKYLOSING SPONDYLITIS
Physical examina@on – A medical professional will test the individual for mobility and flexibility in the neck, back, hips, and ribcage. The doctor will also examine the peripheral joints, such as those in your hands and fingers. Lastly, the doctor will check for inflamma@on and tenderness in the joints that are most likely to be affected.
DIAGNOSING ANKYLOSING SPONDYLITIS
Imaging tests-‐ AS pa@ents develop characteris@c changes in the sacroiliac joints. These changes can be seen on x-‐ray images, although these changes may not be apparent un@l years a\er the onset of ankylosing spondyli@s through the use of x-‐rays. Therefore, imaging tests such as MRIs (magne@c resonance imaging) may be used if AS is suspected but is not clearly seen on an x-‐ray.
Magne@c resonance imaging (MRI) is a test that uses a magne@c
field and pulses of radio wave energy to align the hydrogen atoms found inside the body to create detailed pictures of the organs and
structures in which one is interested in looking at. An MRI can produce pictures with more much more detail in comparison to an
x-‐ray, ultrasound, or computer tomography scan.
ANKYLOSING SPONDYLITIS TREATMENT
Although AS is a chronic disease without a defini@ve cure, an individual will generally receive a treatment plan that is tailored for that specific individual’s needs that is based on the characteris@cs and severity of their
specific presenta@on. Such a plan may include an exercise regimen, medica@on, possible
surgery, and psychologically-‐based interven@ons.
ANKYLOSING SPONDYLITIS TREATMENT: EXERCISE
Exercise -‐ Exercise should be part of the treatment program for everyone with ankylosing spondyli@s. Exercise plans can range from home exercises, to individual or group exercise with a physical therapist, or even physical therapy (PT) treatments ,and should consist of posture training, deep breathing, back extension, and other stretching movements.
ANKYLOSING SPONDYLITIS TREATMENT: EXERCISE
Op@mally, it would be best for each pa@ent to be evaluated and given instruc@ons by a physical therapist. However, there are a number of resources that an AS pa@ent can access online
that will provide them with @ps and exercises that one can do to help alleviate AS symptoms, such as by accessing:
Ø The
Pa@ent Informa@on: Arthri@s and exercise (Beyond the Basics) page in Uptodate.com (which offers free access to pa@ents)
Ø The Everyday guide to exercise and physical ac@vity, a free 120+ page guide available on the Na@onal Ins@tute of Aging website.
Ø The Arthri@s Helpbook , which offers specific exercise examples as well as informa@on on all available treatments, medica@ons, surgeries and proven techniques to reduce pain and increase dexterity.
ANKYLOSING SPONDYLITIS TREATMENT: MEDICATION
Medica@on – Depending on the severity of the symptoms reported and the response that a pa@ent has to the medica@on, there are a number of medica@on op@ons that can be prescribed by a physician. These include:
Nonsteroidal an@inflammatory drugs (NSAID) — An NSAID is commonly used to
control pain and s@ffness. NSAIDs, such as Ibuprofen (Advil, Motrin), Naproxen (Aleve), Diclofenac, and Celebrex, are designed to inhibit ac@vity of COX-‐1 and COX-‐2 enzymes. These enzymes are produced by the cells of the body, and are responsible for the crea@on of the agents called prostaglandines, which promote inflamma@on, pain and fever. This type of medica@on needs to be taken on a regular basis for several weeks before their maximum effect can be judged.
Sulfasalazine — Sulfasalazine is a disease modifying an@rheuma@c drug, or
DMARD, that may be given to slow or stop the progression of ankylosing spondyli@s. It may be given along with NSAIDs. This drug provides some relief of arthri@s symptoms but is not helpful if ankylosing spondyli@s only affects the spine.
ANKYLOSING SPONDYLITIS TREATMENT: MEDICATION
An@-‐tumor necrosis factor therapy — A group of medicines known as an@-‐tumor necrosis factor agents (an@-‐TNF) or TNF inhibitors is o\en effec@ve in the treatment of ankylosing spondyli@s. These types of medica@on work by targe@ng TNF, a chemical produced by the immune system that causes inflamma@on in the body. In healthy individuals, excess TNF in the blood is blocked naturally, but in those who have condi@ons like AS, higher levels of TNF in the blood lead to more inflamma@on, joint destruc@on and persistent symptoms. Examples of an@-‐TNF medica@ons include infliximab, etanercept, adalimumab, certolizumab pegol, and golimumab. Improvement in AS symptoms is common and may occur within a few weeks of star@ng the drugs. People who do not respond to one an@-‐TNF treatment may respond to another. **Not every pa@ent with ankylosing spondyli@s needs an@-‐TNF therapy. In general, people with ac@ve disease in the spine, such as those with more severe cases of AS, who have not responded fully to NSAIDs may be candidates.**
Some clinicians may also recommend a glucocor@coid injec@on, also known as a
cor@costeroids injec@on, into par@cularly painful or swollen joints, especially if there is only one or a two that are causing the most pain. A glucocor@coid injec@on contains a synthe@c product which mimic cor@sol, the body's naturally occurring glucocor@coid. In some cases, a glucocor@coid injec@on into the sacroiliac joint may help provide relief in pa@ents who have sacroiliac pain that have not responded to other therapies.
ANKYLOSING SPONDYLITIS TREATMENT: SURGERY
Surgery — Hip or spine surgery may be beneficial in selected pa@ents with more severe types of ankylosing spondyli@s. Surgical procedures may include one or more of the following:
Ø Total hip replacement — Inser@on of an ar@ficial hip may be recommended in pa@ents with ankylosing spondyli@s who have severe, persistent hip pain or severely limited mobility due to hip joint arthri@s.
Ø Spinal surgery — Fusion of the bones in the cervical spine may be recommended for a small number of pa@ents who develop disloca@on of these bones. Such surgery may help prevent spinal cord damage.
Ø Wedge osteotomy — Wedge osteotomy involves the removal of a wedge-‐shaped piece of bone from a vertebra, followed by realignment of the spine. The spine is then braced and is allowed to heal in a be]er posi@on. This type of procedure may be recommended for people who develop severe deformi@es of the neck.
MEDIA CLIP: ANKYLOSING SPONDYLITIS INFORMATION, RISKS AND DIAGNOSIS, AND TREATMENTS!
If you wish to recap and delve a li5le bit further what AS is all about, here is are three short HealthiNa<on video where Dr. Pree< Parikh further explains:
Ø What is Ankylosing Spondyli@s? h]p://www.youtube.com/watch?v=zMcedCuozTY
Ø Risk Factors and Diagnos@c Procedures Surrounding AS h]p://www.youtube.com/watch?v=KNIvZwAJwJc
Ø Trea@ng Ankylosing Spondyli@s h]p://www.youtube.com/watch?v=FGJ4nvjnii4
ANKYLOSING SPONDYLITIS TREATMENT: CBT
Cogni@ve Behavioral Therapy-‐ Also known as CBT, this type of therapy include treatment components involving educa@on, skills acquisi@on, cogni@ve and behavioral rehearsal, generaliza@on and maintenance and relapse preven@on (i.e., being taught strategies designed to help pa@ents retain their coping skills and avoid increases in pain or other symptoms a\er treatment)
Pa@ents with rheumatologic disease (such as AS) have made experiences of helplessness because they believe that they have no control over their pain. Therefore, it is the main goal of cogni@ve-‐behavioral-‐ based interven@ons to reduce these feelings of helplessness and not being able to control pain and to
increase the pa@ent’s sense of self-‐efficacy. The emphasis is on helping pa@ents to reconceptualize their situa@on and their own role in improving their physical func@oning as well as in posi@ve adapta@on to limita@ons
imposed by their physical impairments. O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale
Italiano di Medicina del Lavoro ed Ergonomia, 29(1), A19-‐A23.
ANKYLOSING SPONDYLITIS TREATMENT: CBT
If looking at Cogni@ve-‐Behavioral Treatment for the purpose of arthri7c pain management, there are four specific components and steps involved:
Ø cogni@ve restructuring
Ø cogni@ve and behavioral pain coping strategies Ø skills consolida@on
Ø generaliza@on and maintenance.
All of these components of CBT with rheumatologic pa@ents are considered necessary to teach pa@ents to reduce or be]er manage their chronic illness, the pain experiences and
distress and maintain improvement in func@onal ability.
ANKYLOSING SPONDYLITIS TREATMENT: CBT
1. Cogni@ve reconstructuring -‐ This component helps pa@ents understand that cogni@ons and behavior can affect the pain experience and emphasizes the role that pa@ents can play in controlling their own pain. This can be done by first using a diary in which the pa@ent records the frequency and severity of every pain episode, including the situa@on at the @me of the pain and thoughts, feelings, and behaviors that precede, accompany and follow a pain episode. Once specific associa@ons of thoughts, emo@ons and pain are iden@fied as maladap@ve, the pa@ent learn to use alterna@ve thoughts and strategies that might be used for adap@ve response to problems associated with pain.
“Cogni@ve restructuring focuses on iden@fica@on of habitual, automa@c but ineffec@ve behavioral responses, shi\ing the pa@ent toward systema@c problem solving and planning, control of affect, behavioral persistence or disengagement when appropriate. Moreover, the cogni@ve interven@on
helps examine how such habitual thoughts intensify and maintain stress and physical symptoms.”
O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale Italiano di
Medicina del Lavoro ed Ergonomia, 29(1), A19-‐A23.
ANKYLOSING SPONDYLITIS TREATMENT: CBT
2. Cogni@ve and behavioral pain coping strategies -‐ Training is provided in wide variety of cogni@ve and behavioral pain coping strategies and are used to help pa@ents control and manage pain, elements that trigger pain and distress associated with the pain.
ü Different relaxa@on techniques (such as progressive muscle relaxa@on, autogenic training,
controlled breathing, biofeedback, hypnosis, imagery) can be used to decrease muscle tension (for reduc@on of generalized arousal), reduce emo@onal distress, divert a]en@on from pain and increase the pa@ent’s sense of control and self-‐efficacy.
ü Physical exercise and ac@vi@es are also used to help pa@ents increase the level and range of their ac@vi@es, but also achieve a sense of control over their physical func@oning. In addic@on, physical ac@vity may facilitate the release of endorphins and consequently reduce percep@on of pain.
ü Cogni@ve coping skills training include various means of distrac@ng oneself from pain. One of the most commonly used means of diver@ng a]en@on from an unpleasant s@mulus is imaging a pleasant scene. The more involving the image is, the less a]en@on the pa@ent can give to other events and therefore the less pain he will experience. Training in distrac@on techniques such as pleasant imagery, coun@ng methods, and use of focal point helps pa@ents learn to divert a]en@on away from their bodily symptoms and severe pain episodes.
ü Lastly, communica@on skills training and asser@veness can modify adverse rela@onal consequences that pain, injury and disability can have on pa@ents: isola@on, rela@onal conflicts, losses of rela@onal roles.
O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale Italiano di Medicina del
Lavoro ed Ergonomia, 29(1), A19-‐A23.
ANKYLOSING SPONDYLITIS TREATMENT: CBT
3. Skills consolida@on -‐ This component of CBT involves the applica5on and rehearsal of these newly learned skills in pa@ents’ home and work environments. Since an important feature of any therapy process is pa@ents’ ability to make use of skills learned during treatment in their daily rou@ne, the psychotherapist and the pa@ent will engage in a variety of techniques to look at any problems that might interfere with being able to complete this goal and resolve them together. For example, the therapist might engage the pa@ent in mental rehearsal, during which the pa@ent imagines using the skills in different situa@ons, role playing and role reversal. The therapist may introduce the role playing to assess the pa@ent’s mo@va@on and ability to implement the training regimen and to assess understanding of treatment components. When a possible problem is found, it will be recorded and discussed together to figure out a possible solu@on.
O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale Italiano
di Medicina del Lavoro ed Ergonomia, 29(1), A19-‐A23.
ANKYLOSING SPONDYLITIS TREATMENT: CBT
4. Generaliza@on and maintenance -‐ The goal during this phase is to learn pa@ents to develop a problem-‐solving perspec@ve in which they believe that they have the skills and competencies within their repertoires to respond appropriately to life events that may be problema@c. This can be done through a review session with the pa@ent in which they cover together what he or she has learned from treatment and how he or she has changed from pretreatment phase. This process can encourage the recogni@on of how the pa@ents’ own efforts contributed to this change. thereby enhancing the pa@ent's sense of competence, self-‐efficacy, and mastery.
**It is important for the pa@ent to acknowledge that in future, there will be good and bad days as everyone experiences and that the key to consistent recovery is not the absence of symptoms but the willingness to manage their adverse condi@ons even a\er a flare-‐up. **
O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale Italiano di Medicina del Lavoro ed
Ergonomia, 29(1), A19-‐A23.
CBT RESEARCH FINDINGS
Research has demonstrated that CBT directed at symptom management is effec@ve in improving psychopathology, levels of pain, disability, joint
func@on and even biological indicators of rheumatologic disease, such as the erythrocyte
sedimenta@on rate.
**The erythrocyte sedimenta@on rate is the rate at which red blood cells sediment, or se]le, in a period of one hour. It is a common hematology, or blood, test that is used as a measure
of inflamma@on.** Sharpe, L, Sensky, T, Timberlake, N, Ryan, B, Allard, S. (2003). Long-‐term efficacy of a cogni@ve
behavioural treatment from a randomized controlled trial for pa@ents recently diagnosed with rheumatoid arthri@s. Rheumatology; 42: 435-‐441.
CBT RESEARCH FINDINGS
Also, research indicates a strong rela@onship between levels of perceived self-‐efficacy
(which CBT focuses highly on improving) and compliance with exercise and medica@on regimes-‐ treatments elements that are of
great importance to the preserva@on of joint health and general well-‐being in chronic
arthri@s.
Marks R. (2001) Efficacy theory and its u@lity in arthri@s rehabilita@on: review and recommenda@ons. Disabil Rehabil; 23(7): 271-‐280.
CBT AND ARTHRITIC PAIN
Overall, CBT is a know effec@ve method for dealing with chronic pain from rheuma@c disease. It enhances the
pa@ents’ belief in their own abili@es, reduces maladap@ve thinking, and encourages developing methods for dealing with stressful situa@ons. Using CBT strategies, pa@ents gradually shi\ their percep@on of being helpless against the pain that their arthri@s brings to the percep@on that
pain is only one nega@ve factor and that is can be managed and controlled.
Also, the use of a cogni@ve-‐behavioral-‐based interven@on facilitates the adjustment early in the disease course to diagnosis, subsequent illness, and possible disability.
ANKYLOSING SPONDYLITIS SUPPORT !
For those who are suffering from AS, know someone who is suffering from AS, or would like more informa@on about it, please log on to the following sites:
Ø Spondyli@s Associa@on of America-‐ h]p://[email protected]/ *This is a great website which talks about AS informa@on and symptoms, as well as offering pa7ent support, access to message boards, physician resources, a support group localizer, and more.
Ø KICKAS.com – h]p://www.kickas.org/ *Known as the “Largest Ankylosing Spondyli@s Support Site on the Web”, this website allows anyone to share with others, and learn from others as well, the experience of coping with chronic inflammatory arthri@s diseases, such as AS.
REFERENCES! Ankylosing spondyli@s. (2012). Retrieved from h]p://[email protected]/about/
as.aspxIliades, C, MD. (2013, March 08). Ankylosing spondyli@s: Dealing with fa@gue. Everyday Health, Retrieved from h]p://www.everydayhealth.com/ankylosing-‐ spondyli@s/ankylosing-‐spondyli@s-‐dealing-‐with-‐[email protected]
Marks R. (2001) Efficacy theory and its u@lity in arthri@s rehabilita@on: review and
recommenda@ons. Disabil Rehabil; 23(7): 271-‐280. O]onello, M. (2007). Cogni@ve-‐behavioral interven@ons in rheuma@c diseases. Giornale
Italiano di Medicina del Lavoro ed Ergonomia, 29(1), A19-‐A23. Sharpe, L, Sensky, T, Timberlake, N, Ryan, B, Allard, S. (2003). Long-‐term efficacy of a
cogni@ve behavioural treatment from a randomized controlled trial for pa@ents recently diagnosed with rheumatoid arthri@s. Rheumatology; 42: 435-‐441.
Yu, D. T., MD. (n.d.). Pa@ent informa@on: Ankylosing spondyli@s and other
spondyloarthri@s (beyond the basics). In UptoDate. Retrieved from h]p:// www.uptodate.com/contents/ankylosing-‐spondyli@s-‐and-‐other-‐spondyloarthri@s-‐ beyond-‐the-‐basics detectedLanguage=en&source=search_result&search=ankylosing spondyli@s&selectedTitle=1~8&provider=noProvider
