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Psoriatic Arthritis Handbook
Living with Psoriatic Arthritis
How will psoriatic arthritis affect me?
WORK
Work can provide a sense of purpose, identity, achievement, and a supportive social network, contributing positively to your emotional and physical wellbeing.
While your condition may pose some challenges, people living with psoriatic arthritis can continue to work as long as their profession does not exacerbate their symptoms and worsen their health.
People with certain health conditions have defined rights set out in law, designed to protect them against direct and indirect discrimination in the workplace.
Your employer is legally obligated to make “reasonable accommodations” to your working environment and practices to ensure your condition does not prevent you from doing your job to the best of your ability and in a comfortable and safe environment.
For most people, treatment for psoriatic arthritis will involve trying several different medications. Since many people with psoriatic arthritis have psoriasis, managing the condition can seem like treating two diseases. Some treatments work on both diseases, while others work mainly on the arthritis or skin problems.
In the European Union, the definition of reasonable accommodation at work was introduced by Article 5 of the Employment Equality Directive (Directive 2000/28/EC): “shall take appropriate measures, where needed in a particular case, to enable a person with disability to have access to, participate in, or advance in employment,
or to undergo training, unless such measures would impose a disproportionate burden on the employer.” This directive has been transposed into national law in all EU member states.
Research has shown that people who need workplace accommodations and effectively use them are more likely to keep a job and stay productive than those who do not use workplace accommodations (39).
However, asking for workplace accommodations can be difficult. You may be concerned about being treated differently and negative reactions from your supervisor(s) or colleague(s). For this reason, you may prefer to negotiate informal workplace accommodations rather than seeking formal accommodations.
Some of these accommodations may include those supported by the American College of Sports Medicine guidelines for physical activity and public health (40) and the ISO 11226 standard, https://www. iso.org/standard/25573.html, which defines joint limits to safeguard musculoskeletal health. By aligning workplace practices with these scientifically supported guidelines, employers and healthcare professionals can better accommodate the needs of their employees, fostering an inclusive and supportive work environment.
Some examples follow:
Recommendation #1:
Avoid working for prolonged periods in the same position, whether sitting or standing. During the work shift:
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a continuous period of time in the standing position should not exceed 1 hour;
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the total time spent in a standing position should not exceed 4 hours;
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continuous sitting should be limited to 2 hours;
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when periods are dedicated to holding meetings, the duration of which should be reasonable, consideration should be given to the possibility of having them while standing or walking (41).
Recommendation #2:
Take frequent breaks throughout the shift. Please note that he definition of “breaks” must consider the following characteristics:
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Frequency: number of breaks/interruptions during the working day;
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Duration: micro-breaks (less than 2 minutes); short breaks (typically those that occur in the morning or afternoon, lasting between 7 and 10 minutes); or long breaks (meal breaks); and
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Type: passive or resting and active (including stretching or walking) (42).
Thus, in an 8-hour working day, a worker should take at least a 7–10-minute break after consecutive 90-minute work periods.
Recovery periods can include moments of rest or the performance of any other task to recover the muscle groups that have been worked. Within a period of at least 90 minutes, a worker should enjoy at least 30 seconds after 20 minutes of work.
Both recommendations aim to address the prolonged exposure to low-intensity static load by limiting the duration of this exposure. These interventions help to alleviate fatigue and pain symptoms in the short-term, and to prevent work-related musculoskeletal injuries in the long-term. Active breaks add value; however, they do not replace the need to introduce diversity in the intensity of the mechanical load, such as rotational planes suited to the job’s demands (43).
Please note that these recommendations refer to low-intensity, physically demanding tasks. Other recommendations apply to high-intensity tasks, such as those involving manual force.
Recommendation #3:
Physical changes to workstations
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work surfaces (desks) that allow alternation between standing and sitting, alone or combined with a training and information program for workers, reduce sitting time by approximately 60 minutes per working day (in the medium term, i.e., up to 3-12 months). This change in physical working conditions can bring about a behavioural change, with repercussions in an average reduction of 82 minutes in total sitting time per day (at and away from work) and in the average duration of consecutive periods of sitting (57 minutes) (42, 44).
Even though workplace adaptations are consigned in the law, many people living with rheumatic and musculoskeletal diseases report a lack of understanding from their employer(s), colleague(s), and workplace doctor(s).
You have options and rights; it is important to understand them and fully explore all available alternatives. If you are unsure about your rights in the workplace, please get in touch with your HR or occupational health department. More information can be found below: The Advisory, Conciliation and Arbitration Service. (ACAS) https://www.acas.org.uk/reasonable-adjustments
If you require workplace adaptations, please talk to your assistant doctor about the difficulties you have been feeling and request reports to present to your employer and/or workplace doctor.
SLEEP
Pain, anxiety, and side effects of the medication can make it more difficult for a person with psoriatic arthritis to fall asleep and stay asleep throughout the night. In fact, about 40% of people living with psoriatic arthritis report sleep difficulties (45).
Good sleep hygiene habits may help to improve sleep:
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develop a regular sleep routine, that is, go to bed and get up at a similar time each day;
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avoid caffeine, alcohol, and large meals before you go to bed;
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if you smoke, try to stop smoking, or at least do not smoke close to bedtime;
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a warm bath before bedtime may help ease pain and stiffness;
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listen to soothing music or sounds before going to bed;
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avoid watching TV and using computers, tablets, or smartphones in your bedroom;
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make sure your bedroom is dark, quiet, relaxing, and at a comfortable temperature.
The impact of exercising before bedtime can vary among individuals. It is essential to listen to your body, establish a consistent routine, and pay attention to how evening workouts affect your sleep patterns. If you have specific concerns about your sleep or exercise routine, it is also advisable to consult with a healthcare professional or a fitness expert.
Pros:
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Improved sleep quality:
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For some people, engaging in moderate-intensity exercises a few hours before bedtime may promote better sleep quality. It can help reduce stress and anxiety, leading to a more relaxed state conducive to sleep.
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Body temperature regulation:
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Exercise increases body temperature, and the subsequent drop in temperature after exercise can signal the body that it is time to sleep. This mimics the natural temperature drop that occurs during the evening.
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Establishing a routine:
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Regular exercise, regardless of the time of day, can contribute to better sleep quality. Establishing a consistent exercise routine is often more important than the specific time of day.
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Cons:
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Stimulating effect:
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For some people, intense exercise close to bedtime may have a stimulating effect, making it more challenging to wind down and fall asleep.
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Body temperature:
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While the drop in body temperature after exercise can promote sleep, exercising too close to bedtime may disrupt the body’s natural cooling process, potentially interfering with sleep.
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Individual variability:
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People respond differently to exercise timing. Some may find that late-night workouts do not impact their sleep, while others may experience difficulties.
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Recommendations:
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Timing matters:
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Try to finish exercising at least 2-3 hours before bedtime to allow your body temperature to return to normal and your adrenaline levels to decrease.
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Listen to your body:
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Pay attention to how your body responds to evening workouts. It might be a good fit for you if it helps you relax and improves your sleep.
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Experiment:
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Everyone is different. Experiment with varying timings of exercise to see what works best for you. If evening workouts negatively impact your sleep, consider shifting them earlier.
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Moderation is key:
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Intense or vigorous exercise close to bedtime might be more likely to interfere with sleep. Opt for moderate-intensity activities in the evening (47).
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Nearly 50% of patients living with psoriatic arthritis report high levels of fatigue (five or higher on a 10-point scale) and consider fatigue a high-ranking problem, after joint pain and before skin issues (48).
FATIGUE
Problem solving, planning, prioritising, and pacing may help you cope better with your fatigue:
PROBLEM SOLVING
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Identify factors/tasks/chores/activities that are contributing to your fatigue;
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Think about solutions that could help minimise the impact of these factors/tasks/chores/ activities.
PLANNING
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Plan the tasks/chores/activities you want to complete in a day or week;
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Make sure to include activities that you enjoy and can improve your mood/wellbeing;
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Do not beat yourself up if you cannot stick to the plan.
PRIORITISING
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Organise your tasks/chores/activities by order of importance.
PACING
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Do not use your energy all in one go;
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Break the planned tasks/chores/activities into smaller portions that can be spread out over the course of a day, a week or even longer.
EMOTIONAL WELLBEING
Living with psoriatic arthritis can take a toll on your mental health (49, 50). You need to treat mental health symptoms as seriously as physical symptoms.
Poor mental health can cause your psoriatic arthritis to flare, increase pain and fatigue, negatively affect your work and personal relationships, and limit your ability to manage your overall health.
If you feel sad, hopeless, and lose interest in things you used to enjoy, talk to your doctor, and let your loved ones know what you are going through. Your doctor may redirect you to useful mental health services such as cognitive behavioural therapy (CBT) and/or they may prescribe you an antidepressant.
Remember that you are not alone.
If you need extra support, we are here to help you:
NHS Mental Health Services
VERSUS ARTHRITIS / Psoriatic arthritis
