Living Well with Spondyloarthritis
Living with spondyloarthritis is not easy, but thanks to advancements in understanding and treating the disease, it is possible to live well.
For most patients, their journey begins with the onset of symptoms and an often lengthy time to diagnosis. A recent CSA survey shows that Canadian patients waited up to (or average) of 7 years before they received a proper diagnosis of their condition.
Once someone is diagnosed, the journey may take a positive turn with medication and other disease management strategies, or it may continue to be progressively worse. Living with a chronic health condition like spondyloarthritis is physically and mentally demanding. Regardless of what direction your journey is going, there are many things you can do to optimize your health outcomes.
Many patients who live with SpA conditions such as Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), Enteropathic Arthritis (EnA) and other spondyloarthritic conditions lead long, active, healthy lives and are able to manage pain and other impacts of their disease well.
The Canadian Spondyloarthritis Association aims to help people living with SpA to not just live with their disease, but to thrive to the extent that each individual can in their own personal circumstances. Thriving may look different from person to person, but with the support of your family, health care practitioners and others who also have SpA, you can live well with your condition.
These resources are intended to help you regardless of where you are in your patient journey. We encourage you to review them and to speak with your healthcare team about areas of your life that are impacted by your disease. We also encourage everyone to connect with others who live with SpA through CSA support groups online, in communities across Canada, and through social media. Together we are stronger and we are here to help you get the information, support and connections that you need to live well with SpA.
How I Live Well with Spondyloarthritis – Advice and Personal Stories from Other Canadians
Katie’s Story – Young Adult Feature
“God gives challenges to those who are strong enough to overcome them” ~ Unknown It was a particularly bad flare, not too long ago, when my mom turned to me quite randomly and asked, “do you remember what it feels like to not have back pain?” My response, “no.” As...
Getting the right diagnosis changed my lifeLike so many Canadians, Marilyn Walsh had her life plans derailed by the devastating effects of arthritis. Fortunately, a proper diagnosis and treatment helped correct years of pain and suffering, and now Marilyn is devoted...
Jen’s Story – Young Adult Feature
My name is Jen and I live in Northeastern Ontario. I am currently 26 years of age and have been diagnosed with two forms of inflammatory arthritis: undifferentiated connective tissue disease and axial spondyloarthropathy with peripheral involvement.It was towards the...
In retrospect, I think the first signs of AS started about 25 years ago, when I was about 40 years old. I remember lying on the floor and my back was really stiff when I stood up. I never thought much about it as it would quickly disappear once I walked around. Around...
Throughout my life, I always felt like the pain had a name nobody could speak. Joint pain in my early teens was dismissed as “growing pains”. Always active, I heard throughout my life that stiffness and pain came from over-doing it with weights or training too hard...
Hear former CSA president Gerald Major tell his story and put his life on display to create awareness in honor of national Psoriatic Arthritis Awareness Day.Catch the Facebook Live Chat event here:https://www.facebook.com/events/507853236461725/
We would love to hear about your experience with this disease. Share Your Story! Your insights may help another person somewhere along their own spondylitis journey.
Learn how to live well with Spondyloarthritis
While there is no cure for SpA, proper management of the disease as early as possible is essential. Exercise plays a significant role in pain management in SpA. Many patients have found immense benefits in symptoms when undergoing regular physical activity. Something as simple as integrating daily stretches or walks into your routine can help with pain and stiffness and the progression of your condition. Some studies have shown that you should be careful with the kinds of exercises you choose. In general, exercise is good for you, but some exercises will only put additional unwanted loads on your bones and joints. Furthermore, there are certain exercises that have shown to be particularly beneficial for people living with ankylosing spondylitis and other forms of spondyloarthritis.
Below we have suggested a few ideas to help you get started with the right kind of exercises for your type of SpA. Remember, any movement is better than none, and a little can go a long way.
How to add exercise to your SpA tretment plan:
- Be sure to stretch. Any exercise is good exercise. But, no matter what you do, stretching at the start is key to preventing injury and maximizing benefits. Targeting key areas such as your hips, glutes, hamstrings, chest and shoulders can take a significant amount of tension off your joints.
- Try supervised and/or group classes – Rather than depending on at-home routines, it can help to commit to a class or weekly supervised session. Shared, scheduled exercise is often easier to stick to, safer, and of course, more fun!
- Consult your doctor and a physiotherapist. You should always speak to your health care provider before starting an exercise program. To maximize the benefits of exercise, you can also consult with a physiotherapist about exercises that will particularly help, like spinal extension.
- Be kind to your body. While movement is good for you, pushing yourself to the point of pain is never a good idea. If you’re just starting with a new exercise program, take it slow and steady so you can build your strength and stamina
- Try Yoga and Stretching for SpA. CSA is proud to partner with Yoga for AS, a group of British axSpA patients who are certified yoga instructors. They have built a unique program of stretching and yoga that are targeted to help reduce inflammation, pain and stiffness for people living with spondyloarthritis. For more information about this program and how to sign up to get access to free video instructions and resources from Yoga for AS, visit our Yoga & Stretching for AS page
While there is currently no cure for spondyloarthritis (SpA) conditions, receiving an early diagnosis and using the appropriate management techniques such as exercise and having a balanced diet can help you cope with your symptoms and reduce your risk of complications.
People with inflammatory conditions, such as spondyloarthritis, have an increased risk of heart disease. As such, it is especially important to incorporate healthy eating, regular physical activity, good sleep, and stress management techniques. Each of these areas of a healthy lifestyle can also help you manage the pain, fatigue, and stress that comes from having a chronic illness.
How to adopt healthy nutritional habits when living with SpA:
- Establish a healthy eating plan: Like many other diseases, there is no size fits all approach. Talk to your healthcare professionals to establish the best eating plan to manage your symptoms best. For example, some people who live with SpA find that an anti-inflammatory or the Mediterranean diet worked well for managing their condition. More information can be found in our past webinars
- Supplements to manage symptoms: Speak with your primary care provider, dietitian, or pharmacist for more insight into supplements you can use to help manage symptoms of SpA.
- Avoid excessive drinking : While alcohol in moderation is not bad for SpA, anti-inflammatory medications and alcohol can affect the stomach lining and should not be taken together. Overconsumption of alcohol can also have negative effects on your liver and other body symptoms. If you are concerned about your alcohol intake, talk with your primary care provider, mental health provider, or look up your local Alcoholic Anonymous chapter.
- Don’t smoke: Over time, SpA reduces the capacity of the lungs, and smoking can make this even worse, making you more prone to lung infections and shortness of breath. This is in addition to the many other negative effects of smoking. Speak to your primary care provider or pharmacist about options to help you quit smoking.
Finding ways to manage your disease is about understanding your unique precursors and triggers. Once you understand how your body feels before a flare and the things that can trigger them, you can apply different strategies and techniques to help you better manage. Prioritizing a nourishing diet, daily movement, sleep, and mental health is a daily commitment to your overall health and wellbeing.
Strategies such as mindfulness and journaling can help you to better understand your mind and body. As you begin to see connections, you can better respond in the future. However, many people jump straight to cutting out foods or entire food groups when looking for ways to improve their symptoms. In many cases, that isn’t required. The missing piece of the puzzle may be something that you need to add. To learn more about healthy eating and SpA, be sure to check out our webinars.
Not everyone who lives with SpA will need accommodation at work. However, based on your situation it may be beneficial, and even necessary, for you to get accommodation in the workplace. By optimizing your work environment, you can be more comfortable and perform better work.
How to ask for accomodations at work when you live with SpA:
- Communication: You are not legally required to disclose your condition to your employer; however, it may be helpful to speak to someone at your workplace, such as a human resources representative. By maintaining an open conversation, you may be able to work together to determine what will work best for you, adopt, and make changes as you go if something is not working well for you.
- Ask for accommodation: Not everyone who lives with Spondyloarthritis will need accommodation at work, but it can be another useful tool when managing your symptoms. This can include using ergonomic devices, modifying duties so they are not as physically demanding if possible, and asking for flexibility in scheduling (e.g., part-time or work from home when needed).
- Consult with your doctor and other healthcare professionals: Have a discussion with your healthcare provider about your occupation and how your disease may impact it. Your healthcare provider may be able to give you tips about possible accommodation in your workplace. You may also want to meet with an occupational therapist who can help you optimize your surroundings based on your condition.
- Employee Assistance Programs (EAP): Many employers offer EAP services to their employees as part of their benefits package. If your employer has an EAP, this may be a source of information and support for you on work and non-work related issues.
- If you are ready to have a conversation with your employer or the HR department, use this printout to facilitate your conversation. This document can help your employer better understand SpA, how it can affect your performance at work and how they can accommodate your needs.
Before this, I’ve worked as a barber part-time and tried other forms of employment. I always had issue with my condition getting in the way of my working. Work balance is important for me, as I live a very unpredictable medical condition which can affect my mood or ability to work.
More CSA resources on employment:
With a chronic illness like SpA, sex might be difficult due to the pain, stiffness, and other symptoms associated with the condition. However, that doesn’t mean it can’t be satisfying and fulfilling, it may just look different.
How to live a fulfilling sex life with SpA:
- ARC: Always Respect Consent: You Can Always Say No. If sex isn’t working for you at any given point, you can just say no and end the encounter. A partner who respects your bodily autonomy will understand that sexual activity isn’t always possible, and will be willing to help you find pleasure some other way. Do not feel pressured to do something that you do not want to do, for any reason, but especially with respect to your
pain. You will be the one that has to live with the consequences to your body, and so you should always put yourself and your health first.
- Communication: When it comes to getting physical, communication is key in order to figure out what works for you and your partner. Always keep open lines of communication with your partner, letting them know how your diagnosis is affecting you and what makes you feel good.
- Treat your underlying condition: In general, the best way to alleviate the discomfort you experience from your disease during sex is to treat the disease.
- Plan ahead: Reject the notion that sex needs to be spontaneous. If there is a time of day when your body feels better and ready for sex, then plan around that time. You can also time your medications to ensure that they are having their maximal effect during your sexual encounters. It may also help to use heat packs, balms or stretches to loosen up your joints before having sex.
- Use props: The use of pillows, rolled towels or sheets and even specially designed furniture can help take pressure off of joints.
- Try different positions: Sitting, standing, or kneeling, whatever works best for you! Creakyjoints has an article depicting different positions that are more comfortable for people living with arthritis.
- Use sex toys: Sex toys can be great for sex with yourself and they can also elevate sex with a partner. There are also a variety of adapted sex toys that exist for people with disabilities.
As a person with a healthy libido through my early 20s, it was shocking to watch it fade away in the years leading to my diagnosis. Trying to keep a healthy sex life can seem like a challenge, both physically and mentally, but essential to your wellbeing. Communicate this to your romantic partner and help them understand what works for you and what doesn’t.
Living with SpA has its challenges beyond pain, stiffness, and fatigue. It is often incredibly isolating, especially when you’re first diagnosed. While it may lead you to avoid certain social activities and distance yourself from others, this can negatively impact your overall health, causing depression and anxiety. Drawing on the support and encouragement of your family, friends, and spouse throughout all stages of your SpA journey is essential. While it may be especially challenging to explain your condition to your loved ones, you’re the only one who can help them understand SpA , how it directly affects you, and how they can be a positive support outlet for you.
How to cultivate and maintain relatiosnhips while living with SpA:
- Talking to family, friends and spouses: Although your loved ones may be supportive, there are many aspects of SpA that they may find difficult to understand. . Try to explain what SpA is as well as how it feels in your body. If you feel comfortable, you might want to consider bringing them to your next rheumatologist appointment so that they can learn more about your condition and ask any questions.
- Talk about your symptoms: SpA can affect your everyday life, so it can be helpful to let people know how you are feeling and if the pain, stiffness, and fatigue might change your daily habits. Use descriptive language and analogies that everyone can understand. eg. ‘When I am having a flare-up, my joints feel like solid concrete – they’re not going anywhere.’ When people can understand SpA in practical, relatable terms, they can see why SpA can cause you stress that affects your mood and help you talk about your feelings.
- Share how you manage: The people in your life might not know about the ways you handle your SpA. You may want to tell them about your treatment plan so they will know what to expect. This can include the physical activity you need to do, nutritional needs and medications you take to manage your SpA. If you find it helpful, share with your loved ones the Spoons Theory system of health management, and ask them to use the language of spoons when communicating with you about your abilities.
- Forming New Friendships: It can be challenging to maintain or forge new friendships when you have a chronic condition like SpA. Many members plan ways to get together with people, take group exercise classes, or pick up a new hobby.
- Join your local CSA branch or support group: Organizations like the CSA are dedicated to helping people with SpA. We offer resources about SpA to help you and your loved ones better understand the conditions and get support for it. Be sure to expand your support circle beyond your family and friends and join a support group near you. You’ll have the opportunity to meet others with similar experiences who will understand what you are going through and provide advice and tips
Sometimes AS can make your life unpredictable. Flare ups can happen and they can ruin plans you’ve had with your partner, friends or family. While it’s easy to blame yourself and feel guilty, remember that you’re going through something that you have no control over. Be sure to voice your concern and ask for help when you need it. There’s no shame in that.
Talking to Healthcare Professionals
Some healthcare professionals you may work with:
- General practitioner
How to advocate for yourself with your Healthcare Professional when you live with SpA:
- Advocate for yourself: the time to diagnosis is often delayed and varies between 5 to 10 years after the onset of symptoms. A delay in diagnosis can lead to a delay and treatment and may result in irreversible joint damage. This is why it’s important to be relentless when searching for a diagnosis. If you are not yet diagnosed and you resonate with some of the signs and symptoms of SpA, take this questionnaire. You can take the results to your next doctor’s appointment if you suspect that you may have SpA. Remember, you know your body best and if you believe you are living with SpA condition it is in your right to discuss it with your healthcare provider.
- Communicating effectively and honestly: Even if the topics feel uncomfortable sharing or you think they are not important, it is important that you openly communicate with your healthcare professional. Being informed and involved in your care is an essential part of getting the best care possible for your SpA.
- Maximize your medical appointments: It can be helpful to plan ahead of your medical appointments. This can include making an ongoing list of all your questions and concerns before meeting with your healthcare professional to ensure you get the most out of your time.
- “I always bring a list of questions and symptoms so I don’t forget. If I have more questions later, I email my doctor’s office via the patient portal.”
- Use our Arthritis Medication Benefit-Risk Management Tool: CSA has partnered with Carolyn Whiskin, Pharmacist, to develop a new tool to help you think through your concerns and goals with respect to medication and the risks and benefits associated with different types of medication used to treat SpA and other forms of arthritis. The tool is easy to use and can be freely accessed here. You can then take the results provided by the tool to your healthcare practitioner(s) to make informed choices about what is best for the treatment of your disease and your unique concerns.
- Bring information or anything else you may need: Consider bringing all your medication or a list with the amount you take at one time and how often you take it. This can include any natural or complementary health care products, such as herbs and vitamins.
- Bring a family member or friend: It can often help someone listen and even take notes. It is hard to remember everything that is said at an appointment, and it can make a big difference to have someone there to remember details and ask questions
My advice when dealing with healthcare professionals is to ask questions and then ask more questions. Make sure if you’re dealing with more than one specialist that you are self advocating for your own care and asking all professionals to communicate with one another regarding your care. I have many side effects from my AS and medication for it so I am under the care of a cardiologist, rheumatologist and a gastroenterologist. It is important to share conditions, medication and symptoms with all healthcare professionals. SELF ADVOCACY or having a person in your life that can advocate for you.