Client Story: My life with Psoriatic Arthritis (PsA)

Client suffereing from Psoriatic Arthritis in pool with Nicole Fish at Fish and Field Biokinetics in Sandton

Client Story

When I was asked to do a patient profile, I was, at first, a bit skeptical. But then I realised that I could create awareness. And perhaps something I mention can help a fellow Psoriatic Arthritis (PsA) sufferer.

My journey to diagnosis

I have struggled with morning stiffness or joint stiffness for many years. It took over 10+ years for my arthritis to be diagnosed. I have many co-morbidities, including non-axial spondylar arthritis that is synonymous with PsA which made it more difficult for me to be diagnosed. PsA affects my cervical spine, shoulders, and thoracic spine the most. I am hypermobile in my joints, which means that my joints move even though they feel stiff all the time, leading to doctors not understanding my pain or mistrusting how I present. The standard test doesn’t work on me, and medication and treatment has been a tough journey due to methylation issues and a sensitive stomach that doesn’t always tolerate the medications.

What to expect from Psoriatic Arthritis

PsA is a complex and multi-system inflammatory form of arthritis, and it can affect the skin and nails (eczema, dermatitis, and psoriasis), stomach (IBS, IBD, Crohn’s), and joints. It causes brain fog, extreme fatigue, and chronic pain, and can lead to joint deformities and bone growth as well as multiple other problems. This affects my work, my social life, and so many elements of my day to day.

Managing Psoriatic Arthritis takes a team

PsA also comes with mental health challenges, and why wouldn’t it. Dealing with chronic fatigue, and chronic pain works on a different pain scale to the average “I never have pain” patient. Continuous doctors’ appointments and the side effects of multiple medications are not fun and hence part of my management team is my psychologist and psychiatrist. There is only so much that doctors and medication can do to help with pain and therefore becoming mentally strong to deal with the tough times is vitally important. Having a good relationship with your team, being able to trust them, talk to them and be open with them about not only my physical challenges but how it affects me mentally as well, has been incredibly important in my management.

My team consists of physiotherapists, biokineticists, neuro-physio (to deal with neuropathic pain), endocrinologists, gastroenterologists, rheumatologists, and various other specialists. Without Nicole and Fish and Field Biokineticists, I would not be here today. Nicole has been with me since the start of my journey. Without her, and the others on my team’s guidance on who to see and helping me know that what I am experiencing is real, I never would have been diagnosed.Exercise is the key

Exercise is the Key

Exercise is by far the best thing we can do for our disease no matter how small and how insignificant it might feel. Moving is key. I cannot over emphasize how much exercise (specific to your body and condition) is to manage my Psoriatic Arthritis.

Pacing helps me a lot during the day to not stay stagnant. I have also learnt a few tricks about standing and working with a standing desk. As well as making sure I have different heights under my feet when seated, so I am sitting correctly. Using pillows behind my back and underneath my knees also helps to support me and take the load of my body when I am too tired to keep it up and when gravity just feels like too much to handle. Being in the pool and doing hydrotherapy is the highlight of my week. Being free from gravity for a little while and being able to move more freely in the water has been a great help.

Nicole has managed to deal with me in various stages of my disease. If you were to tell me at the age of 30 that I would be struggling to walk or climb out of bed before 35m, I would have never believed anyone. Nicole has helped me turn this around.

Live one second at a time

Our disease cannot be cured and very few people know how hard going through an autoimmune disease can be. Or how much they can all overlap. But I want you to know it can be managed. I have many days where my mind is so exhausted because of the work, effort and continuous pain to manage this disease that depression and anxiety can get me down. But having your team to help you through the tough flares, constantly learning, figuring it out together, not giving up and knowing this too shall pass has made a huge difference. I now live one second at a time. I know if I do this second right the next one should sort out itself.

Having PsA can be lonely and scary, but you don’t have to do it alone. Be kind with yourself, know that it’s okay to have to adapt your life, and that what you can do in that moment is enough.

Thank you to my multidisciplinary team and especially to Nicole Fish at Fish and Field Biokineticists. I appreciate our floating days in the pool, even though sometimes neither one of us knows what will help. I appreciate her being there and trying even though she knows she can’t cure me. Without her constant check-ins and motivation and just never giving up on me… I would not be able to do this without you Nicole. Thank you for helping me know that I am enough and that there is no one size fits all to PsA.

Should you suspect you are suffering from PsA, have been recently diagnosed, or are looking to better manage your condition, please don’t hesitate to contact us at Fish and Field Biokineticists for assistance.

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