Psoriatic arthritis: “I've gone from being extremely active to completely disabled.”

Hello Bibi4384, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a bit about yourself?

My name is Brigitte, I'm 51 years old and I'm in a civil union without children. I live in a detached house with a large garden in the south of France and I have a dog. 

I have been working in a day care center for 26 years, initially as a childcare assistant, I became a childcare worker through the VAE (validation of acquired experience) in order to be less present with the children because of my condition. 

I like everything that has to do with nature, walks, gardening, animals, as well as DIY and crafts. 

You have psoriatic arthritis. Could you tell us what the first symptoms were? What prompted you to seek help? 

Apart from psoriasis since I was 30 years old, I was doing quite well before joint and tendon pain started to become almost permanent in my knees, shoulders, feet, fingers, and wrists. Around the age of 35, I started to have to take painkillers regularly without the doctors becoming too alarmed. Then the abdominal pain appeared, along with serious digestive problems and a permanent state of tiredness. The doctors just said that I was "too stressed".

When were you diagnosed? How long did it take for you to get the diagnosis? How many specialists did you see and how many tests did you undergo? 

I was diagnosed in 2019 after years of wandering healthcare and misdiagnoses as I had been complaining of joint pain since 2007. 

I consulted many general practitioners who did not necessarily give me any tests but advised me to take anti-depressants; the dermatologist just prescribed basic creams available in the chemists. 

At first, I was diagnosed with endometriosis, which was never really proven by tests, but I stopped getting my period at 40. 

In 2015, after a consultation at the ER for sternum pain, the intern on duty wrote to my primary care doctor to look for psoriatic arthritis; I therefore had a series of blood tests, X-rays (wrists, hands, pelvis, cervical and lumbar spine...), ultrasounds (knees, elbows, and wrists) as well as a bone scan and I consulted a rheumatologist. Despite my insistence on painful, swollen, and red joints, he diagnosed fibromyalgia and told me to see a psychiatrist. 

I then consulted a naturopath who had me follow the keto diet with total avoidance of gluten and dairy products because she detected the presence of candida albicans* as well as heavy metal poisoning. I followed her prescriptions scrupulously, my psoriasis disappeared completely, I lost 10 kilos and my pain improved.  

*Candida albicans is an opportunistic pathogenic yeast (a type of fungus). It is a normal part of our gut flora and lives is various warm, most areas of the body, such as the mouth, vagina, rectum, and part of the skin. When there is an immune or hormonal imbalance, it can grow out of control and cause a yeast infection called candidiasis. 

My primary care doctor referred me to a pain center where I saw a psychologist and had auditory and visual stimulation sessions. I continued to live more or less normally and to work despite the constant pain. 

In 2019, following two consecutive falls and a compressed vertebra, I consulted a rheumatologist who, after examinations, diagnosed osteoporosis and prescribed balneotherapy (thermal mineral water baths) sessions with a physiotherapist. I stopped my diet, the pain and inflammation returned with force and faced with the physiotherapist's skepticism about the fibromyalgia diagnosis, I took photos of my joints and went back to see the rheumatologist who finally made the diagnosis of psoriatic arthritis. 

How did you feel when you were diagnosed? Had you heard of psoriatic arthritis beforehand? Did you receive all the necessary information about it and its treatments? 

I was relieved by the diagnosis even though I was angry that I had wasted so much time. 

The rheumatologist put me on methotrexate without much explanation about the disease, so I searched on the internet for more explanations and, as I couldn't handle the medication at all because of the side effects, she directed me to the university hospital center in Nîmes, telling me that she was retiring. 

I also found a new primary care doctor who was more attentive and who, given my pain and while waiting for the treatment prescribed to be the university hospital, decided to put me on sick leave. 

How has your condition evolved? What impact does it have on your daily life? 

The disease has progressed a lot in the last two years, and it has become very incapacitating in everyday life. I find it increasingly difficult to move around, I'm always in pain somewhere and I'm tired all the time. At work before my sick leave, in spite of a change of job role following the vertebrae compression, my issues became more and more visible. I could no longer carry the children or sit on the floor with them. I couldn't do anything after my working day, I had no more hobbies or social life, just lying on the sofa or sleeping. 

I felt like I was always dragging myself around with no energy, no taste for anything and on the verge of depression. 

What treatments or medications do you take? Are you satisfied with them? What kind of care have you received? 

I found real support from the staff at the university hospital who, after a series of tests, validated my diagnosis and put me on Cosentyx® (secukinumab) injections (300mg every month), while explaining this condition to me in more detail. I also have a new rheumatologist, who is more available if I need. 

I am also very careful with my diet because, following the keto diet, I can no longer tolerate gluten and very few dairy products, which causes a lot of digestive problems that end up causing joint inflammation. 

I do a lot of balneotherapy with physiotherapists (2 hours a week) as well as gym sessions, yoga and I have started walking every day with my dog. 

I also see a psychologist every month. 

The pain is less present in my daily life, but I am still extremely tired and as soon as I force myself a little too much, the pains come back. Nevertheless, I no longer have any psoriasis. All I have to do now is to stop smoking as soon as it is possible for me. 

Has psoriatic arthritis changed your life? If so, what did it change? 

Psoriatic arthritis has changed my life. I've gone from being extremely active to completely disabled. It was very hard for me to adapt to all the restrictions that the pain and fatigue imposed on me. 

In the end, it was the forced isolation due to COVID-19 that allowed me to rebuild myself and accept the ups and downs of this disease. I finally take care of myself and listen to my body; I finally accept the idea of changing jobs or even being placed on category 1 or 2 disability. 

I have relearned to take pleasure in my daily life through nature, music, walks with my dog and above all the urgency to preserve myself physically and psychologically.

Are you able to talk openly with your loved ones about your condition? Do they understand what you're going through? Do you feel supported? 

I talk about it more and more easily to those around me, even though there are not many people left after my years of suffering. The people who are left are very supportive and, even if the effects of the disease are not always very visible, they are more receptive to my pain or my state of fatigue. 

What do you think of patient exchange platforms like Carenity?

I think that you find more comfort and understanding from people with the same disease. That's why I wanted to sign up on a patient exchange platform. There is always advice to be gleaned, the experiences of others are helpful and it's good to be able to express oneself freely without judgement. 

Finally, what advice would you give to other Carenity members also living with psoriatic arthritis?

I would advise people to talk about their condition so that one day primary care doctors, dermatologists, or rheumatologists will listen to them and take them seriously instead of advising them to take anti-depressants. The more testimonials there are, the more doctors will be informed, and diagnoses will perhaps be made more quickly. 

I think that all patients with psoriasis should be informed about the possibility that their joints could be affected and become psoriatic arthritis. 

Any final words? 

Yes, it's a disabling disease, but once you've found your rhythm, you can still do a lot of nice things and live almost normally. 

Many thanks to Bibi4384 for sharing her story with us on Carenity! 

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