How I Coped After My PsA Diagnosis

This is my experience of being diagnosed with Psoriatic Arthritis (PsA), coming to terms with the diagnosis, and trying to continue with my career and life. Everyone will have a different story to tell but this is my story.

Difficulty working with PsA

I had struggled to work full-time 12 ½ hour shifts. It started as a very painful right foot, to the point of not being able to walk by the end of my shift. My foot was hot, extremely painful and swollen. Of course, I went to the GP several times and was given the same diagnosis every time. It’s sprained, and it’s a little bit of arthritis.

Agonizing pain

The final straw for me was when I had forced myself into work, but in total agony unable to walk, foot hot, swollen and very stiff. I booked into A&E and the X-ray showed very little other than a bit of arthritis and yet again I was diagnosed with a sprained ankle. I took a couple of weeks off work and the swelling and hotness settled but the pain remained the same.

New psoriatic arthritis symptoms

This carried on for two frustrating years with swelling, hotness, and pain on and off all the time, but with new symptoms now taking over. My disease was progressing rapidly. The pain in my foot became pain in both feet. Other joints had joined in too, including my shoulders, neck, elbows, wrists, fingers, and knees with joints fusing and stiff. It was taking me considerably longer to get up in the morning. I was so stiff and in pain. I was waking in sleep with pain. I had had enough.

Rheumatologist refferal

People had started commenting on my stiff neck and bad feet. So I booked into my GP again but this time with a senior GP. With knowledge of arthritis, she suggested that I might have PsA as I had scalp psoriasis and two patches on my elbow. I had never considered my psoriasis as a factor. I was not badly affected in my mind and had never heard of PsA. My grandmother and dad had full body psoriasis and didn’t appear to be struggling from arthritis other than the normal ache and pains they would expect at their age. I finally was being referred to the rheumatologist at the hospital.

Struggling with simple tasks

By the time I got my appointment, work was beginning to be a real struggle. I am a pediatric sister working on a busy general ward in my 40’s. Mixing day and night shifts, it can be exhausting at the best of times but something was making me feel so much worse. My brain was very foggy. Keeping concentration was getting harder and I was exhausted all the time. Even on days off, my pain was unbearable and I felt very unwell. My joints prevented me from fully being able to do the most simple tasks, for example, opening a bottle of medication, or holding a baby.

The beginning of my PsA diagnosis journey

I was finally seen by the rheumatologist, well the registrar, a very quiet one at that. My first experience was having to ask her to speak up for me, as my hearing is not the best. Ok, I have hearing aids and choose not to wear them. Anyone who wears them will tell you that you're ok if the person is in front of you but by the side and behind you they're useless. Anyway, that is another story. The registrar asked me what my occupation was, symptoms and affected joints. She presumed I understood every word she went on to say. I only remember the one sentence "I agree you have PsA, from the examination you have a progressive autoimmune disease that causes disablement and joint fusion. You need to avoid people with infections." Nothing else from that point went in. I left with total deflation, I was not upset with the diagnoses, in a way it was a relief to know I was not imagining my symptoms. The biggest worry for me was that I was not in control of my treatment or life anymore, I left with an appointment two weeks later to have a steroid infusion and meet the team. "Team? What team?" I asked. Oh, you will be seen by a nurse and your consultant to tell you what medication you require. Medication. I require medication for life!! I was sent to phlebotomy for numerous blood tests and a chest X-ray. The rest of the day is just a dream.

What's an office visit like?

Ok, I was like everyone else these days and asked Dr. Google about PsA. Worst thing I ever did. I immediately thought my career was over. In fact, my life was over. I was heading to be disabled even wheelchair-bound. What will I do?... I arrived at medical day treatment and was greeted by the nurse and told to take a seat. Everyone around me was older and had obviously been many times before. Out came newspapers, bottles of water, sandwiches, one lady was even knitting. One chap was talking away to the nursing staff like they were friends. I thought what on earth am I doing here? I am a nurse, not a patient. I am not ready for this.

A rough doctor appointment

Then I was cannulated and started on an infusion for four hours. It could have been anything if I had not the knowledge to know it was steroids. Then a short time later the rheumatologist nurse appeared like a whirlwind with a form to fill out and a booklet that apparently I needed to keep clean and bring to every appointment. It was obvious she had been doing her role for many years. There was no empathy. No time to ask questions or understand. She was talking so quickly to the consultant with numbers and words of medication I couldn’t even pronounce. I never took anything in that she had said. She disappeared and returned with a fair few leaflets for me to read and informed me that I would get appointments for occupational therapy and physio. I have ordered your medications to take home, but do not start these until I see you next week. What next week? I have to come back again!!! On leaving with a wad of leaflets and medication I must have appeared like a rabbit in headlights. I was totally stunned, exhausted and broken.

Support for people with psoriatic arthritis

I took to social media support groups. Reflecting now, this was way too early. The comments from others were misleading and scary. It was clear that I was not the only one confused by it all. It was apparent that it was a - I am worse than you, I take this and that. Try herbal medication etc. Not particularly good for newly diagnosed. I did get private messaged by two local ladies who also were nurses or had been nurses. Which was very supporting and reassuring.

Seeing another specialist for PsA

The next visit a week later, I was introduced and seen by another nurse specialist who was quieter and calmer. She explained more about PsA and the medications, that had been staring at me in my kitchen, I had been too afraid to look at what was in that bag. I was warned of side effects from medication. Advised that I might need to take time off work until the medication settles down. I met the physio and more leaflets to read.

Worried about life with PsA

I was not upset with having so many medications, the biggest worry for me was this is for the rest of my life. Not a pill you just take when you have pain. Ok, you get the information leaflets about the medication but that doesn’t prepare you for the reality of it. If I had known then what I know now then I would have completely broken down; so it is probably the best that I was none the wiser at the time. I thought it would be a case of taking some tablets and if I did not take them then I would just have some pain in my joints, but so long as I took the tablets, I would be fine. I could not have been so wrong, and I did not know that I was entering into the fight of my life. These tablets were no paracetamol...

Sharing with relatives and loved ones

I never spoke to my family or friends much about my diagnoses at the time, we had some other family illnesses and issues happening. I just told them the diagnoses and I was being treated. I didn’t want to worry my family. My friends wouldn’t understand, would they? This was totally the wrong thing to have done. I was alone with no one to talk too. I was worried about work, being single, and living on my own in my own house. I worried about money and what if I could not work. My only support was my pet rabbits who I had to keep going for.

Work life and isolation

I soon realized I needed to tell my manager about my diagnosis. The side effects of methotrexate had prevented me from working. The brain fog was worse, vomiting and nausea was awful, and the pain in my joints was increasing, now with swelling and multiple joint stiffness. I had totally isolated myself from everyone. I was anxious, scared and alone. I made excuses up not to see family and friends.

Finding help to manage symptoms

My only saving grace was seeing the occupational therapist, who showed me how to cook and do things differently. I attended a hand group and with the exercise advice, I was able to get strength back in my hands and meet some other people with similar issues. But this was only a short fix. My head was so muddled I attended physio. Looking back, I thought PsA was an easy fix, a bit of physio and tablets I would soon be fine right? Although I could hear the physio, I was not taking the information in.

Mental health and coping with PsA

I came close to being depressed, but something was pushing me forward. The slither of hope that one day I might get better kept me going. Then it happened...my physio smiled and asked me right out how I was feeling. “I just want it all to go away” was my answer, but deep down I knew it wouldn’t go away, but by acting this way I could deny it was happening. I wasn’t going to be the patient. She advised me to take one step at a time and it was alright not to be ok, to be angry and not cope. She encouraged me to talk to her and talk to my family and friends, not to be afraid of asking for help. Physio is not easy at first. I was fighting demons in my head telling me to give up. Stiff, fused joints and pain. The physio encouraged me and taught me you can push your body more than you think you can. With perseverance and determination, I am getting movement and strength back. I will always be thankful to the physio for the advice and passion she had shown to me. Without her, I wouldn’t be how I am today. I was broken, confused and lost.

Depression and psoriatic arthritis

I confided in my best friend. I had taken the first step toward coping and acceptance. I made an appointment with my GP and commenced on anti-depressants. It was no quick fix!!! I eventually went to counseling to understand why I was feeling the way I was...realizing that you have to go through a grieving process to move forward. I can not stress how important it is to explain your condition to everyone, especially your family and close friends, acknowledging you need help and support and letting them help you. At the same time, do not give up. Find your own way to do things that you struggle with, by using adaptions and coping methods. It is ok to rest when fatigue sets in. It is ok to cancel social events sometimes. You just have to care for yourself first. My friends did get it, and took time to learn about PsA and how they could help me. They would pick me up from home so I never had the chance to cancel and hide. They would sit with me on the bad days and never judge if the house was a mess or I was still in pajamas. They would let me sleep and they would do simple tasks around the house with no thanks required. I knew I could message them on a bad day and they would talk and reassure me to not give up.

Talking with my boss about PsA

I attended a meeting with my manager and Human Resources I was asked how they could support and help me at work. I explained that I love my job and that I did not want to have to stop doing what I am doing. I was referred to occupational health. They explained my rights as an employee. I currently have reduced my hours, adjusted my role where I can vary my daily tasks. This has enabled me to keep working. There is support if you ask. Be firm, but sensible. My manager, human resources department and occupational health are working together to enable me to keep working. I provide updates on appointments and progress. I even asked my manager to attend a meeting together with my physio to understand about PsA and the limitations of having it. The support I needed at the time. It was making management and colleagues understand PsA is a long term condition with no cure. It has not been easy at work. Making colleagues understand the diagnosis and the backbiting comments are very hard. You know the, “She does not look ill”, “Why is she allowed to wear trainers”, “Why is she still unwell, it is over a year ago”, “Why can’t we all do short shifts?” etc. But you learn to ignore the remarks, stay focused explain PsA to the negative and carry on. My manager recently asked me to increase my hours. I was able to take control and make her understand I was not ready to increase at present although financially it would be a benefit. My body was not ready to return to full-time work.

Persevering through flares

I could have easily given up treatment. The drugs were not working. I was in a constant flare. I was seeing different nurse specialists with different opinions and personalities. The pain killers were not making a difference so I stopped taking them unless the pain was unbearable. But with support and encouragement from a very passionate determined physio, who kept me looking forward not backward, I would pick myself up, dust myself down and carry on. Reflecting on what she had said and being encouraged to look at the changes in my mobility and strength drove me on.

Psoriatic arthritis treatment side effects

Methotrexate was good for my psoriasis, my skin has very nearly cleared up. But not good in controlling my joints. If anything, in the beginning it caused me more pain and swelling. I was finding the side effects difficult. Vomiting and nausea was unbearable and I was given the option to switch from tablets to injection. This was one of the best decisions I have made. The nausea and vomiting settled and, ok you have to inject instead, but it is easy, quick, and pain-free. I was commenced on sulfasalazine for me. This was a total waste of time. No effect whatsoever other than discoloured urine. My PsA continued to be active and Inflammatory markers raised. It was decided to finally go forward with biologic treatment but more tests had to be done first, HIV, TB Bloods, breathing test and CT scan. The results for bloods were all ok but the CT scan I had showed a cyst on my lungs and thyroid gland. So more tests!! All benign and being monitored.

Symptoms improvements on biologics

I finally started adalimumab biologic similar in November 2019. The first 4 injections were strange. Body clicking/popping and tingling and slow improvement in joints. Then early 2020 inflammatory markers in my blood finally started to fall not quite normal but not far away now. The foggy heaviness feeling has lifted from my head. I feel I have more energy and I'm able to move my joints easier. The pain has settled. I feel more confident and my smile is back. Getting up in the morning is quicker no longer do I need to sit on the side of the bed and make myself determined to get up. I can just get up now. Don’t get me wrong, I still have bad days when fatigue knocks me off my feet and pain in my joints prevents me from doing things I had planned. But that’s ok now. It’s just my body reminding me to slow down, recharge and go again.

How PsA has made me stronger

In reflection, having PsA has changed me. It's made me stronger, confident, and determined. I have stepped back and looked at my own practice in nursing and the families and children I meet. I make sure they understand diagnoses, where to get further support, and have time to ask questions and most importantly I listen to them. I also have a better understanding in supporting my colleagues. I am aware to watch how my colleagues are coping with pressures at work and support them by letting them know they can talk to me. I no longer lower my head when people ask what is wrong with me. I confidently answer with I have an autoimmune disease, PsA, but I am in control of it. My eyes have been opened to the lack of support and consistency in treating autoimmune diseases. It is my wish to help others understand that they are not alone!! Talk to someone how you are feeling.

Hope and encouragement with PsA

If you are reading my journey then please pay close attention to this. I hit rock bottom I couldn’t see any meaningful future. My career was in tatters. I felt worthless and felt I was a burden. My body was not responding to any drugs, I hated my appearance, I cut myself off socially. I was letting my body control me and yet somehow I kept pushing forward and now I absolutely love life and everything about it! Yes, as mentioned, you get bad days but they are getting fewer. I have met new friends and learned a lot about myself. One word to take from this is HOPE. Because that’s what you will need to drive you forward and what will see you on the road to acceptance Hold On Pain Ends. Just take one step at a time never look back look forward.

Do you have a story about living with psoriatic arthritis to share too?