“Only now do I realize how sick I was”

“Only now do I realize how sick I was”

Seven months ago, Sanna Almqvist noticed her first rheumatism symptoms. In this blog post, she describes the journey towards an effective treatment and the paths she has chosen to feel better.

Guest Blogger: Sanna Almqvist

One morning in January, I woke up, put my feet on the floor, and realized something had changed. My feet were swollen and tender under the pads and I could not walk barefoot. After a few days, I noticed my wrists were swollen. These were the first signs of my rheumatic disease.

My name is Sanna and I will soon be 40 years old, I am married and have two children aged 11 and 13. We live in a villa with our three cats, who help us to stop and relax a little from the everyday routine. I commute to work and work as a quality manager in a municipality; it’s a job that involves a lot of responsibility and some freedom. We also have a mountain cabin that we are renovating and go to enjoy a little outdoor life. I am basically an active person with a lot of energy and drive. I have always spent time in nature and practiced a lot of yoga.

How it started

At first, I thought the swelling in my wrists and feet was due to the fact that I had been doing yoga every day for a couple of weeks. It was not until a friend (a rheumatologist) said that I "should check that out", that I suspected that it could be something more than just overexertion. I would probably have just ignored it for a while otherwise. I had only just started to start training again after a herniated disc. At the same time, I had a lot on at work, so it didn’t feel strange if my body said no. When I went to the medical center, I was sure they would think the same thing. In part, they probably did, but above all, the doctor started an investigation to rule out rheumatism.

I had to wait five months, until May 2019 to see a rheumatologist. Meanwhile, the troubles escalated. I was in pain, stiff and hot and swollen in my feet, ankles, wrists, fingers and knees. I also had pain in my shoulders, elbows and hips. I couldn’t put on my shoes because my feet were so swollen. I could not walk up stairs or even more than 400 meters without my knees getting worse. I was so stiff that I could not open and close my hands, when it was at its worst this pain lasted all day. My ankles were so stiff that I could not lie on my stomach. In the morning I could not lift my arms at all, and at night I had difficulty lying on my side. In the end, I could not dress, brush my teeth, cut food or open the film milk. The swelling in my wrists also caused me to get carpal tunnel syndrome, which made my fingers numb. At night it was even worse and sometimes I could not even lie down, because then it felt like my hands were burning. I just sat and watched TV. I was tired and very limited. In March, I was taken off sick. Throughout the period January-May, I took anti-inflammatory medication every day.

The road to diagnosis

The doctor saw my swelling and felt the heat in my joints. He thought it was strange that it had come on so suddenly, but he promised would get help. He pulled fluid out of my knees and gave me a cortisone injection in each. It helped my whole body and I immediately felt much better. Then I had to come back after a few weeks to examine the joints by ultrasound. I had some swelling left and they told me that meant it was a rheumatic disease.

I have so far only been diagnosed with inflammatory polyarthritis, which means I have inflammation in more than four joints. I do not have any visible damage to my bones yet. So the doctor does not know if my inflammations are erosive - if they are destroying the joints. The main thing for me is that I have been told that it is a rheumatic disease and that they are there for me. So now it does not feel as bad even if I feel worse. Today, in August 2019, ie seven months after that morning when I felt the first symptoms, nothing has shown up on a single blood test. I do not have the typical markers for rheumatoid arthritis or similar diagnoses. The doctor at the health center was clear that it could possibly take longer before I get the right treatment.

Better during summer

Throughout the spring, I felt both paralyzed and obstructed: I could neither do what I saw was necessary nor what I wanted. During the summer, I have been able to do a little more of both. Then I started taking arcoxia and was on part-time sick leave and holiday days. I have been active but have not had to do any of the things that make my symptoms worse. Driving and working with the computer is both difficult, and stress is never good. After I got the injections in my knee, I was able to walk, even though one knee swelled up after a long flight.

In August, I started working full time. Since I still have some problems I have new medicine: I’m taking cortisone tablets and have started with methotrexate. Since I started working full time, I have had more problems, including a little pain and hot joints. I also feel tired, my eyes are dry and I have to rest regularly. I think back to how it was last spring and only now do I realize how bad I was back then. At the same time, I need to accept that I'm still not a hundred years old, I need to find ways to keep up.

My ways to feel better

  • Physiotherapy, so that I get support with exercises and level of intensity

  • Mindfulness breaks on the train, at work and at home

  • Walks, to the train and in the woods

  • Yoga, what I can do and need

  • Plan my work day according to my needs

  • Be open about how I feel right now

  • Listen to myself so I know what I can and cannot do

  • Wrist protection when I use my hands

  • Log my activity and mood in Elsa

  • Let others do things and help me. I do not have to do everything.

Log in the Elsa app every day

I have used Elsa since May but since I felt better during the summer I did not log so much. Now I have started with new medicine, it feels important to keep track of how I feel, so now I log in pretty much every day. It helps me reflect on the day, make comparisons and understand when something is getting worse or better. I get a lot of thoughts about what I need. I participate as much as I can in the development of Elsa, for example, I wish we could add photos and see the difference in how strenuous our exercise has been. I like to go into the analysis and wish I could see several months at the same time.