Lupus: Improving pain through exercise

Hello skygui13L, thank you for agreeing to share your story with us here on Carenity.

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

My name is Ingrid, I am 48 years old, I live in the north of France, in the Picardy region to be precise.

I have the joy of being the mother of three young girls aged 23, 20 and 18. I work for a local authority where I was a childcare assistant for about 20 years. I like to go for walks in the country, to go out, to spend quality time with my daughters and especially to take care of myself through exercise. I do some gymnastics and yoga every morning before starting my day.

When did lupus first appear in your life? Could you tell us about your first symptoms? How long did it take to get a diagnosis? How did you feel when you got the news?

I have had lupus for six years now. The symptoms started in 2011, I had a lot of pain in my joints and my doctor had prescribed me muscle relaxants because she thought it was from my work. I was always tired, I slept a lot only to wake up even more tired than before. I also had periods of depression so the doctor gave me anti-depressants. I also had periods of insomnia which were treated with sleeping pills to get to sleep. The doctor prescribed many tests without ever finding anything except anemia. I also had several X-rays of my body without any concrete answers.

My doctor, being a persistent person, was determined to find out what was wrong with me. So she sent me to a rheumatologist, who sent me for tests without being able to say what the disease was.

In 2015, following two very sudden deaths and a separation followed by a divorce, things really accelerated until one morning I couldn't get out of bed. My body was very sore, the doctor came to see me at home, and called a nurse to take some emergency blood samples. In the meantime, she gave me painkillers for the pain. 

Once she received the results, she contacted the hospital and I was admitted. After several days of tests, X-rays and scans, the doctors at the hospital told me that I had lupus but also rheumatoid arthritis. When I was told I had lupus, my doctor said she had suspected lupus but was not sure so she referred me to hospital. It took 4 years before I was sure about my two conditions.

When I was given my diagnosis, I collapsed, especially when they explained to me what lupus was, I thought I was going to die! I also thought about my children, I was angry at everyone and I locked myself up in my room for a year looking at the four walls without talking to my daughters. Even though I had explained the disease to them, I didn't talk about it with them. Then I started to read up on the internet to learn as much as possible about these two conditions.

What do you think about the care and follow-up you received for your lupus? Is there anything you would like to have changed or improved?

As far as the care of my condition is concerned, on the one hand it was very quick, my doctor immediately declared my conditions with the French public health service, but on the other hand, the doctors at the hospital did not all agree on the diagnosis. The rheumatologist said it was only rheumatoid arthritis and the internal medicine doctor said it was only lupus. In the end, they decided I had both! I was immediately offered treatment and a quarterly follow-up, which later became half-yearly.

I think that the detection of my conditions took too long, it could have caused more serious consequences if it had gone any longer. I would have liked the doctors to go into greater depth when patients like me complain of various ailments, to have them undergo more extensive tests. Four years is far too long!

Are you taking any medicines or under any treatment? If so, are they helping?

Today I am on plaquenil as a background treatment for lupus and rheumatoid arthritis, I take vitamin B12 because I have the beginnings of pernicious anemia, and I take iron for my chronic anemia.

During the past six years of illness I had a three year remission period and then for some reason I had a flare up during the first COVID-19 lockdown last year. Maybe it was due to the stress I was under. I even got cortisone for the first time. Today I am still taking the medicines I mentioned before.

Have you implemented any natural alternatives in your daily life to improve your health? What changes have you noticed?

Before my remission period, I changed my diet: I went organic, I eat a lot more vegetables, I cut out dairy and switched to plant-based milk, I also eat more dried fruit and I removed gluten from my diet. Finally, I have been experimenting with the benefits of intermittent fasting, and I have started to exercise again. These changes have brought real improvements in my joint pain, it's simple: I hardly have any! Where I saw the most change was in my stomach and digestion. And I have no more physical pain; it's really thanks to sport!

What impact have lupus and rheumatoid arthritis has on your daily life? Are there things you can no longer do or you keep yourself from doing?

The impact of my diagnoses on my daily life is very real, I had to stop working! I was declared unfit for my job, as I was working with children. It was impossible for me to lift the children without the risk of them falling, and really lifting children all day long became too tiring. From diagnosis to today, I've been on sick leave. My employer has not yet found a job for me. And I have applied to the local organization for workers with disability for an official disabled worker status and they granted me a handicap parking permit, because I can no longer walk long distances to the car or carry heavy loads.

Are you able to talk freely about your conditions with your friends and family? Do they understand your condition? Do you feel supported?

As far as my family and friends are concerned, I'm able to speak about my illness very openly to my family and my children. They all researched the disease and at first they were very worried. But as the years went by, they got used to it. Having been off sick for a long time, I did a lot of research and found that people are just not informed enough about lupus. So I decided to create an Instagram account (in French): ingrid_lupuslife, to which I will link to a YouTube channel very soon to talk about the disease. Several people in my life have been able to understand my illness: why I am so tired at times, etc., thanks to my Instagram. Today, I am well supported, but above all understood.

What advice would you like to give to other Carenity members living with lupus?

The advice I would give to Carenity members is to hold on, to fight to put the disease into remission but above all to keep your hopes and spirits up. Research is progressing and one day we will finally have a treatment that gives real results. I managed to put the disease into remission once, I'm still fighting to go back into remission, so don't lose hope, fight for your remission!

Any final words?

Thank you for giving me the opportunity to share my story on Carenity. It is a real privilege to be able to tell my story of living with lupus. I hope this story will help others and give courage to the patients signed up on Carenity. 

Many thanks to skygui13 for sharing her story with us on Carenity!

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