Why people with Rheumatoid Arthritis can still exercise and why it is important.

Someone send me an Irish Times article recently called “Why exercise is so difficult for people with rheumatoid arthritis” The article was extremely misleading. It was referring to studies carried out on people with Rheumatoid Arthritis.

Allegedly the studies found out: “In a groundbreaking new experiment involving older women and exercise, researchers found that even a gentle session of leg lifts set off an exaggerated nervous system reaction in those with rheumatoid arthritis. Light exercise also negatively affected the inner workings of their muscles and blood vessels”

In the text it already alludes to ‘older women’ not all Rheumatoid Arthritis patients, not even all female Rheumatoid Arthritis patients. The unset of negative effects could also have been brought on by other age related conditions.

The study the article referring to is titled: Increased sympathetic and haemodynamic responses to exercise and muscle metaboreflex activation in post-menopausal women with rheumatoid arthritis”

The titled and the clearly refers to post-menopausal women with Rheumatoid Arthritis ,not men, juveniles or even pre-menopausal women.

But the Irish Times article brushes all Rheumatoid Arthritis patients with the same brush.

The article also fails to mention what can be construed as exercise, it really should be called physical activity. It only highlights the negatives where the positives of physical activities outweigh the negatives.

Physical activities can include exercises like swimming, aqua-aerobics, cycling, walking or any light exercise. Not only is good in a physical way, it is also works wonders for the mental health.

Exercise also works as a distraction for the pain caused by Rheumatoid Arthritis. Pre Covid 19 I went to gym at least 3 times a week. I found the pain or soreness caused by the exercises were easier to deal with then the pain caused by Rheumatoid Arthritis. That is how dealt with it, but that doesn’t mean that it works for others. There are different levels of Rheumatoid Arthritis and the treatments vary from patient to patient

Physical activities can also include a bit of gardening, some light housework, dancing even singing. All these things help to ease the pain or to distract from it. Even sex can help with the pain and is also a physical activity.

Stanford University, California USA have developed a program which helps people with Rheumatoid Arthritis and other Chronic conditions to live well. It is called “Living A Healthy Life with Chronic Conditions” The program is rolled out in Ireland by Arthritis Ireland as ‘Living Well with Arthritis’ for people suffering with all variations of Arthritis and related conditions.

The HSE, also provides the program for other Chronic conditions, as well as Arthritis.

The living well program is a very important tool for anyone with Arthritis to cope with the daily life. Not elements of the program will apply to everyone, but some elements will.

I am in the fortunate position to be a course leader, but I also took part as a participant. When I saw the Irish Times article I was very annoyed because it will turn a lot of people of exercising or doing physical activities and that really is the last thing they need. Rheumatoid Arthritis patients need to stay physically active, It doesn’t mean they have to run a marathon every day, but simple activities ,even exercised that can be done sitting on a chair.

Of course you need to consult with your medical team to see what works best for you. Misinterpreted data as in the Irish Time article will do more harm then good and makes it harder for people who are on the frontline helping people with Rheumatoid Arthritis , to convince patients how important physical activity and exercising is.

It is not only important for your physical health but also for your mental health. It is one of the distractions to help you cope with the pain and the fatigue.

I am sure the author of the Irish Times article meant well, but when you omit some vital information, and take it out of context, it completely changes the narrative.

Sources

https://www.irishtimes.com/life-and-style/health-family/fitness/why-exercise-is-so-difficult-for-people-with-rheumatoid-arthritis-1.4570390

https://pubmed.ncbi.nlm.nih.gov/33180998/

https://www.mountsinai.org/health-library/diseases-conditions/rheumatoid-arthritis

https://www.arthritisireland.ie/

My war against Rheumatoid Arthritis.

In April 2017 I was diagnosed with Rheumatoid Arthritis. It happened only days after my mother in law passed away, and at the same time my sister had a stroke. I was also still recovering from an eye operation, so as you can understand it wasn’t a great time for me.

I had a choice though, would I sit down and be a victim or would I just get up and fight? I chose for the second option even though I knew it was a fight I wasn’t really going to win, at least not in the short term.

But before I continue let me first give a brief explanation what Rheumatoid Arthritis is.

Rheumatoid arthritis is a condition that causes pain and swelling in the joints. Hands, feet and wrists are commonly affected, but it can also damage other parts of the body. Rheumatoid arthritis can make your joints feel stiff and can leave you feeling generally unwell and tired. It is most common between the ages of 40 and 70, but it can affect people of any age, and occurs more frequently in women than men.

What causes it?

The exact cause of rheumatoid arthritis is unknown. It is not clear what triggers the initial attack. Some theories suggest that an infection or a virus may trigger rheumatoid arthritis, but none of these theories has been proven. In my case I believe it was caused by trauma, because prior to the aforementioned traumatic events I also had to deal with the death of my brother in law which happened only 6 months, prior to that. The death of my father in 2015 and the fact that I had already lost one eye in 2011, and was facing a potential loss of the other eye(luckily that didn’t happen) so I think the accumulation of all these things triggered the unset of my Rheumatoid Arthritis, but that is only based on my presumptions not on science.

Rheumatoid Arthritis is an autoimmune disease. This is when your immune system, which usually fights infection, attacks the cells that line your joints, making them swollen, stiff and painful. Over time, this can damage the joint itself, the cartilage and nearby bone. Basically an autoimmune disease is when the body’s natural defense system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells.

So what does this all mean to me?

To me it means that I am in pain every day of my life. Does this mean my life isn’t worth living? Of course it doesn’t because despite the pain I still consider myself lucky. I am still alive and the pain reminds me of that. Furthermore I still live a reasonable normal life. Luckily I was diagnosed in the early stages of the disease, and the Rheumatologist was able to come up with a treatment which would halt or significantly slow down the progression of the disease. Prior to his consultation the Medical Assessment Unit on St. John’s hospital had put me on a high dose of prednisolone steroids tablets to ease the pain. I was in severe pain, I couldn’t move my arms and my left knee felt like it was shot and someone was constantly poking it with a knife(this is no exaggeration). When the Rheumatologist assessed me he told me that I needed to get of the steroids, because they were masking the symptoms. In order for him to set a correct diagnosis I had to suffer a bit more. When he eventually confirmed it was Rheumatoid Arthritis he put me on a cocktail of medicines.

  1. Methotrexate (MTX), formerly known as amethopterin, which is a chemotherapy agent and immune-system suppressant. They are small yellow pills. Which I take once a week
  2. Humira: Humira belongs to a class of biologic medicines known as TNF( tumor necrosis factor) blockers. It specifically binds to TNF and blocks it from acting within the body. It is an injection which I take every fortnight.

In order to reduce the need for additional pain killers , I decided to follow a course called Living Well with Arthritis and Related Conditions, which was designed by Stanford University ,California USA. The course was brought to my attention by course leader/tutor who also happened to be a cousin of my wife.

The course ran over 6 weeks and focuses on self managing the condition by a variety of tools like, physical activity, making action plans, distraction.

Although I was already doing a lot of the things covered by the course. I still found it very beneficial. One of the main benefits for me was that the fact I was there with people who were in the same situation as I was.

There was no need explaining how I felt, they just knew. One of the frustrating things for anyone living with a chronic diseases is that their family and friends don’t understand what that means, they just couldn’t understand, I look externally like a fit and healthy man.

The course benefitted me so much that I now have become a course leader/tutor myself and not only for Arthritis but also for other chronic diseases.

There is no cure for Rheumatoid Arthritis as of yet, and we don’t even know if there ever will be one. But that shouldn’t scare us, we just have to deal with the illness as good as we can , working together with healthcare providers and organisations who deal with Arthritis. For me that is Arthritis Ireland.

As I stated in the title that is a war, it truly is. Sometimes you fight battles on a battlefield other times it is like conducting guerilla warfare, My weapons are the medicines, the living will tools and constantly educating myself. Not listening to those who sometimes have bizarre conspiracies about the treatment and try to convince people about unproven alternative treatments. They are akin to the collaborators of the enemy, in my case Rheumatoid Arthritis.

Sometimes people think that it is unfair they contracted Rheumatoid Arthritis, and maybe that is true, but life isn’t always fair not isn’t it always meant to be easy. It was meant to be challenging and that is what makes it interesting. There is nothing more boring then traveling over a smooth surface all the time, you need the off obstacle.

The Covid 19 pandemic has not made things easier but it has created a few opportunities which weren’t there before. The aforementioned living well courses are now available on line, so you can do them from the comfort of your own home.

My latest battle is the Covid 19 vaccination, which I will get in the next few days, but this means I have to stop taking my medication 2 weeks prior and 2 weeks after the vaccination, which does cause me a little bit more discomfort. However in the greater scheme of things it is a sacrifice I gladly make.

Living with Rheumatoid Arthritis is a war but at the moment I am winning.

From April 12 to April 18 it is the National Arthritis week in Ireland. Please support the organisations who deal with Arthritis wherever you are. The research is not cheap. The science has come a far way, until recently Rheumatoid Arthritis was a severely crippling disease.

I am not asking you for donations here . I just want to raise awareness. Having that said, donations are always welcome.

sources

https://www.arthritisireland.ie/Pages/Events/Category/national-arthritis-week-events-2021

https://www.arthritisireland.ie/living-well-with-arthritis

https://www.hse.ie/eng/health/az/r/rheumatoid-arthritis/symptoms-of-rheumatoid-arthritis.html

https://www.medicines.org.uk/emc/medicine/31860

Milda Sykora- Researcher and scientist.

mlada

The picture above is a baby picture of Milda Sykora. A brilliant scientist and researcher. At a young age she had set herself the task to find out what triggered the unset of Rheumatoid Arthritis. She had seen several people in her family suffer what the disease for which there is no cure.

Tirelessly she worked to find a cure or at least something that could lead to a cure, to ensure no one else had to suffer with this sometimes crippling disease.

She had dedicated her whole life to this task. And her work paid off, last week November 2, 2019 Milda Sykora, aged 80 and a team of young scientists at Tel Aviv University had a breakthrough they finally discovered what triggered Rheumatoid Arthritis and several other auto immune diseases.

Unfortunately nothing of the text above is true, the only thing that is correct is the name Milda Sykora and it is her baby picture. But Milda Sykora did not even live to see her 3rd birthday, she was brutally murdered on July 25, 1942 in Chełmno, 3 days before her 3rd birthday.

If we are not angry about the fact that this twisted ideology , devised by a failed Austrian artist and his delusional friends ,murdered an innocent child , we should be angry about the fact that this child was not allowed to grow up and become that brilliant scientist.

The reason why I chose Rheumatoid Arthritis is because it is a diseases that affects me. And it makes me angry that in those millions murdered for no reason whatsoever , at least one of them could have potentially found a cure.

I could have taken so many other diseases or ailments , and we probably all know someone who suffers with a condition for which there is no cure . Just imagine all the brilliant minds that were wiped out. Minds how would have contributed so much.

If you ever need a reason why remembering the Holocaust is still relevant today, this is it. God knows how far we were set back in the world of medicines just because some evil twisted sick minds thought they were superior, well in this so called ‘superiority’ they possible also destroyed a chance of a cure for people they loved.

Any life taken during the Holocaust can be potentially  multiplied by a great number of others who dies a horrible death caused by a disease which could have been cured by someone who dies in the Holocaust.