Found this on the South Wales Police Facebook page, of all places. Describes our illness so well…
#HumansOfSWP | 💬 "I suffer with rheumatoid arthritis (RA), which is an autoimmune and inflammatory disease. In basic terms it means my immune system attacks healthy cells in my body by mistake, causing painful swelling in the affected parts of the body. RA mainly attacks the joints, and usually many joints at once.
"I first stated experiencing symptoms at the age 46 but I put it down to many things: it was probably just my hormones and emotions going wild; I needed more coffee, exercise, or sleep; I needed to lose weight.
"When I was finally diagnosed a year later, after many tests, I found it difficult to accept and didn’t really understand the disease. Why couldn’t I push through the pain and fatigue? I thought, ‘it’s just arthritis’, ‘I’m too young for it to be anything serious’, and ‘I look perfectly fine’. But in reality, I was now living with an autoimmune disease and it was doing things inside me that I couldn’t ignore.
"I decided to fight my new enemy. I needed the help of a specialist, disease-modifying medications, and more information. One of the best ways to fight, after all, is through education. Educating myself, and educating those around me.
"After reading everything I could online, working with Versus Arthritis and squeezing as much knowledge from my doctor as I could, I began to feel comfortable trying to explain RA to my family and friends.
"I want people to understand that RA is an autoimmune disease and it is a chronic condition with no cure. A healthy immune system protects the body by fighting off foreign invaders such as viruses and bacteria. In an autoimmune disease, the immune system mistakes a person’s own tissues for foreign invaders. In the case of rheumatoid arthritis, it’s the synovium, which is the membrane that surrounds the joints.
"This puts into play an inflammatory process that causes RA’s tell-tale symptoms of swelling and pain which can lead to deformities and disabilities. Because RA is a systemic disease, this inflammation can also affect the entire body – the skin, eyes, lungs, heart, kidneys, salivary glands, nerve tissue, bone marrow, and blood vessels, to name a few.
"The symptoms are not just joint pain. Pain, swelling, fatigue, malaise, fever, cognitive dysfunction, memory issues, brain fog, weight loss/gain, and depression are common non-joint symptoms or side effects of having rheumatoid arthritis. We also have comorbidities to deal with – for example, heart or lung disease – which exacerbate our symptoms.
"Pain isn’t always the most persistent or bothersome symptom either. For me it is usually fatigue and brain fog which has affected my working life and I have had to go part time as a result. I also struggle with my weight as my mobility is affected.
"I want people to understand that rheumatoid arthritis is different from osteoarthritis. While there are many similarities between the two, they are quite different diseases. Osteoarthritis is the most common and well-known and involves loss of cartilage between joints due to age, wear and tear, or injury. It can cause significant pain and disability.
"I’m not trying to minimise it in any way, but OA is not an autoimmune disease, so the treatment and course of disease progression is quite different from that of RA. Even now when I try to explain my illness to someone I will often get the response 'Oh, my Nan has that' or 'Yeah, I think I’ve got that in my knee'. Unfortunately osteoarthritis is also a secondary arthritis suffered by RA patients. I have osteoarthritis in both knees and one hip joint and have recently had cortisone injections to help with the pain.
"Complex medications are involved. My doctor prescribed me methotrexate, which is a common and often first-line medication used to treat rheumatoid arthritis. Today’s RA medications don’t just treat pain and swelling. Disease-modifying antirheumatic drugs, or DMARDs, modify they immune system to help stop inflammation in its tracks. Before I was diagnosed with rheumatoid arthritis, I never knew chemotherapy could treat anything but cancer. But methotrexate was originally used as a type of chemotherapy.
"Then researchers discovered that — in much smaller doses — it could also be used to treat certain types of inflammatory arthritis. Methotrexate for RA doesn’t cause the same degree of side effects that it does in chemotherapy doses, but it still can have side effects, including nausea, GI issues, and hair thinning or loss. I had to get monthly liver tests and I could no longer drink alcohol while taking it.
"It’s a rare RA patient who doesn’t endure trial and error to find the right medication, or mix of medications, that works for them. I’ve gone through 11 different medications so far, which has included methotrexate, hydroxychloroquine, sulfasalazine, prednisolone, leflunomide and imraldi. I am now on a biologic medication called Humira which I have to inject into my stomach or thigh fortnightly. Biologic medications are a newer and more targeted category of disease-modifying drugs. I inject this and daily I take four anti-inflammatory tablets and one tablet to protect the stomach. I also have a Vitamin B12 injection every 12 weeks as I am anaemic which is another common comorbidity alongside RA.
"Rheumatoid arthritis, and some of the medications used for treating it, compromises the immune system, leading to more infections. Rheumatoid arthritis can increase your risk of hardened and blocked arteries, as well as inflammation of the sac that encloses your heart. Those with RA have an increased risk of inflammation and scarring of lung tissues. We are at an increased the risk of lymphoma, diabetes, heart disease, obesity, and lung disease. And that’s just the beginning of the list of comorbidities.
"Because I am classed as high risk and have a compromised immune system, to date I have had eight Covid vaccines, although I still caught Covid twice which has turned into pneumonia. I try not to think too much about the long-term consequences of having RA and basically just get on with it.
"I am classed as disabled and have a Blue Badge for my car. I can’t count how many times I have heard comments such as 'nothing wrong with her' and 'Gran’s badge'. I’ve even been shouted at by an elderly lady who, along with a few expletives, told me I shouldn’t be parked there as there was nothing wrong with me. The joys of having an invisible illness!
"All I want is to be treated with kindness and compassion. If I can help someone understand the limitations that go along with this disease, then I’ll have made a little difference. It’s not that we are flaky or forgetful, for example, but rather it’s an unfortunate side effect of our disease. Sometimes we just need a friend, sometimes we need physical or emotional help.
"A little bit of support can go a long way for us, in ways that medicine or health care professionals can’t help with. And luckily, I have a fantastic husband, family and friends who completely get it."
- Sam Spiteri, Station Enquiry Officer with #TeamSWP
Regarding mixed connective tissue disorders, crossover and autoimmunity in general..
A new name for RA
Is this a hoax?
