My autoimmune disease diagnosis

I went to the doctor on Monday, and was told that I have an autoimmune disease called Rheumatoid Arthritis. I am taking further steps to get blood work done to try and figure out for sure what is going on, and where to go from here.

My head is boggled with a ton of information (and questions) so I’m going to lay it all out here. Disclaimer is that I am not a doctor myself, I am still learning about what this means, there’s still plenty that I’m unsure of. But I’m going to speak strictly from personal experience and what I have heard or read about so far. Feel free to correct me with anything I’m wrong about, although I know that this is something that affects everyone differently.

Autoimmune disease

First, I want to talk about autoimmune diseases in general. Autoimmune is when your immune system attacks itself for seemingly no reason, mistaking its own cells for foreign cells. It’s like being an alien in your own body. There are a range of types, some beginning in childhood and some that do not manifest until elderly age. Although, personally I can see how a child could experience autoimmune symptoms but not be able to properly recognize it until early or late adulthood. It seems that there is no cure, except for managing it through medication, physical therapy, and/or diet change.

Someone with one autoimmune disease is far more likely to have other additional autoimmune diseases. So knowing I have Rheumatoid Arthritis, I believe it’s very likely I could be/have been suffering from one or more other types. I am taking steps forward to try and figure this out.

Rheumatoid Arthritis vs. Osteoarthritis

Now I’d like to distinguish the difference between Rheumatoid Arthritis and Osteoarthritis — Osteoarthritis is the result of ware and tear on the bones, common in the elderly, a direct response of physical trauma. However, Rheumatoid Arthritis is an autoimmune disorder and seems to happen “randomly” — not from any specific physical trauma — rather, essentially the body putting stress on otherwise healthy joints. Most people who hear “arthritis” think of Osteoarthritis, but it’s important not to confuse the two.

Rheumatoid Arthritis (RA) is specified by “random” swelling of the joints — usually hands/wrists, feet/ankles, knees, etc. It can be constant, but from what I gather, seems to come and go, affecting all different joints throughout the body. It goes beyond achiness — it can be stabbing pain that prevents you from sleeping, walking, performing everyday tasks.

My story

RA severely hit me a little over a year ago, when my knee randomly swelled up. It got to the point where I was limping around at work, and everyone was telling me to go to the doctor. I had just moved a few weeks prior, and was going through a lot of stress, so I tried to brush it off. I thought it was normal. One knee recovered, and then it hit the other knee, and then both were recovered about two weeks later.

A few months back, RA struck again in my wrist. At this point, it seemed a bit more random, because my life was fairly constant at that point with no physical trauma to relate it to. Again, I normalized the pain, and pushed through it. And then just last July, I had about two or three weeks of intense jaw pain, to the point where it hurt to speak and I couldn’t eat anything crunchy.

Last weekend, my right ankle began swelling for seemingly no reason. Again, I normalized it, took some pain medication. But by Monday, it was extremely excruciating, shooting pain. I was limping around all day (my job is very active and physical) and again, everyone was asking what was wrong, and urging me to see a doctor. I just kept normalizing it. Until I got home, saw how red and swollen it got, and immediately took myself to an urgent care.

I was truly dreading a doctor’s visit. I sat in the waiting room, anxiously imagining all of the worst-case scenarios. I wanted to cry. But I reminded myself that I was at the safest place, I was going to be seen by professionals who know best, everything was going to be okay.

Back to over a year ago when my knee flared up, I had been googling symptoms, and RA definitely seemed like a strong possibility. But I didn’t bring it up to the doctor, I was hoping she would just tell me it was something that would pass. However, after some examination, and taking an x-ray, she told me it looked like RA. And the more I research the symptoms, the more everything makes sense.

In retrospect…

Ten years ago, when I was about sixteen, I was convinced that something was off with my body. It was more related to digestive issues (also a form of autoimmune) but was affecting my entire body. I saw the doctor, got some blood work done, and couldn’t get any answers. I tested negative for Celiac disease, but didn’t go quite beyond that. It was frustrating and I basically just gave up, too young to really understand or verbalize what I was experiencing, also knowing basically nothing about autoimmune diseases. Looking back though, I do feel like it was related to some form of it.

And while RA may not manifest itself until early or later adulthood, I do feel that I experienced less severe symptoms, mainly around puberty and teenage years. I have read that autoimmune diseases typically present themselves during childbearing years. And again, I think we should consider the fact that children simply do not have enough experience to understand the difference between “normal” and “unwell.” They also cannot yet fully describe what’s going on with their bodies.

I’m remembering times when I was about ten or eleven, feeling achiness in my legs, and relating it to a symptom of breaking my leg when I was seven (even though I felt it in both legs… Logic? Also, it was always just one leg at a time.) It’s like, all of these childhood memories of talking with elderly people who suffer from some form of Arthritis, and relating to them. Looking back, I wonder how I didn’t make that connection any sooner.

“Normalizing” the pain

All of this achiness and joint soreness, I thought it was normal. Even in your elderly years, it’s not completely normal. And most certainly not in childhood or your twenties, or middle age either. When people asked what was wrong as they saw me limping, I was like, “you know when you wake up with random soreness?” Or “you know when you have random joint pain?” Just acting like it’s totally normal. And everyone is just like… “Uhhh… No?!“

I described the four most severe cases (or flare-ups) that I have experienced in the past year or so, but it goes beyond that. Those are just the few times it was at its absolute worst. Even now, with acute pain in my ankle, my whole body feels very achy and my left arm is feeling progressively worse. Joint pain is something I experience frequently, although there are better days and worse days. It really wasn’t until, basically, just now, that I realized the pain is not normal and should be acted upon.

I already have my next doctor’s appointment booked, and I’m taking proactive steps. It really is a lot to take in, which is why I needed to write about it. This is really only the beginning of the journey. I already have so much to think about and process.

And back to autoimmune disease…

Autoimmune disease is living with chronic pain, it means chronic lethargy, it can be an invisible illness that is masked by normalizing symptoms, that other people cannot see from the outside. It is not understood, not recognized enough. Awareness is so important.

Check on your health

Not just RA, or any autoimmune disease — when it comes to any area of your health that needs attention, please be proactive. Seek help and information.

I was avoiding the doctor at all costs, but the relief I feel now is a very good thing. I have many more doctor visits to follow, but taking that first step to ask what was wrong with me was truly the hardest part. To anyone who tries to ignore or “tough it out” with their health, whether physical or psychological, please seek a doctor!

Of course it’s upsetting news to hear. But at the same time, I also feel better in some ways. I feel empowered to know what’s going on with my body, and I feel validated to know that my pain is real, and I feel comforted to know that I am not alone.

Sources:

• https://www.webmd.com/rheumatoid-arthritis/rheumatoid-arthritis-basics
• https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648
• https://www.arthritis.org/diseases/rheumatoid-arthritis