Rheumatoid arthritis is a chronic disease affecting more than 1.3 million Americans. That makes it one of the most common autoimmune disorders -- more common than psoriasis, Crohn's disease, multiple sclerosis and lupus.
One of our staff members, Kayla, shares her experience with rheumatoid arthritis, and how she helps manage it with natural wellness options.
Tell us more about your experience with rheumatoid arthritis (RA). When did you discover you had it and what is daily life like with RA?
I was diagnosed with rheumatoid arthritis when I was four years old. I was taking a gymnastics class and had trouble doing a cartwheel toward the right. I could do a perfect cartwheel toward the left, so naturally my parents figured something was wrong. Shortly after, I was taken to Shriners Children’s Hospital Los Angeles where I spent what felt like an eternity (it was really just one very long night) undergoing way too many needle sticks and assessments.
The rest is history.
There are some things I remember as slightly abnormal about my childhood; for instance, I woke up limping every morning and had to take naproxen in liquid form. I remember that it tasted pretty nasty and I remember that my mom would always ask me if my body hurt when I woke up. I also remember not really knowing what “pain” that everyone asked me about was because it was my normal. In high school, I was a varsity cheerleader and pretty active.
I do not remember my RA even being a factor most of my teenage years. I now look back at those times as a possible stage of remission. I remember thinking that RA was like having a hangnail, or a pimple; it’s annoying when you notice it or focus on it, but it is not a big deal and it will not last forever. That was pretty naive.
When my sister turned 14 she, too, was diagnosed with RA, as well. It’s worth mentioning that not one other soul in our entire lineage ever had RA, so you can imagine the shock my parents felt when they found out they were two-for-two. My sister’s battle with RA is her own, so I won’t go too much into that, but her diagnosis is significant to my story for a few reasons. When she was diagnosed, my rheumatologist (and now hers) began treating us like some sort of science experiment. I get it; it’s a medical anomaly in the world of RA and autoimmune disease, for two sisters to develop the same chronic illness when it was never noted in our family history. This was mentally exhausting for both of us, but played a big role in what I view as a turning point in my journey with RA.
Prior to my sister’s diagnosis I never took any medication for RA except the occasional Aleve. The rheumatologist we were seeing wanted to put us both on biological (injections) drugs. I was told I had a very high SED rate and was NOT controlling my RA adequately, regardless of the fact I had just finished 4 years as a pretty competent athlete and felt fine the majority of the time.
Starting biologics was the worst thing I could have done. If I could go back I would have walked out of that doctor's office and never looked back. It began with HUMAIRA (a popular RA drug), and what followed was several months of “feeling healed” followed by an adverse reaction or no change in pain/mobility at all. This was my life for the next 5 years. I saw 5+ different rheumatologists and was prescribed 20+ different drugs; nothing worked, nothing changed, and the pain was getting increasingly worse. One rheumatologist even told me, “You are my only failure."
This is a good time to point out that physical pain hurts, but emotional pain is crippling, and that is how I began to feel: crippled by my mind. RA is a lot more than morning stiffness and medication. There is a huge part of RA that is mental. People who struggle with a severe case of RA, like I do, have to give themselves a pep talk for everything, which is the hardest part of RA...And I mean EVERYTHING: getting out of bed, cooking a meal, waking up, sitting down, standing up, having a social life, going to work, the list is endless.
I think there is healing in understanding. I like to share my story because I like people to know. It’s not a particularly positive tale to tell, but for me, there is redemption in the moments where people get it and for a second in time, we are one in the same because my life is really not all that different than anyone else. My battle is different, but we all have battles to fight.
What treatments and therapies have helped you with feeling your best?
Sadly, medication has failed me, in a big way, so I have decided to try alternative paths.
I have yet to find anything that makes me feel a lot better 100 percent of the time besides pain killers, and unfortunately only the serious ones work. Aleve and naproxen no longer have an effect on my so I have to take Tramadol and norcos (like hydrocodone). Obviously, this is not a long-term solution and not great for my organs. I have found things that help, though.
I am a big proponent of essential oils. Peppermint is my favorite. I put a drop or two on the joints in pain and it numbs them very quickly. Peppermint has gotten me through many tough days. Eucalyptus is also great!
I found that eating minimal sugar, gluten, and dairy and drinking copious amounts of water does my body good.
I believe alkaline water is magical and great for autoimmune diseases of any kind (St. Louis: you can try alkaline water at Radiance Float + Wellness!). Since working at Radiance, I have also recently tried cryotherapy and float therapy here in St. Louis, both of which have really helped with pain and tension for a day, sometimes two.
What advice would you give to someone just finding out they have RA?
I would say it is important to do your own research and be sensitive to your body and its limits.
Anyone with any autoimmune disease is doing themselves an injustice to rely solely on Western medicine.
More so than anyone else (although I think it is also important for people who are healthy), people with RA should look into what helps them feel better: diet, natural remedies, therapeutic services, pain-relieving exercises, etc. I would also say to remember that RA makes you a stronger person!
There are a lot of negatives to having a chronic illness, but being tough is our strength.
What suggestions has your rheumatologist given you that you employ in your lifestyle?
Because my situation and reaction to drugs is a little different, my current rheumatologist and I are still trying to decide the next best path for me.
Lifestyle-wise, I would say I have noticed specialists are very careful about suggesting alternative paths to healing. It's important to do some research for yourself, especially when it comes to natural remedies, and be proactive in talking to your doctor about those ideas!
Have a question for Kayla? Email us at email@example.com.