RA from the Heart

Let’s Talk

I thought maybe we should talk. If you read about me, you already know part of my story, you know I have rheumatoid arthritis (RA). What does that really mean? It means I live in pain daily. My joints are swollen and stiff. Parts of my body are now deformed. There are things I cannot physically do anymore. However, I am not here to give you the “poor me” story. What I hope to do is tell you some things my doctors did not tell me. I hope in sharing my experience that you will find hope, encouragement, information, and support.

The Beginning

The best place to start is the beginning. Since RA (now often being referred to as RD or rheumatoid disease) symptoms overlap with other conditions, it is often misdiagnosed. Plus the sed rate test is often inaccurate and gives false negatives. That is what happened to me. I spent about two months in occupational therapy, massage, and ergonomic evaluation because I was falsely diagnosed as having carpal tunnel syndrome. When the hand specialist realized I had no intention of having surgery, he declared me “better” and released me.

Despite his declaration, unbearable pain had now spread throughout the joints in my body. Most days I needed help to get dressed, and then I would cry all the way to work, only to turn around and go back home because I literally could not function. At the urging of my aunt (who happens to be a nurse), I went back to my family doctor and asked her to run more tests for anything related to lupus. That is how they found the RA.

I remember when the doctor called me. She told me it was rheumatoid arthritis. I cried. I cried because I was thankful I wasn’t dying, and I cried because there is no cure. My doctor set up an appointment with a rheumatologist, and she helped me fill out the necessary forms to take a leave of absence from work through the FMLA Act.

The whole experience had left me depressed and exhausted.

So, my first piece of advice is you know your body better than any test or any doctor. If you are not getting better through whatever treatment you have been prescribed, get a new treatment, or get a new doctor.

 

Treatments

In the course of 17 years of war with my body, I have taken nine medications, tried several diets, tried several natural remedies, and acupuncture. Chances are, if you see a rheumatologist, you will be put on a TNF blocker (also called a biologic) and methotrexate (which is actually chemotherapy drug). TNF stands for tumor necrosis factor which is a small protein that helps cells communicate in immune responses to inflammation and infection.

I am not a doctor. I cannot give you a medical opinion about medications, but I can share my experiences. If a TNF blocker works for you, you will feel absolutely like a new person. Unfortunately, I tried three different biologics and my body does not respond to TNF blockers. The last rheumatologist I saw told me honestly that I should not waste my time on anymore medications that are TNF inhibitors.

My experience with methotrexate was so bad, I will never take it again, nor do I wish to ingest any other chemo drug in my lifetime. A second drug similar to methotrexate called Arava was prescribed. It has less physical side effects, but it also made a nice bald spot on the back of my head. As if I wasn’t depressed and losing self-esteem daily as it was, knowing I had a bare patch on the back of my head pretty much made me want to crawl into bed and never come out. Except, I had a daughter.

Thank God, I had a daughter. I had to show her that no matter how bad life sucks. You show up. You do your best whatever that might be. It might be getting dressed and sitting in a chair. It might be working four hours a day, coming home and taking a nap. Whatever your best is, you do it. You never give up. (My second tip.)

But, here, here is where I start to get irritated with doctors. My third tip: find a good multi-vitamin. Between your disease and your meds, your body is depleted. Prednisone zaps your calcium and your vitamin C. You probably have low levels of iron and vitamin E. No doctor ever told me this. I researched it on my own.

Next, stop eating sugar, and change the type of carbs you eat! I was not ingesting a lot of sugar, so I thought. I had one pop (soda) a day, a bowl of ice cream here or there, a few cookies. Nothing major. Now facing diabetes caused from the steroid, prednisone, I changed my diet and carb intake. The inflammation in my body decreased dramatically. Sugar causes inflammation. An average meal should only have around 60 carbs. You know those delicious little snack cakes we put in our kids’ lunches? They have on average 35-40 carbs! That’s almost a whole meal’s worth of carbohydrates! So that would be my fourth piece of advice: sugar is evil.

What Works for Pain?

I’d like to tell you that I have the ultimate answer for pain. Unfortunately, I don’t. Acupuncture is great, but usually not covered by insurance which means I cannot afford to go regularly.

Probably you have noticed that it is getting harder and harder to obtain pain medications due to the opiod issues. It seems to me that no one is concerned about those of us who have to live in chronic pain, but then that’s just my humble opinion. This has led me to search out some alternative solutions to pain.

Use the cold, hot, cold method. Ice pack, heating pad, ice pack for 15 min each. Alternating cold water and hot water also works (only as hot as you can stand it; Don’t burn yourself).

Some essential oils are great. I personally enjoy soaking my feet in Epsom salt and essential oils. I found blending a combination of oregano, peppermint and lemon great for massaging achy areas. Many essential oil producers have blends for pain as well.

I have tried other natural/herbal supplements without much benefit. My chiropractor had me try a product called InflamX which I did have some good results with.

I am now trying some CBD oil products. In fact, I found a pain cream I absolutely love. Just this week I started taking CBD in a capsule. It can take week or two to build up in your system, so I am not sure what results I will have yet.

I wear slippers a lot.

My thoughts on pain are that we all tolerate pain differently. We cannot be expected to all react to any treatment exactly the way someone else does. That is the main problem with Western Medicine. They treat the symptoms, not the individual. Find what works for you. Find a doctor that listens to you. This is your body and your journey. The doctor works for you.

My final piece of advice: YOU’RE WORTH IT! Ever notice how we’ll spend money on clothing, entertainment, etc? But, ask us to invest $50 in our health, and all of a sudden we’re broke. You, my friend, are worth it. You deserve to be healthy. You deserve to be happy.

Leave me a comment. I’m happy to share my experiences with you.