I never thought I’d have a chronic illness.
Yet here I am, not even 35 years old, and I was diagnosed with Rheumatoid Arthritis.
In early 2016, I started having a lot of pain in my joints (mainly feet and hands), but there were times where it would go all the way to my elbows and knees. It was excruciating and at some points debilitating. Sheer exhaustion was another symptom, and as a mom of a young toddler, being tired isn’t something new. However, this “tired” was not normal. I felt bone weary – not able to keep my eyes open – exhaustion. My hair fell out in clumps, I had mouth ulcers all the time, and it was all I could do to get through the day. There were days, when I wasn’t sure I could get out of bed, let alone take care of Aeneas.
I went to my doctor, and had a ton of blood tests done. Checking for anything from thyroid, to iron deficiency, to Celiacs. I had high inflammation, and slightly low vitamin D. My doctor prescribed high dose vitamin D, and further blood tests to check on the inflammation. These test results showed my inflammation was even worse then the first time.
The Chronic Illness Duo – Which Do I have?
By this point, my doctor told me it was likely either
Fibromyalgia (n.) – a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas,
Rheumatoid Arthritis (n.) – a chronic progressive disease causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles.
Both of these are chronic illnesses that create a lifetime of pain and health problems. Neither was what I was hoping for, but I felt better knowing that I was close to a diagnosis.
At this point I was on NSAIDs to help with the inflammation and pain, and yet I wasn’t helping. After more inflammation tests to see how I was responding to the NSAIDs (not at all), my doctor finally put me on steroids (prednisone). I started feeling better! It was incredible to be able to go through an entire day without being in debilitating pain!
I started tapering off the steroids, hoping it had taken care of the inflammation, but the joint pain started creeping back in. It was a catch twenty-two, stay on steroids and not be in pain (and have rage and hunger 24/7), or stop taking the steroids, and be in pain 24/7, but stop gaining weight.
With this information, and the fact that I didn’t show hardly any of the localized tenderness areas Fibromyalgia usually has, my doctor finally diagnosed me with Rheumatoid Arthritis, and put in a referral for me to see a Rheumatologist.
Moving On – Daily Chronic Illness Management
It took almost a YEAR to get to this point. A YEAR of being in pain, not knowing what was wrong with me, and feeling guilt to my family because of my inability to do everything I used to be able to do.
Now I know that I have limitations. I can’t do everything that I used to do, the way that I used to do it. However, I can do the things that are important to me. I can play with my son, I can work, and I can have an amazing family.
In order to have less daily pain, I had to alter my lifestyle some. Prednisone is horrible, so I decided to taper off it and try other ways to reduce my inflammation.
The change that has made the most impact on my daily life has been cutting out all nightshades. What are nightshades you ask? They are a family of plats that include: Tomatoes, Potatoes, Eggplant & Peppers (not the seasoning black pepper though). Now, there is no scientific proof that cutting out nightshades lowers RA symptoms. However, I decided to eliminate them from my diet as some people I knew with RA told me it had helped them.
I completely eliminated them (and trust me, this is NOT easy) from my diet for two weeks, and then I tried putting them back in one at a time. I found that I can’t really tolerate any tomato or peppers in my diet, and trust me, coming from an Italian family, this was torture to find out. Yet potatoes don’t affect me as much, so I allow myself to have time every now and then.
Here are a couple of blogs that I looked at for recipes:
I try to get in at least 6-8hrs of sleep. Even if I don’t sleep the whole time, I try to go to bed no later then 10pm (I miss that mark some nights), and I usually read a book, or watch a show on my computer until I can fall asleep. The more time my body has asleep, or resting at night, the less pain I generally have the next day.
I have a goal of walking 10,000 steps every day, and trying to workout on top of that. This is the area I’m working on myself right now. Exercising daily – even if it’s just walking – helps not only your weight, but also sleeping and lowering inflammation. Just make sure you don’t over do it when working out. Doing too much can make an inflammation flare worse.
Where to Go for More Information
If you think you may have a chronic illness, or rheumatoid arthritis specifically, here are some websites to check out:
Know that you are not alone. Living with a chronic illness is a BIG pill to swallow, but you can still live a long fulfilling life.