Lorelei has battled OA for years and was first diagnosed with RA in 2014 although she probably had it for some time before.
A Misunderstood Disease
Rheumatoid arthritis is a highly misunderstood disease—not by doctors, but by the general public. It is so misunderstood that most people who have it have dropped the term “arthritis” Instead, they call it rheumatoid disease (RD). The word arthritis does not cover what it is. As an auto-immune disease, it is more. At its worst, it attacks all your joints and organs, including your eyes. The only good thing about RD is when it goes into remission.
Yes, just like cancer, rheumatoid can go into remission. Unfortunately, it rarely stays away. Such returns are called flares, which, just like the disease, can range from minor to severe. For those who have a mild form, it can mean sore hands or ankles. This is what people are most familiar with, and they know little else about it. I suffer from severe RD when flaring.
My story is common among those with severe RD. I was enjoying life like anyone else. I already had some osteoarthritis (OA) in my knees and wrist, so I was no stranger to having some pain. One day, I did a few minutes of a new exercise that put pressure on my arms. When I awoke the next morning and went to brush my hair, I realized I could not lift my arms. I am not exaggerating; the pain was so severe, and they were so weak that I could not lift them the entire day. I assumed the exercise was dangerous.
A New Kind of Pain
As the weeks went by, I began to have weird pains in my ankles, knees, and shoulders. Nothing severe. Just stiff. Just a few weeks later, my life changed completely. Little by little, each joint in my body began to ache. It started in my shoulders. They felt tight, as if my arms were being stretched downward against my will. I had to be careful not to lift any kind of weight, or my arms would quit working.
Then my knees began to swell and throb. I knew it was not the usual pain of my OA, so I went to the doctor, who recommended I see a rheumatologist. I called several, but it took me weeks to get an appointment with anyone. I chose the doctor who could get me the shortest wait, which was two weeks.
In that time, it became increasingly difficult for me to do things. One night I got up to use the bathroom when my husband—who is an early riser—asked me to turn on the light because he was going to get ready for work. At that moment, I realized I could barely move my legs; I began to shuffle the five feet to the bathroom door and had probably gone about two when my husband reiterated the fact that he wanted the light on. Almost in tears, I cried out that I had not gotten there yet. I cried often, not because of the pain, but because I could no longer function.
Imagine the feeling of your arm trying to twist off or your body, or your foot trying to separate from your leg.
Almost all my joints were swollen and tender when I finally arrived at the rheumatologist’s office. I had already had blood tests, so when he saw me, he already knew I had a high RA count. He was convinced after the exam was over.
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He started me on a medicine called methotrexate and said I should also take a medicine called Humira. I refused. Shots? What would they do to me? He prescribed eight methotrexate pills once a week, and he said to come back in a month. The eight pills were making me very nauseous, so without asking, I switched to six pills. The pills worked as far as getting me walking again, but my joints were still trying to work their way apart. RD makes your body attack itself, and the first place it goes after is your joints.
Imagine the feeling of your arm trying to twist off or your body or your foot trying to separate from your leg. That’s what is happening, and it can cause horrible pain. I was considering that shot the doctor told me about, but I was too afraid of what it could do to me. Many of my friends also thought it was a bad idea. There are some very scary things out there about these drugs. All you had to do was listen to all the warnings on the TV ads, and you think twice about taking anything.
When Life Means Not Living
It became difficult to tend to bathroom needs or shower because my wrists could not handle the amount of pressure it took to accomplish such things. Climbing the stairs to my bedroom was a show. I would wrap my arms around the side rails and painfully pull—each step was torture. I only went upstairs once a day. I had to quit my job because it was too much for me. Just to get out of a chair, I had to rock and then throw my body forward. Walking was a mere shuffle. The more I walked the easier it got, but walking itself was so exhausting I could not do it for long. To brush my hair, I held my brush, lifted my arm slightly, put my elbow on the wall and lowered my body to push the arm up letting out little screams as I did so. Then I would hold my brush to my scalp and move my head.
Eight months later found me curled up in a chair with either heating pads or ice packs strewn across my body most of the time. I was determined to keep on going and I think I coped quite well considering. One morning at the top of the stairs. I looked down the first flight of steps to the landing. In my mind, it was as if I were descending a dangerous mountain. I stood and cried at the thought of it. That was the last straw.
It had come down to quality of life. I had gained 20 pounds from inactivity. I had quit having anyone over to my home; too much work. I no longer cared about the threats the shot imposed and I returned to the rheumatologist. They said it could take up to six weeks for the Humira to work, but I saw improvement in just two weeks and it only got better from there. I am technically in medical remission, although I have had a couple small flares in the two years since I started taking it. Although I would prefer not to have to take the shots, having my life back makes the risk worth it.
For More Information About Humira
People’s Pharmacy - Humira Side Effects, Complications, and Interactions
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Lorelei Nettles (author) from Mesa, AZ on September 14, 2018:
Patricia I am not a doctor. I would suggest you see one to be sure. There are rashes associated with RA however. Check out this website: https://www.healthline.com/health/rheumatoid-arthr...
Patricia Smith on September 13, 2018:
I have red spots on both legs. No we're else in my body. What do this mean