It’s just after midnight and I’m sitting with my laptop trying to work. No matter how I position my hands the pain creeps slowly up my fingers and into my wrists moving up my elbows if I stay in one position too long. I shift around, rotate my wrists and pop my fingers bringing maybe 10 minutes of relief. My fingers disobey me almost displaying a will of their own as I watch typo after typo appear on the screen. I wonder how I’m going to catch up with my work for school and for my internship after missing several days due to the pain. The pain scares me and it makes me angry. More often than not, when my hands start hurting I start getting irritated and find myself trying to push my body harder willing it to work the way it’s supposed to, but the truth is – at least for the time being – that is not going to happen.
While many people think of rheumatoid arthritis as something that only strikes people in mid-to-late life and with good reason given that the average age of diagnosis is around 60 years old , it can afflict people who are in their 20s, but that is not the norm. I’m 28 years old and I am one of the 2 million people in the United States living with rheumatoid arthritis.
Rheumatoid arthritis or RA is an autoimmune disease. Autoimmune diseases occur when the body’s immune system begins to see the body as an enemy and attack it the way it would normally attack a virus or some other foreign material in the body. In RA, the immune system attacks the tissue lining the joints and breaks it down over time causing among other things pain, swelling, and often a deforming – particularly in the hands – due to the wearing down of the joints.
RA is difficult to diagnose for many reasons. For one there are more than 100 different types of arthritis alone and if pain is the main symptom that a patient has, a doctor may not originally suspect RA. Additionally patients are frequently misdiagnosed with things like carpal tunnel or Lupus because they share similar symptoms, as was the case for me.
I began my battle with RA nearly six years ago just before my 23rd birthday. I was sitting at my desk at work late in the afternoon when the phone rang. It was a call from my doctor’s office that I’d been waiting for – the answer to why I was so exhausted, having constant migraines, and a number of other painful problems. I answered the phone.
“You tested very positive for lupus,” said the doctor.
I was silent for at least a minute before I could push “what?” from my lips. Since she was calling me at work, I’d automatically relaxed assuming it was nothing serious – doctors never give you serious news over the phone.
“I don’t actually think you have it, but I want to refer you to a rheumatologist. He can run some different tests to make sure. When can you come in?”
A short time later I was sitting in the doctor’s office with my mother, sitting on the exam table waiting for a new doctor to explain what was happening in my body. It was at the follow up appointment that I was given the diagnosis of rheumatoid arthritis, Hashimoto’s Thyroiditis, and symptoms of Sjogren’s syndrome. My mother and I sat and stared at the doctor.
Autoimmune diseases frequently come, at the very least, in pairs. In other words, my case is fairly typical in that my RA is accompanied by Sjorgren’s a disease which affects the glands in the body that produce moisture and Hashimoto’s an autoimmune disease that mimics hypothyroidism meaning that it slows the function of the thyroid causing among other things weight gain and fatigue.
Along with the diagnosis came MRIs, chest x-rays, blood work and other tests including one to measure my feet for orthotics – an insert that fits in the shoe and is supposed to reduce pain experienced when walking – the test involved walking on this special mat that was attached to the computer to take measurements. When the nurse entered my birth date into the computer, the program rejected it. She tried it again a couple of times.
“You’re too young,” the nurse said. “I’m going to enter your year of birth as 1971 instead of 1981 so the computer will accept it.”
There was something about knowing even a computer understood I should not be dealing with a disease like this at my age. I could feel the anger building up inside of me turning into hot tears that stung my eyes. But I didn’t say anything. I quickly bit back tears and followed her instructions as she told me to climb down off the table and walk on the mat. I’ve never been able to bring myself to wear the orthotics; it seems I would rather deal with the pain when it comes instead.
I began to come to terms with the fact that some of the things my grandmother struggled with – opening jars, picking up heavier objects, helping my mother with things around the house – were things I too had difficulty with.
I was put on six new medications including an immunosuppressant called Plaquenil. An immunosuppressant does exactly what it sounds like – it suppresses the immune system to slow down the attack on a patient’s body. Relafen for inflammation, Restasis for dry eyes, Singulair and Astelin to control my allergies, and Maxalt for migraines. These are only the medicines that helped – as with any illness there were a few trial and errors before we found the right ones. Unfortunately much of the medication also means I am less able to fight off normal illnesses making the patient more susceptible to colds and the flu. As a patient with what is now considered a “compromised immune system” I now fall in the category of people for whom flu shots are basically mandatory.
With my RA I experience “flares” in the disease, which means at times the symptoms will increase with no warning. I was completely unprepared for what a person experiences when a flare hits. The first one I had hit on a Saturday morning. I hadn’t been awake long. I was standing in the bathroom brushing my teeth when I suddenly became aware of pain spreading from my face over my whole body down to my feet. I had to call my mother to help me back to bed. I didn’t know what was happening, if I was having some sort of reaction to all of the new medications I was taking or if this was some other new way my body was attacking me.
The only thing I knew to do was to try to get warm, so my mother got some extra blankets and tucked them tightly around my body. She also got me some Advil to take for the pain. I think I cried until I fell asleep again. Although the pain was bad, my crying came more from the fear of not understanding what was happening. When I woke up several hours later there was still pain but I could tell it was centered in my joints. In fact my jaw, shoulders, elbows, hands, knees – nearly all of my joints were throbbing and burning with pain. I took the anti-inflammatory medication the doctor had prescribed along with more Advil and over the course of the weekend the pain lessened to a bearable extent.
Flares are common for people with RA, but at least in my experience, they do not happen too often. Flares can be triggered by stress, foods, or a number of other things. I had one last year that put me in bed for two days in extreme pain. The one I’m experiencing now is not as severe in the amount of pain, but is lasting much longer (over a week now) than any previous ones.
There are over 80 known autoimmune diseases affecting an estimated 23.5 million people in the United States. The number of women with an autoimmune disease is highly disproportionate to the number of men and varies by disease. For example, the number of women to men who suffer from RA is three to one. The National Institute of Allergy and Infectious Disease states that for currently “unknown reasons, the prevalence of autoimmune diseases is increasing.”
“At least 16 journals are showing that these numbers have doubled and tripled in the past years,” said journalist Donna Jackson Nakazawa. “There are genetics involved, but our genes are responsible for only about 30 percent of our risk of having one of these diseases, there’s something in that other 70 percent that’s changing to cause this doubling and tripling.”
In her book, The Autoimmune Epidemic, Nakazawa writes about how environmental triggers play a role in the rapidly increasing number of autoimmune diseases in people across the country and how people can be more aware and work toward strengthening their immune system.
One thing the doctors do not warn you about is the emotional toll that comes with the diagnosis. During the initial testing and diagnosis process I would cry as I drove to work every morning and then collect myself before going into the office. My family and friends are very supportive, but everyone had a lot going on right then and it wasn’t as though anyone could fix what I was going through, so I felt like I should just deal. Once I was diagnosed, I felt like I should just be thankful that I knew what was wrong and had medicine to take for it.
RA does affect every aspect of your life once you are diagnosed and there is no way around that. I began to realize this gradually after I started taking the medicines and could see what symptoms were going to get better and which ones stayed around. Fatigue can be a big issue – there are days when I wake up and it’s a struggle just to get up and moving because all I want to do is sleep. Some mornings the alarm sounds, I smack the snooze button and just lay there. Sometimes the sense of tired I feel is almost painful in itself, like the way it feels if you’ve just started to drift into a deep sleep and some loud noise forces you from rest. Think of the kind of tired that comes when you get the flu – that’s the level of fatigue and aches that I have often on a normal day.
“I think you have to first know that you have a real disease and be comfortable in yourself that this is something that’s real, that you’re going to take serious. And that listening to your body and resting when you need to is something that you have to do – that you’re not being lazy, that you’re not being a weakling, that this is a real disease and you have it and you have to respect it or your body is not going to do well. The first thing a person has to do is realize that for themselves. The patient has to understand that,” said Dr. Christina Charles-Schoeman, a rheumatologist at UCLA’s Department of Medicine – Rheumatology and Arthritis.
Dr. Charles-Schoeman dressed in gray slacks and a gray and white sweater, her blond hair pulled back in a loose ponytail sits in her office during her break. The office is small with a desk, a bookcase, and softly lit by lamps which she says is because the main light in her office burned out. Dr. Charles-Schoeman says there are some important things for people who have been diagnosed with RA to realize.
I was working at the time when I was diagnosed and I had no idea how to explain to my boss that I could wake up extreme pain without warning. In the minds of people not acquainted with a chronic condition like RA, pain does not just show up in the body at will – it either comes from injury or some normal illness such as the flu.
I was sitting in class the other day trying to focus on the lecture, but all I could think about was how cold the room was and how because of the cold, this deep ache was settling into my hands. I decide to try something that used to help me when I worked in a cold office. I went to the bathroom and ran my hands under the hottest water I could stand. Cold rooms, buttons, and writing anything by hand are among my lists of enemies when dealing with the illness. Buttons are a particular problem for me. Depending on the size of a button and depending on how much pain I’m dealing with on a particular day, I usually manage jeans, but shirt buttons often leave me frustrated. Pain from the RA makes many normal activities like driving a car, preparing food, or doing work for class almost impossible at times.
Remission. Remission is a word that makes me hold my breath, something that to me is such a fragile possibility it could disappear with a simple exhale. But remission does happen for some patients with RA. These periods can last from a matter of weeks to years at a time. For many women who have RA, their symptoms will disappear entirely when they are pregnant, a good thing since most of the medication used to treat RA cannot be taken while pregnant. Women by far have a higher rate of RA than men. According to a study conducted by the Mayo Clinic, the number of women with RA rose by 50 percent from 1995 to 2004, while the number of men with the disease was nearly unchanged .
On the flip side, the body can stop responding to medicines properly without warning. Like any other drug, after a certain period of time, the body can become used to the drug’s presence and it will cease to provide the relief it once did. I am beginning to suspect that I might need an adjustment in my own medication. I sat alone in my apartment Sunday morning in tears considering the implications of needing new medication only six years into this illness. At 28, filling my body with an increasingly stronger stream of medications each with their own set of side effects is not comforting regardless of the amount of help they provide.
“Physical therapy and things like that is one aspect, the non-conventional, non-Western medicine like acupuncture and all these different modalities that are available,” said Dr. Charles-Shoeman. “UCLA has an East – West medical group where I have sent patients for acupuncture and ya know there are support groups and a whole bunch of other things for patients with RA. The East-West medical group does acupuncture and has a lot of discussion about diet and what people are eating. Certainly some of my patients feel if they stick to a very strict diet, their RA is a little better.”
Whether the cause is environmental, genetic, hormonal, or some combination scientists do hope to develop more effective treatments and one day even a cure for the initial problem in the immune system that causes it to go awry.
I do not know what the future holds for me – where I’ll work when I’m finished with grad school, but I know I have to figure out a plan so that I have health insurance because not having it is not an option for me. I also have to make enough money to be able to afford the doctor visits, tests, and medication that are a regular part of life with RA. I have many of my own hopes and goals for the future, but I take it a day at a time. One of the things I look the most forward to in life is having children, but with the RA there are many complications. In theory, a person with RA can definitely have children with very little problem. However there are medications that can cause major complications if a woman becomes pregnant while taking them. Also as a patient, it’s my job to do everything I can to keep my body strong so that I can pick up my kids and play with them one day. And of course my ultimate fear is passing on the hiccup in my immune system that makes it mistake my body for an enemy. As much as the idea of one simple “fix” appeals to me, my biggest hope is that they are able to identify autoimmune diseases earlier and maybe have a cure by the time I have children.