Editor's Note: This article was originally written by patient expert Tiffany Westrich.
Ask someone with rheumatoid arthritis to tell you about their biggest frustration and chances are they'll mention the misconception that RA is like osteoarthritis (OA). To help you educate those around you, HealthCentral's RA community will be featuring a trio of posts with information and stories that can help others understand. We'd like to thank Tiffany Westrich, the CEO and cofounder of the International Autoimmune Arthritis Movement, who will be working with us on this project. You may also want to read Lene’s post on RA vs. OA: This Ain’t Your Grandfather’s Arthritis.
Think back to a time when you have taken a nasty tumble, or been victim to an accident. The immediate pain, while possibly intense, was likely exacerbated the next day as your body adjusted to the damage. Do you remember feeling ‘beat up' or telling others that ‘everything hurts'? Depending on the degree of injury, you may have developed a limp or relied on others to help you move about. Interested parties probably inquired what was wrong, so much so that you may have found yourself tired of reiterating the story over and over again. But after some time, your body healed and you went back to living your normal life.
Now recall the last time you had the flu. Your body was aching from head to toe, your muscles were weak, your fever was spiking and the nausea and fatigue was, at times, intolerable. Your appetite was likely non-existent, but in reality you knew you would not have the energy to cook a full meal anyway. You may have taken off a few days from work to recover, but in time you bounced back and resumed your daily life relatively unscathed.
And lastly, think about a situation when you experienced physical exhaustion. Perhaps you took part in some extreme exercise or briskly walked up a hill or just finished hanging all the holiday lights on a two-story house. After the task your muscles were weak, you may have been out of breath, and you physically could not do much more for the rest of the day. However, chances are after a few hours of rest or a good night sleep, you were refreshed and rejuvenated.
If you can relate to these situations, then you can begin to understand what it feels like to have Rheumatoid Arthritis (RA). While it does involve "arthritis", or joint pain, it's the "rheumatoid" that gives the disease its defining characteristics. Rheumatoid Arthritis is a systemic (full body), autoimmune disease that affects the joints, connective and soft tissues, and sometimes organs. Most patients will describe the symptoms as:
- Dealing with an Injury. It causes pain similar to a sprained or broken body part, and comparable to the physical trauma felt after an accident. At times the inflammation and soreness is so intense a brace or other movement assistance equipment is necessary to perform even simple tasks, similar to wearing a sling or cast after an injury. And like a person who has taken a bad tumble, they may or may not actually look injured other than a slight limp or other internal physical struggles, but it does not mean they aren't experiencing disability.
- Having the Flu. Rheumatoid Arthritis is an inflammatory disease, so the pain is brought on when the immune system goes haywire and begins attacking the bodies' own cells. This inflammation can cause frequent fevers, nausea, and obnoxious fatigue. Like the flu, loss of appetite and muscle weakness is common, but unlike the flu, it will come back monthly, weekly, or in some cases, daily.
- Feeling Exhausted. Rheumatoid Arthritis is systemic disease that can affect any part of the body, even organs. When the disease is active, or ‘flaring', a patient may experience bouts of complete exhaustion, similar to how the body reacts after intense, strenuous activity. They may also experience a sense of physical exertion and the feeling of being winded, yet this can occur without any physical activity what-so-ever, including at times of rest or even after waking in the morning after a full night of sleep.
But Rheumatoid Arthritis patients are not just affected by the physical disabilities, they also must deal with the mental struggles that accommodate a chronic illness. The disease is unpredictable, flaring at any time of the day or night without warning. Imagine if your flu continued to resurface every few days, indefinitely, or you woke up in the morning already feeling like you had just run a marathon? What if your injury never healed, and it began to spread to a dozen or more additional places in your body? With Rheumatoid Arthritis, every day becomes a constant manipulation of tasks, which can weigh heavily on both those who have the disease as well as those whose lives are affected because of it. Managing both the physical and emotional effects of RA can be taxing and frustrating, but if the patient finds a solid support system it can make a big difference in their ability to cope.
Unless you have Rheumatoid Arthritis, you can never know exactly what a patient endures, but perhaps now you can empathize a little more by relating your experiences to the most common characteristics of the disease. However, in order to truly understand, you must envision your injury, the flu, and the exhaustion all occurring at the same time. You must accept that your body would not heal in a few days, you would not be refreshed after a night of good sleep, and your ‘normal' would forever be compromised. But like all RA patients, in time you would learn to adjust. Having Rheumatoid Arthritis is not the end of the world it's just another way of living in it.
Tiffany is Founder & CEO of the International Autoimmune Arthritis Movement (IAAM) www.IAAMovement.org.
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