As I have blogged in the past Rheumatoid Arthritis is a misunderstood Auto-Immune Disease in large part due to it's name. Most people hear arthritis and assume that it is the same as the touch of arthritis they have in their (insert body part) that comes with a lifetime of use or overuse. This couldn't be farther from the truth. People look at me with wide eyes when I ask if their "arthritis" is treated with Chemotherapy and Antimalarial drugs? Does your arthritis have a high mortality rate? This shocking approach usually grabs their attention enough that they are now interested in hearing what I have to say and an opportunity for RA Awareness and Education is before me. I appreciate any opportunity to help others to try to understand. Support Groups, Forums, Blogs etc. are full of people wishing for more understanding and less judging. While only people who experience RA for themselves will truly understand what it is like to live with it on a daily basis it is important that others try to understand as much as they are capable of. This is so important when it comes to family, friends and caregivers. People who have RA want and need to be heard, understood and most of all to not be judged.
- Is an Auto-Immune Disease that causes chronic inflammation of the joints and in severe cases organs. Essentially in Auto-Immune Diseases your immune system attacks healthy cells. It is a systemic disease and affects the entire body.
- Chronic pain. The pain is constant and has been described as an ache, sharp stabbing pains, radiating pain and burning pain. I am sure there are even more ways to describe this pain than I have covered. All in all the pain is difficult to describe and more difficult manage. Needless to say this type of pain can be debilitating. I have gone 11 months and not had one pain free day and have been told in most cases I can expect that I will never see a pain free day again. I cannot tell you what living with chronic pain is like. It is something that you can never understand unless you are unlucky enough to live with it. Pain is sometimes treated by your Rheumatologist but more often is treated by your family doctor (primary care physician) or through a pain clinic. In my case we have tried many different forms of pain relief and the only medication to this point that helps to take the edge off the pain is oxycodone which is a narcotic. I have come to realize that regardless of how you manage your pain, the best you can hope for is to take the edge off so that you can put it on the back burner so that you can function. In months before I found oxycodone the pain was so intense that I could do nothing and think of nothing other than that all consuming pain. I hope this is something that you never have to experience.
- Inflammation is a hallmark symptom of RA. It causes swollen, painful, hot, red joints. Not everybody experiences the same kind of swelling or to the same degree. This can confuse things and make it more difficult to diagnose. It is possible to have RA and have very limited swelling. In my case I experience more puffiness than actual swelling.
- Stiffness. Those with RA have stiffness of the joints. In the mornings or after long periods of inactivity (usually 30-60 minutes will do it for me) our joints become stiff. In the mornings it can take upwards of an hour or more to work the kinks out and for our joints to loosen up.
- Chronic Fatigue is also an issue with RA. Always being extremely tired and waking just as tired as we were when we went to bed is common. Sleep issues are also common which do not help with the levels of fatigue. Waking in the night in pain, not being able to get back to sleep or get comfortable are also issues. Medications such as methotrexate which is a common DMARD (Disease Modifying Antirheumatic Drugs) and usually the first medication prescribed to treat RA which is a low dose chemotherapy drug causes/increases fatigue as well. The constant fatigue limits what we are able to accomplish in a given time period and resting/naping is often required. It should also be noted that while the average person requires 8 hours of sleep. the average RA person requires 10 hours. Medications are often prescribed to assist with getting restorative sleep. Sleep studies are often performed to ensure there are not sleep issues such as Apnea that are causing lack of restorative sleep.
- Depression, Anxiety, Stress and Emotions that are all over the map are common in people with RA. Being diagnosed with a chronic disease that is debilitating, causes deformity and joint damage, changes what you can do, how you do it, the constant fatigue and chronic pain are known to take it's toll. It is also not uncommon for periods of hopelessness, thoughts of suicide, anger and guilt to surface. If you or someone you know is suicidal PLEASE REACH OUT and GET HELP. Remember to keep talking. Expressing yourself in a journal, blog, on-line community really can make a difference. I highly recommend seeing a Social Worker (Arthritis Society has some very knowledgeable and helpful social workers on staff), Psychiatrist, Psychologist or Counsellor to help you work through your feelings around chronic illness. Note: The difference between a psychiatrist and psychologist is the ability to prescribe medication. There is no shame in reaching out for help to learn how to manage your illness and your feelings.
- As with most auto-immune diseases women are three times more likely than men to develop RA. Approximately 1% of the worlds population has a diagnosis of RA. Of that 1%, approximately 25% will have a severe form of the disease. Most often the disease is diagnosed between the ages of 30 and 60. However children can develop the disease and be diagnosed with JRA. Sadly you are never too young to develop Rheumatoid Arthritis.
- Rheumatoid Nodules are often found in people who have a severe form of the disease. My nodules (I believe I now have a grand total of 36 between my hands and feet) presented before treatment and helped to diagnose my RA. Although some medications (Methotrexate is one) that are used to treat RA can cause nodules. In this case my understanding is that the nodules do not represent the severity of disease activity but are a side effect. When nodules form as a result of medication the medication is usually discontinued. Nodules are lumps that form near damaged joints and can vary in size being the size of a pea to the size of a walnut. They can be hard or squishy, some move others don't. Nodules can be removed surgically but often grow back within just a few months. In most cases they are not painful but are often tender. They can have tendon involvement. Be sure to mention development or changes in nodules to your Rheumatologist.
- Symmetry is important for a diagnosis of RA. What happens on one side of your body is mirrored on the other. This means if the fingers on your right hand are impacted so are the fingers on the left hand. Sometimes it takes a day or two to catch up but it is extremely rare for it to involve only one side of the body. In my case even my nodules are symmetric. Sometimes it takes 24 hours but I will develop mirrored nodules on the opposite side in the exact location of the first. This is the one piece of the disease that amazes and saddens me at the same time.
- For the best prognosis when RA is diagnosed early and aggressive treatment is required. The goal of these treatments which are harsh in their own right is to slow the disease progression down so that it does not reach your organs.
- Mortality - It is commonly accepted that the lifespan of an individual with RA is shortened by 10 - 15 years depending on what you read. Organ involvement (lungs and heart are most common) are one of the causes of the high mortality rates in patients with RA. Other causes for the high mortality rates are the systemic inflammation which accelerates mortality and of course there is less preventative care. It is not unheard of for Cardiologists to not even be aware that RA can cause Pericarditis which is an inflammation of the pericardium. Respiratory causes, are a significant contributor to excess mortality in patients with RA ranking as the second major cause of death in the RA population. A number of pulmonary manifestations are associated with RA. The most common is interstitial lung disease (ILD) which leads to pulmonary fibrosis (PF) during which the lung parenchyma is involved. In my books these are all really good reasons to take the medications to try and cut down on these risks and if we can't stop the disease then we can at least slow it down so that we do not suffer from organ involvement any sooner than necessary!
- RA is diagnosed by medical history, exam, review of symptoms, blood tests, X-Rays, Ultrasounds, MRI's and any combination there of. It should be noted that there are large numbers of people such as myself who are seronegative. This means that our blood tests do not show the typical signs of RA. In my case my Rheumatoid Factor (RF) is normal, my ANA, Sedrates etc. are normal. The only marker I have in my bloodwork is the Anti-CCP which was more than double the acceptable limit. This is the one test that accurately is used for determining RA to my understanding. Interestingly enough you can have a positive RF and still NOT have RA...Confusing or what! My Rheumatologist explained to me that my Anti-CCP was a predictor that I would develop RA (usually within 10 years) but it was my symptoms and nodules that clearly indicated that my RA was active.
- Everyone with RA is hopeful that one of their medications will allow them to go into remission (a state where the disease is inactive). Remission is elusive and only reached by approx. 1% of all people diagnosed with RA.
- In the beginning stages RA is an invisible illness. Even as the disease ravages our bodies the damage is often only noticeable when pointed out. Eventually the chronic pain, inflammation, nodules and damage to joints becomes apparent. While we are at the invisible stage we are often met with people who do not understand the severity of pain, fatigue and limitations that we face daily.
- Reduced range of motion, increased pain, joint damage, muscle weakness etc. become more noticeable as we rely on canes, wheelchairs, wear splints, our gait changes (often walk with limp) and we look for other creative ways of dealing with the results of our illness. There are many visible signs of RA that I will cover in another blog.
- Surgery is often in the future of an RA patient. Joint Replacement (Hips, Knees, Shoulders are common), Joint Fusion which straightens joints that have been damaged (fingers, toes) and general arthroscopic surgeries to clean out the debris from the damage that is occuring.
- Loss of Mobility is the hardest part to get used to for a number of RA patients. The damage and inflammation take their toll and patients often rely on canes, scooters and wheelchairs to get around. Mobility is affected by the many foot, knee and hip problems.
© 2011 Rhonda