Read Carol Lange’s personal and very detailed description of a rheumatoid flare; what happens physically inside and outside the body; what happens to the emotions and the capacity to fully engage with life and loved ones at a time of unpredictability, fear and the need to survive. Written to help patients develop a greater sense of self and a deeper compassion for others.
UNDERSTANDING THE PAINFUL RHEUMATOID ARTHRITIS (RA) FLARE
Understanding the Painful Rheumatoid Arthritis Flare is a re-publication of an original article authored by Carol Lange, a co-founder of the Road Back Foundation, to promote greater understanding of the sequence of events that she identified as a pattern to her flares, including the emotional elements she experienced. The story of how Dr. Thomas McPherson Brown was able to control one of Carol’s severe flares is described on page 295 in The New Arthritis Breakthrough, by Henry Scammell.
A Patient’s Perspective
1. The Anatomy of a Flare
In the beginning, there is usually no conscious awareness that something is wrong; things are just not right. Exercise becomes an effort and muscles tend to become tight, even sore. However, the muscles still respond to exercise and the next day, you wake up mobile and feeling fairly well. The feeling of well-being, however, does not last. While you are not really aware of a change, feeling good is replaced by a nonspecific feeling of non well-being. Nothing may be obviously wrong but you become lethargic, tired, and have difficulty sleeping. This stage continues for a few days, varying in degree, but moving towards feeling awful.
Sometimes, there is an occasional pain– intermittent, usually twinges, stabbing but quickly over. By the time you are consciously aware of not feeling good, there is an incessant, aching pain. Besides fatigue, pain, a feeling of malaise and swollen joints, a temperature check will indicate a low grade temperature or the opposite – chills.
It is extremely difficult to recognize the onset of a flare unless it is fierce and dramatic as sometimes happens. Rather, you look back as you begin to come out of it and feel you should have been able to spot what was happening. It is insidious, depressing.
Depression is a very real part of the anatomy of a flare. It begins with the feeling of non well-being. First there is simply a lessening of enthusiasm for things normally enjoyed. As the pain and swelling increase, mobility decreases and common daily routines become a test of endurance, determination and consistent defeat. Now depression becomes more easily recognized for what it is. The solution to depression is what is hardest, (to be able) to continue as though nothing were wrong.
A whole new realm of pain ensues: manifestations of acute ache, burning pain, stabbing pain and skewering pain at the same time in different joints and muscles. You have reached the peak of the flare.
Sleep is difficult or impossible, but necessary for the healing. You vegetate, moving only when necessary or, in contradiction, roaming without purpose, perhaps in an unconscious effort to escape the pain. There may be a loss of weight, loss of body to your hair, a sagging of your facial features, an excess buildup of tartar on your teeth and a blurring of vision. Your whole system is rebelling and under attack. Concentration is difficult.
Finally, when you have lost all track of what is normal, the pain is not quite so intense, a joint may begin to move more easily and swelling decreases. There are still stabbing pains, but they have lost their heat and the ache occasionally quiets. Movement returns slowly and with great effort, but it returns. Now you must exercise to encourage the mobility, to strengthen the weakened muscles.
As the flare subsides, there is almost a compulsive need to do things. Suddenly you become aware that you are sleeping at night. The sleep may be still broken, but now you can go back to sleep rather quickly. At last the flare has passed.
2. The Inflammatory Process
Rheumatoid or rheumatism refers to a category of diseases causing inflammation, stiffness, and pain in joints and supporting structures. Arthritis is the involvement of the joints and immediate surrounding structures by disease characterized by inflammation, pain, and swelling, often resulting in crippling deformities.
One of the most easily recognized signs of rheumatoid arthritis are joint inflammation. The word inflammation means to set on fire and describes the reaction of tissue to injury. Reddening, swelling, pain, and heat are common manifestations of inflammation. Reddening results from the increased blood flow to the area. White blood cells (lymphocytes) are sent by the immune system to destroy the foreign invaders and to break down and remove dead and damaged tissue. The synovial membrane (joint lining) increases its production of fluid, causing swelling. Pain is the body’s warning to protect the injured area and draws attention to the need to do something about it. The heat comes from increased metabolism in the area.
There are two phases of joint inflammation: the exudative, and the chronic. The exudative phase involves the lining layer and synovial effusion. Cartilage can become damaged during this phase. In the second phase, the inflammation moves into the sub-lining layer. In this stage, infiltrates that are present are said [by some] to be resulting from a cellular immune response to an antigen. A commitment to future research in RA will be a continued attempt to identify a possible infectious agent as the inciting antigen in this disease. It is in the second phase that the permanent tissue destruction occurs.
Extensive research has allowed scientists to better understand the enzymes that are released during inflammation. These enzymes, normally stored in little packages or sacs inside the white blood cells, are called lysosomes. Normally, release of these enzymes would help cells to digest invading bacteria, viruses or other foreign material during the body’s fight against the invading agents. In rheumatic diseases, however, these enzymes often spill out of the white blood cells into surrounding tissues where they can digest cartilage, bone, protein, ligaments, muscles or other tissues. The enzyme collagenase is particularly damaging, because it breaks down collagen, a vital part of the normal joint. Researchers have shown that all of these chemical substances are present in inflamed joints. Rheumatoid arthritis can be variable in its course. An increase in disease activity, called a flare, can be characterized by a return or an increase in inflammation. A flare can last for days, weeks, or months.
3. The Emotions of Chronic Disease
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important – your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness; to the selfishness of survival. There is no ability to concentrate on other things; no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work. In short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological, brought on by the lack of predictability in your life. One day, you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and, when it arrives, you are too exhausted to participate or, worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment, because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping, which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come with a sagging of features, particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you and, paradoxically, may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality you may feel that you are sitting on a time bomb, not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and downs of what is happening to you? One day, everything is apparently fine; the next is a struggle just to function.
Yet, over time, there develops a constitutional stubbornness, which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills, because you can’t rely on having energy or feeling well enough to take things as they come.
Just as these changes have gradually taken place in you, as the disease progresses, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps, but making progress nonetheless. Your interest in things will return and you’ll find that you are doing more, living life in a normal way, without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self – the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills that you develop in order to cope remain, making you a more efficient and focused individual, enabling you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound – and we do.
Carol Lange, rheumatic patient