View Full Version : just been diagnosed with lupus and i need some help

02-02-2005, 05:12 PM
Hello, my name is Tammy and I'am 38 years old and have been diagnosed with lupus a month ago after a long time of suffering with this. At first nobody knew what was wrong with me and thought it was all in my head. I even thought at one moment that I was actually going crazy. I hurt all the time especially in my chest,and arms. My legs are now starting to twitch on me. I'm finally getting to go to a rhumatologist for the first time on monday feb 7 . I know it may sound nuts but i live in a very small town in Wyoming, and it took a long time to discover what was wrong with me.Can someone help me try to understand why my body hurts so bad espeacially in my muscles?Thanks for listening.Oh and my family thinks I'm being lazy. That really hurts my feelings.Tammy

02-04-2005, 01:04 AM
Hi Tammy;
First let me say that IT IS NOT ALL IN YOUR HEAD AND YOU ARE NOT LAZY!! All of us have had to endure those misconceptions during the course of our disease. Your family needs to be educated about your disease, its symptoms, treatments how it affects you physically, emotionally and cognitively!!
Joint and muscle pains are very common symptoms of systemic lupus erythematosus (SLE). In fact, ninety percent of people with lupus will experience joint and/or muscle pain at some time during the course of their illness. The problems associated with the joint and muscle inflammation and pain are varied. The aching pain in joints is often called arthralgia and the pain in the muscles is called myalgia. These pains can often mimic a viral or flu-like illness. They may have the characteristic symptoms of arthritis, that is, joints that are not only painful but also swollen, warm and tender. Still, some sufferers have to deal with intense muscle inflammation (myositis) and may have progressive weakness and loss of strength in addition to their muscle pain.
Joint and/or muscle pain can occur at any time during the course of SLE, or may even precede the other symptoms of the disease by months or years.
The joint pain of lupus arthritis often comes and goes. Individual attacks may last several days or weeks and then subside, only to recur at a later date. The joints farthest from the trunk of the body (i.e., fingers, wrists, elbows, knees, ankles) are most frequently involved, usually several at a time. Stiffness and pain in the morning, which improves as the day goes on, is characteristic of lupus arthritis. Later in the day, as you become more tired, the aches may return. Another characteristic of lupus arthritis is that the pain is usually symmetrical, which means that it affects similar joints on both sides of the body. Therefore, a single, chronically painful and swollen joint, even in a person who has been diagnosed with lupus, is most likely due to some other cause. Backaches or neck pains are not caused by lupus arthritis since the spine is not involved in lupus.
Lupus arthritis does not usually cause deformities or destruction of the joints. symptom of lupus, diagnosis can be very difficult, if not impossible.
Treatment. Lupus arthritis is usually treated with non-steroidal, anti-inflammatory medications (e.g., aspirin, ibuprofen, naproxen). These medications are effective in the majority of cases and are usually well tolerated. However, when this line of therapy is not effective, antimalarial drugs such as hydroxychloroquine (Plaquenil) may be added. Corticosteroids (prednisone) are used rarely and only when the joints remain swollen and painful despite other treatment. Cytotoxic medications should not be used to treat only lupus arthritis. It is also important that you learn joint protection procedures to be able to rest your joints during flares of lupus arthritis.
Muscles (myositis):
Unlike the joints, the muscles can be seriously damaged by SLE. This damage may result in muscle weakness and loss of strength unless early, appropriate treatment is given. Inflamed muscles may not only be painful, but may also be tender to the touch. Muscle weakness is the most common symptom of lupus myositis.
Characteristically, the muscles of the trunk of the body are affected (i.e., neck, pelvic girdle and thighs, shoulder girdle and upper arms). Pain in the small muscles of the hand or weakness of the grip are not symptoms of SLE myositis. However, nerves as well as muscle fibers can be caught up in the inflammatory process and, occasionally, weakness of the wrists and hands or the ankles and feet may occur as a result of nerve damage.
The diagnosis of SLE myositis is relatively straightforward. There are chemical enzymes (e.g., CPK, SGOT, SGPT, aldolase) which are normally concentrated within muscle fibers and which escape into the blood circulation when muscle fibers are being damaged by inflammation. Thus, tests for these chemicals in the blood are abnormal in SLE myositis. These tests can also be used to determine the severity of muscle involvement: more severe myositis results in a higher level of these enzymes in the blood. Such tests are therefore useful in the diagnosis of SLE myositis, and in following the course of the disease and its response to therapy.

Just as the electrocardiogram (EKG) reflects damage to heart muscle, the electromyogram (EMG) can be used to determine the character of muscle damage in lupus myositis. When inflammation is present, the EMG shows a characteristic pattern of electrical response. A microscopic examination of a sample of muscle tissue (biopsy) may also be taken from a painful muscle to confirm the presence of inflammation and to help identify the severity of the inflammation.
Treatment. Corticosteroids (prednisone) are necessarily prescribed for the treatment of SLE myositis. High doses (50 mg. per day or more of prednisone or equivalent) are initially given for prompt suppression and control of the inflammation. The steroid dose is gradually reduced as the inflammation subsides, as determined by the patient's symptoms and enzyme levels in the blood. The vast majority of people with lupus respond promptly and well to corticosteroids. It is seldom necessary to augment treatment with cytotoxic or immunosuppressive medications.
Once the acute, inflammatory phase is past, a well directed exercise program should be started to help the patient regain normal muscle strength and function.
Another common cause of joint and muscle pain can be a condition known as Fibromyalgia. A large percentage of Lupus patients also suffer from this condition. Fibromyalgia is a chronic disorder. Its characteristics include:
- widespread pain in muscles and joints
- fatigue
- generalized weakness
- non-restful sleep.
Other symptoms of fibromyalgia include:
- headache
- changes in mood
- difficulty in thinking and concentration
- irritable bowel
- urinary urgency
- applying pressure to specific locations on the neck, back, chest, and limbs (tender points) will cause pain and tenderness.
The cause of fibromyalgia is not known.

Fibromyalgia is treated with NSAIDs (non-steroidal anti-inflammatory drugs) and other agents to relieve pain. Other medications can be used to help get restful sleep. A comprehensive program of aerobic exercise, physical therapy, relaxation techniques, and coping skills is beneficial for many people with this disease.
I hope that this information has been of some help to you. We are here to support you and to offer you comfort and to let you know that:
You Are Not Alone!!!
Peace and Blessings