There are many potential causes for abdominal pain, but two come immediately to my mind. First, CLL can cause enlargement of lymph nodes and the spleen that can be quite significant. Just having enlarged organs can cause pain. Second, CLL (and a particular lymphoma with which it is often confused called mantle cell lymphoma) can sometimes grow in the lining of the stomach and intestines, which causes cramping, weight loss, diarrhea and reflux. In either case, treatment of the underlying CLL might lead to relief. Alternatively, specific measures such as removal of the spleen (if the spleen is enlarged) or drugs to treat reflux symptoms might provide some relief from the pain. Q2. I was diagnosed with CLL [chronic lymphocytic leukemia] two years ago. I have mild symptoms and am not undergoing any treatment at this time. I experience severe fatigue from time to time, but more troublesome is leg and joint pain, which also occurs from time to time. Is this pain caused by CLL? I also have restless legs syndrome (though the symptoms have become more infrequent of late) and some varicose veins. — Sallie, Mexico Leg and joint pain are common symptoms of many diseases. In the case of CLL, increasing disease activity in the bone marrow may cause leg and possibly joint pain — however, this is rare. The more likely explanation is simple aging. For example, the development of osteoarthritis in your joints may cause some of the discomfort. I have many patients (including some family members) whose varicose veins also cause their legs to ache. Although many patients believe it is superficial to treat varicose veins, pain can be overwhelming and treatment might be warranted. If you suspect that varicose veins may be the culprit, a visit to a vascular surgeon’s office might be in order. Q3. I have had CLL for about four years now with no treatment and am at stage II. Recently, my legs have been aching at night so bad that I need to get up and take aspirin. My most recent lab work showed white cells at 32,000 and red cells at 10. Could the low red cells make my legs ache? If a person has poor circulation (atherosclerotic disease) to the legs, a lower blood level might result in pain. If there is testing that demonstrates reduced blood flow in the legs, raising the red cell count might alleviate pain. However, a hemoglobin count of 10 is relatively good and probably not low enough to explain your leg pain, especially at rest. (It is unusual that the pain is at night when the legs are not active.) You should ask your doctor for a thorough evaluation to find alternative causes for the pain in your legs. Q4. I have CLL. I have been treated with radiation, chemotherapy, bone surgery, and two stem cell transplants. My primary means of pain management is OxyContin. I asked my daughter to help pay for my prescriptions, but she refuses and says I’m a drug addict. What can I tell her? — John, Ohio Rarely, the treatments for CLL or the disease itself can leave a patient with chronic pain syndrome. After exhausting the nonnarcotic options for pain management, the treating physicians or pain specialists often offer long-acting narcotics. Unfortunately, the stigma of abuse is associated with medications for chronic pain. The vast majority of patients with chronic pain are not abusers. This stereotype is propagated unfairly through depictions in film, in literature, and on television. Indeed, patients themselves often become concerned and undermedicate themselves because of it. I usually confront my patients and their resistant family members early on about concerns or allegations of abuse. Chronic pain is really no different from any other chronic medical problem. Taking your daughter’s reasoning to its logical conclusion would mean that diabetic children are “addicted” to insulin; patients with hypertension, to blood pressure medications; and patients with high cholesterol, to their cholesterol-lowering medicines. Once patients start these medicines, they almost never get to the point at which they can stop using them without suffering consequences. Your circumstances are no different. If your daughter won’t accept the explanation from you directly, take her with you to the doctor and ask the doctor to explain this to her clearly. In the end, if she can’t understand your medical needs, then kindly ask her to stay out of your medical affairs. At present, she is only making your chronic pain worse. Learn more in the Everyday Health Leukemia Center.
