If your blood work etc. for Lupus are coming back negative, it is quite possible that your Fibromyalgia is active and causing you many of the problems that you describe. I also have Lupus and Fibromyalgia. The widespread muscle pain and burning are attributed to my Fibromyalgia. Like you, I do not have organ involvement with my Lupus, but my Fibro is very active and kicks my butt on a regular basis. Lupus and Fibromyalgia share some common symptoms: Pain, Fatigue, Brain Fog, headaches, dizziness, etc.
However, hair loss and mouth sores are not symptoms of Fibromyalgia. Now, it is also possible to have Lupus with negative labs. Lupus is a disease that is hard to define because it changes and, yes, it can change quickly. Symptoms come and go and new symptoms appear. It is for this reason that most doctors will routinely run certain tests to determine if your disease is active, what parts of your body are involved and if your medications need to be changed or new ones added. It sounds as if you are due for new blood work and lab tests.
Here is some information about Fibromyagia, in the event that your other symptoms are due to this and not to your Lupus:
The Fibromyalgia pain is commonly located in the neck, shoulders, back, and hips. The tenderness is usually and frequently worse in the mornings and has been described as flulike, burning, throbbing, aching, or stabbing.
Fatigue is another frequent complaint associated with fibromyalgia. In fact, it occurs so commonly that some doctors think fibromyalgia and chronic fatigue syndrome are the same disease. The severity of the fatigue can range from mild to incapacitating. In its worse form, the fatigue can be so debilitating that we have trouble doing daily activities and some of us have trouble keeping our jobs. No amount of sleep at night or rest during the day seems to help at all.
It is not uncommon, with Fibromyalgia, to feel intense pain in your ribcage and chest. Chest pain in fibromyalgia is usually nothing to worry about, but occasionally it can indicate other problems. The chest pain associated with fibromyalgia is referred to as costochondritis. It is an inflammation of the cartilage that joins the ribs to the chest bone. It is this inflammation that causes the sharp chest pains inside the chest wall. The pain of costochondritis often mimics the pain of cardiac problems, including heart attacks and stroke. This can be quite scary sometimes, but costochondiritis rarely causes any physical complications with the heart.
Costochondritis affects about 60% to 70% of fibromyalgia sufferers and it is very common in women, especially between the ages of 20 and 40. Costochondritis rib pain can last for weeks and even months, and can reappear at different intervals throughout your illness.
Costochondritis pain is often described as a stabbing or aching pain in the ribs. The sharp pain caused by costochondritis generally begins in the chest. This pain can then radiate outwards, attacking the shoulders, neck, and upper abdomen. Costochondritis pain can last for long periods of time and chronic costochondritis is not uncommon. However, most pain should be gone within 6 months to a year from the onset of symptoms.
costochondritis symptoms include: sharp, stabbing pain in the front of the chest - ribs that are sore to the touch - pain on the left or right side of the chest - upper chest pains - burning pain in the ribs - pain that radiates up the back of the neck and shoulders - pain in your chest when you sneeze or cough - pain that increases with activity, exertion, or deep breathing -
pain that decreases with rest, movement, or slow breathing
Costochondritis is also associated with other, secondary symptoms. These include: rapid heart rate - irregular heart rate - shortness of breath or difficulty breathing.
Ask your doctor about Plaquenil ( (Hydroxychloroquine) and NSAIDs for your pain. Since you have a high ANA, ask your doctor about Prednisone (Corticosteroids). These are the cornerstone treatments for Lupus. The Plaquenil will help with the mouth sores and hair loss and, sometimes, with the fatigue. The prednisone is a cortisteroid and an immunosuppressant. The immune system protects against foreign bacteria and viruses. In Lupus, the immune system produces antibodies, which become overactive and cause undesirable effects. Prednisone suppresses the production of these antibodies.
You are takine Effexor. This drug is an antidepressant in a group of drugs called selective serotonin and norepinephrine reuptake inhibitors (SSNRIs). Anti-depressants are often used to treat Fibromyalgia. Effexor is not approved for use for Fibromyalgia. This means that when prescribed for the treatment of fibromyalgia, Effexor is being used "off-label." Although it is not entirely clear how Effexor works for fibromyalgia, the drug may help block the nerve pain signals in the spinal cord or brain. This may help with the pain caused by fibromyalgia.
Using Effexor for fibromyalgia can cause serious side effects. Weight gain and sexual side effects are common. Less common, but life threatening, is the increased risk of suicide. Addiction and subsequent withdrawal symptoms also rank on the list of serious Effexor side effects.
Only you can decide if Effexor is the best means of treating your fibromylagia symptoms. It is important that you discuss side effect concerns with your doctor (especially since he keeps upping your dosage).
I hope, with this information, that you can have an informed conversation with your doctor about your lab work, your treatment and your symptoms. I wish you the very best.
Peace and Blessings
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