View Full Version : Please, please help!

03-01-2005, 03:43 PM
I have been in the hell of no diagnosis since Nov. 2003. Then I had an ANA of 1:640 with high titers, along with all-over pain and extreme fatique; in fact, the connective tissue pain is what prompted my family doc to order the auto-immune blood work stuff. Two following ANA tests were negative, as was the lupus profile. I saw one horrible Rheum who got mad at me when his therapy didn't work--prednisone. Long story short, I got a new Rheum. He says it's fibromyalgia. I had another ANA 2 weeks ago; this time positive of 1:1280 with high titers. Recently also had a urinalyisis for insurance that revealed protein in urine and RBC in urine. Protein normal range was under 30. Mine was 37. One of my hands has started to swell, and it often feels as though there is a deep itch in my bones in my wrists and thumbs. Rheum says he will reorder lupus screen. I am so confused. Do I have lupus or not? In the meantime, I am a full-time college professor (I write, grade, etc. all the time.) My hands are an agony to me! Frankly, it is even painful to hold my hands the way one must in order to wipe myself in the bathroom. I am also the mother of a 5 yr old. Do you all think it's lupus or just fibromyalgia, which I know is painful, but not as serious as lupus. Some other factors that may be at play here--I went through menopause very abruptly at age 37 and have been on HRT for apprx. 18 mths. I also have history of severe bleeding ulcers that began at age 5, have had apprx. 50 units of blood transfused over my lifetime, so I cannot, of course, take NSAIDS at all. Right now I take nexium (have been on this for nearly 10 yrs and will always have to take it), HRT, and mirapex for fibromyalgia and occassional ambien. I just went off lexapro--tired of all the drugs. Instinctively I know too many are a bad thing. In the meantime, I stay slim, exercise, start each day with a bowl of oatmeal and end each evening with a stout glass of red wine. I welcome your comments and anyone who can speak knowledgeably about this to me.

03-04-2005, 09:55 AM
Hi Sela :lol:
I don't know how knowledgeable I can be, but I can certainly be supportive and tell you that, unfortunately, most of us have gone through the diagnosis hell that you are speaking of.
Also, there are a large number of us who have SLE and who ALSO have Fibromyalgia...so, you could have (and be suffering from) both. However, most Lupus patients develop Fibromyalgia long after they have been diagnosed with Lupus. It does not often happen in reverse. Also, Fibromyalgia DOES NOT respond well to corticosteroids (such as prednisone) while Lupus does! That may be why the drug did not work for you!
Almost every person diagnoses with lupus has a positive ANA and high titers...however, a positive ANA does not mean a definitive diagnosis of Lupus. You know that you must fit at least four of the eleven criteria:
Malar Rash Rash over the cheeks
Discoid Rash Red raised patches
Photosensitivity Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers Ulcers in the nose or mouth, usually painless
Arthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Disorder Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Disorder Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antibody Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Disorder Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
No single laboratory test can definitely prove or disprove SLE. Screening usually includes a complete blood count (CBC), liver and kidney screening panels, ANA tests, urinlaysis, blood chemistries, and erythrocyte sedimentation rate (ESR). High titer anti-DNA antibody or anti-SM antibody are important indicators of SLE. Immunologuc studies, such as those of compliment components (C3 and C4) and other autoantibodies (anti-La and anti-Ro) are used to help evaluate your immune status and to monitor the activity of SLE. Sometimes, biopsies of your skin or kidney, using immunofluorescent staining techniques, will also help to support a diagnosis of SLE. Then, there are a variety of laboratory tests, X-rays and other diagnostic tools used to rule out other pathological conditions and to determine if there is involvement of any specific organs.
On this forum you will find explanations for the above tests!
Here is an article that I found that deals with the issue of Lupus or Fibromyalgia:
"This is not an uncommon question. Unfortunately some fibromyalgia patients are erroneously diagnosed as having lupus, a potentially dangerous condition that affects about 2 in every 1000 people. Through your doctor and educational literature and support groups, you have learned lupus patients can have involvement of almost any system of the body including severe involvement of the kidneys, heart and brain. This is scary information; even though you know that only a minority of lupus patients have such a severe course.
The commonest problems encountered by most lupus patients are joint pains, muscles pains, fatigue and skin rashes. It is not unreasonable to assume an increased level of fatigue and increasing joint pain heralds a severe flare of your lupus that may even progress to life-threatening internal organ involvement. Such thoughts are anxiety-provoking and depressing; they can cause sleepless nights. Both you and your doctor may be convinced that your accelerating symptoms represent a lupus flare. You may be put on prednisone or the dose of your steroids may be increased. But before you and your doctor jump to conclusions, consider the possibility that you could also have fibromyalgia.
Fibromyalgia is a common condition of musculoskeletal pain, sleep disturbance and fatigue, that affects about 20 out of every 1000 persons. Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. It is important to understand that the fibromyalgia in these patients develops after the lupus has become well established. It is extremely rare for a fibromyalgia patient to later develop lupus - I have only seen this in 2 patients in 30 years of practice as a Rheumatologist. Although fibromyalgia patients have widespread body pain which arises from their muscles, they often feel that the pain is originating in their joints. In addition to widespread pain, other common fibromyalgia symptoms include a decreased sense of energy, poor sleep and varying degrees of anxiety and depression (related to a changed physical status). To complicate matters further, other medical conditions are commonly associated with fibromyalgia. These include irritable bowel syndrome, tension headaches, migraine, irritable bladder syndrome, premenstrual tension syndrome, cold intolerance (including Raynaud?s phenomenon) and restless leg syndrome. This combination of pain and multiple symptoms may lead physicians to pursue an extensive course of investigations, which are often frustratingly normal. In fact, there are no blood tests or x-rays which reliably diagnose fibromyalgia. In order to diagnose fibromyalgia, a physician must take a careful history and perform an examination which focuses on specific local areas of tenderness. These locations are called tender points. As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically. The American College of Rheumatology have developed criteria for diagnosing lupus - just as they have for diagnosing fibromyalgia. To have a definite diagnosis of lupus you must have 4 or more of the eleven criteria.
It is important to realize that the symptoms of fibromyalgia do not respond to corticosteroids such as prednisone or even immunosuppressive agents, such as azathioprine, methotrexate or cyclophosphamide. These are powerful and important drugs in the treatment of lupus but are often associated with undesirable side effects. Thus, making a distinction between fibromyalgia symptomatology and lupus symptomatology is of great practical relevance in deciding what medications to use.
Most lupus patients are often shocked to hear that they also have fibromyalgia, and in many cases don?t like being given that diagnosis. They somehow think that it is not a real disease and detracts attention away from the realities of having lupus. I can understand these thoughts. However, knowing that some of your musculoskeletal pain is fibromyalgia-related and not lupus should also be good news -- as who wants to have lupus flare? Lastly, there are some "lupus" patients who have only fibromyalgia, but on testing were found to have a weakly positive ANA. They were incorrectly diagnosed as having lupus on the basis of the blood test. There is an increasing recognition among lupus specialists that this false diagnosis scenario is not at all uncommon."
Let me know if I have been at all helpful to you.
I wish you the best and please know that you are not alone
Peace and Blessings

03-13-2005, 09:35 PM
wow saysusie really knows her sh*t.
for your hands, as a musician i truly sympathize and would like to suggest a little self care-
i got a parrafin hot wax hand bath. you can get one at bed bath adn beyond for only $10-12 and it is such sweeet relief. it really will take the swelling down and relieve some pain. i usually dipped my hands (one at a time) 3 times, letting each layer congeal a little, then let the heat heal your hands for 5-10 mintues, then repeat the process 2 more tiems. there was a visual difference in swelling, as well as pain relief-

03-18-2005, 05:54 PM
i must also add that 90% lupus sufferers have positive ANA I am one of the 10% that doesn't.