This Week in Lupus

A beautiful 15 year old girl died due to complications of Lupus, and a medical staffs inability to allow her to seek other forms of treatment. Her mother insisted that side effects of Cellcept were causing her extreme pain, regular infections and required her to go through dialysis regularly. She ordered the doctors to stop the treatment. Shortly after, they filed a complaint with child welfare authorities accusing her of medical neglect. An autopsy report determined she died of "kidney failure due to Lupus." My heart goes to her family. I can't believe it's possible that this happens in America today. We don't have a choice as to what kind of medical treatment we receive? I know I've been pushed Flu Shots and other vaccines on me SEVERAL times by doctors. They don't even ask if you want to get it, they just say, "You're getting a flu shot." and in like three seconds it's done. [ link ]

The Concurrence of Lupus and Fibromyalgia

The concurrence of Lupus and Fibromyalgia: implications for diagnosis and management by Robert Bennett MD

It is increasingly evident that Fibromyalgia is a common accompaniment of lupus. In North America Fibromyalgia is amongst the 3 most frequent diagnoses made by rheumatologists (1,2). Many physicians feel uncomfortable with this diagnosis as there are no confirmatory investigations and current treatment is not very effective (3). Even when the diagnosis is correctly considered, physicians may search for some alternative (and more acceptable) explanation. If an abnormal test is found, it may be seized upon with an unrestrained zeal. Often this abnormal test is a weakly positive antinuclear antibody test (ANA) and the patient is told she/he may have lupus. Even when it is apparent that the diagnosis of SLE is incorrect, the patient is often reluctant to abandon this diagnosis. Two common clinical situations are seen in relation to these issues: (i) Fibromyalgia in a Lupus patient may be missed or denied, and (ii) Fibromyalgia may be misdiagnosed as Lupus.

Please read the rest of this article at http://www.myalgia.com/concurrence_of_lupus_and_fibromy.htm.

Lupus & Fibromyalgia Analysis by hss.edu

Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have Lupus also have Fibromyalgia. It's important for people who have Lupus to know about Fibromyalgia for several reasons:

• Many of the symptoms are the same. For example, fatigue, joint and muscle pain, morning stiffness, hand symptoms without observed swelling, Raynaud's phenomenon (painful hands or feet in response to cold), numbness, and headaches can be seen in both of these disorders.


• The treatments for Lupus and Fibromyalgia are very different, but Fibromyalgia can get in the way of judging the Lupus activity. If you are being treated with immunosuppressive drugs for your lupus but have continued pain and fatigue, those symptoms may be considered evidence of continuing Lupus activity, when they might be Fibromyalgia. So there is the theoretical risk that you might be treated with higher doses of immunosuppressants and be at risk for their side effects, when such drugs don't help Fibromyalgia and may not be needed at that time for your Lupus. For example, among people with lupus, the occurrence of fatigue correlates more strongly with the presence of Fibromyalgia than with their degree of Lupus disease activity or damage.


• The proper diagnosis can alleviate anxiety. For example, if you have numbness and it can be determined that the cause is Fibromyalgia, that can be reassuring because you know it won't progress and cause more serious outcomes, as might occur in numbness due to lupus. Because Fibromyalgia doesn't have the same internal organ manifestations and potential for damage that Lupus-mediated problems have, symptoms may have a better prognosis (outlook) if they are caused by Fibromyalgia.

Discerning the difference is also important for research. Fibromyalgia seems to affect the validity of some of the measurements of Lupus activity. Whether a new drug works for Lupus or not can be hard to figure out if 25% of the participants also have Fibromyalgia and are having symptoms for that are erroneously labeled as Lupus activity.

Please read the rest of this informative website at http://www.hss.edu/conditions_14358.asp.

NYT: Is Fibromyalgia Real?

In this article by the New York Times, the new medication approved for Fibromyalgia treatment, Lyrica, is discussed. As well as discussing whether or not the disease actually exists.

Since I was prescribed Lyrica about two weeks ago, I wanted to respond to the article. And what better place to do so than on my blog?

First to address the questioning of Fibromyalgia's existence. There are still many people, including doctors, who don't believe it is a real condition. Which means (at least to myself) that these doctors think of it as 'lazy woman syndrome'. Fibromyalgia, and even Lupus, have been stigmatized as that for a lot of years. Even now, when there is more scientific research related to each illness, people deny it. And the only reason why, it seems, is because they can't figure out how to treat us. Why should we be branded liars, because you can't find the answers?

I need to state that I have not been paid by drug companies, as some nuts pushing herbal Fibro "cures" may imply. Since I started taking Lyrica - I've felt fantastic. Better than I've felt in five years. I have been sleeping better. I've been going on walks. I've been more motivated and energetic. I still need the pain medication but not nearly as much. I've cut down half from what I was taking before. I've been in a better mood. This medication has been a lifesaver so far. I have a little bit of hope. As for the side effect of weight gain - it's a good thing in my case. I've lost over 30 pounds in the last year due to lack of appetite. I was swallowing food whole with a drink of water for awhile, just to get some sugar in my blood. The Lupus is still very debilitating as I have extreme photosensitivity. Photosensitivity is a side effect of Lyrica, as well, so I'm getting hit hard when I go outside or to the store.

Basically, if you have Fibro, I suggest giving it a try and seeing if it's for you. Don't listen to the nuts.

Fibromyalgia Harder to Cope With Than Other Conditions

"Research says with a high level of certainty that Fibromyalgia sufferers find it more difficult to cope with their illness and the symptoms and effects than of other rheumatic illnesses. Among the studies Fibromyalgia sufferers' most common complaints are: worrying about whether their pain will end, anxiously wanting the pain to go away, unable to stand their pain."

Please read the rest of the article at http://www.ei-resource.org/news/fibromyalgia-news/fibromyalgia-harder-to-cope-with-than-other-conditions/