Systemic Lupus Erythematosus has been called The Great Pretender in certain medical circles. Here is some information on one of our most commonly represented illnesses.
The Great Pretender
Many people who suffer from Lupus go through long periods of misdiagnosis. Lupus can pretend to be many other illnesses, so depending on the symptoms, it is not uncommon for someone with Lupus to bounce around from specialist to specialist for over a year before finding the real cause.
Lupus is in a family of diseases that are treated by Rheumatologists. Rheumatology covers a wide breadth of diseases from musculoskeletal pain disorders, to autoimmune diseases such as rheumatoid arthritis, gout, fibromyalgia, Lyme arthritis, and Lupus.
An autoimmune disease develops when the immune system, which is supposed to defend the body against disease, misinterprets the healthy cells as foreign. Consequently, the immune system attacks the healthy cells as if they were foreign invaders. An autoimmune disease can affect many different types body systems, depending on the type.
McDonald & McDonald has represented, over 20 clients who have had really serious cases of Systemic Lupus Erythematosus.
Some common symptoms of Lupus include profound fatigue, skin rashes and fever episodes. The fatigue is beyond normal tiredness. It entails an immediate need to stop what you’re doing and rest. And the fever is comparable to having a bad flu with the worst fever you have ever had. Imagine having that every day!
Lupus also causes problems throughout your entire body, which is what makes it harder to diagnose. One case of Lupus may wind up affecting the heart first, which may cause pneumonia or an endocarditis. This causes a Cardiologist to enter the picture, when in reality the symptoms are being caused by Lupus.
With Lupus (and this is what tricks most doctors), the symptoms of the disease depend on which body systems are being affected. The most common signs and symptoms include:
- Fatigue and fever
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose (see picture)
- Skin lesions that appear or worsen with sun exposure (photosensitivity)
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
- Shortness of breath
- Chest pain
- Dry eyes
- Headaches, confusion and memory loss
Because the symptoms can vary so widely, doctors have to be mindful of looking at the patient as a whole.
The limitations caused by Lupus which can make employment difficult or impossible, are called non-exertional limitations. A diagnosis of Lupus may not affect your ability to sit or lift 50lbs, but it will affect your ability to remain on task and provide a persistent work effort over the course of an 8-hour day.
As a Lawyer who practices exclusively in the area of ERISA Long Term & Short Term Disability Insurance Appeals, the one thing I consistently hear from clients struggling with Lupus, is that they all tell stories about having to sleep at work to get through the day. Some of them are going out into their car and sleeping at lunch hour, while others may be locking their doors to sleep on the floor for 10 minutes before their phone alarm wakes them. Each one of them experiences an overwhelming need to retreat because they’re unable to stay awake and alert, or the fever symptoms/body aches are suppressing their ability to concentrate and continue working.
These symptoms clearly make it impossible to do any job consistently. Even if it involves sitting at a desk for 8 hours, Lupus can impair any work effort.
Regrettably, there are no foolproof diagnostic tests. There is no blood test or magic genetic test that says “A HA!”. Most of the diagnosis of Lupus is done by excluding other medical conditions and by direct clinical observation of the patient. If someone sees a doctor 4 or 5 times and continues to explain that they’re utterly wiped out and have a rash and experiencing an unexplained fever all the time, the doctor may then begin to build a knowledge of common symptoms (common clinical presentation) and hopefully get some clarity there.
The greatest part of the diagnosis rests on the shoulders of the doctor observing you, treating you, and trying to figure out what is going to make you better or worse.
The evidence to prove the condition relies upon you understanding that you need to provide accurate information to your doctor. Where many of my clients fail, and only some succeed, is that they fail at recording how many times they need to sleep in a day, how many times they feel like they’re having a fever, how many times they needed to rest or lay down, or other symptoms. Your doctor is not with you the majority of the time, so if you can provide information relative to the frequency and duration of these symptoms, it will go a long way in getting a proper diagnosis and proving disability if necessary.
Lupus is a difficult disease to diagnose and tedious on our clients. The best way to manage this terrible disease is to keep a running log of your symptoms and their severity, and show those records to your doctor on an ongoing basis.
Treatments that are helpful to Lupus patients vary. The one that seems to work best is steroid based treatment, but due to the damage steroids can cause to other parts of your body (bones, joints, etc.), it’s only a temporary solution which can’t be continued forever. Obviously the more extreme Lupus cases are the ones where our clients experience the full symptoms, all of the time, without any break from it. This prevents them from completing activities of daily living, even a task as small as grocery shopping. But even the clients who get an occasional break from the symptoms, still feel worn down. The fatigue and fever doesn’t seem to go away, despite the treatment.
Call (877)-428-9806 and we will be happy to answer your questions or concerns re: your long term disability insurance claim.