As the late comedian Rodney Dangerfield would say, "I get no respect ... no respect at all."
Often, I feel as if those of us with "invisible" illnesses such as fibromyalgia don't get the respect which WE deserve. As a fibro sufferer I all too often feel that my condition is not treated as seriously as other medical problems which can be documented with objective testing such as blood work, urine tests, x-rays, MRI's and so forth. (I'm not even going to go into the amount of respect CFIDS/CFS/ME gets, though in the end it can be described by one word: "none"! Whoops! I went there, didn't I?)
But it can also be dangerous not to be diagnosed with fibro if you happen to have it, or to go to a doctor who doesn't understand or treat fibro knowledgeably. Some doctors want to lump fibro into the psychiatric wastebasket, others ignore it entirely and still others think of fibro patients as hypochondriacs. However, what may even be worse is the situation where doctors claim to be fibro experts - yet are not aware of the treatments available.
Examples abound and I hardly know where to begin, especially given that I DID make that promise to you, as well as to myself, that I was going to work hard on shorter posts. (Ugh!) It's most unfortunate that too many of us can give too many examples of these problems with diagnosis of fibro as well. However, I'm going to give you my take, that is, give you the old college try!
Recently I was given a link to a so-called fibromyalgia expert whose videos appear on YouTube. The video I watched was full of misinformation and confusing language. It saddened me to no end when I thought of all the people out there who were getting this sort of care. It also angered me that this self-proclaimed expert would often refer to "trigger points," hallmarks of myofascial pain, when he discussed features of fibro. How WRONG could he get, and so brazenly?
"Trigger points" are, after all, associated with myofascial pain and "tender points" are found in fibro. Perhaps what scared and upset me the most, however, is that knowing the difference between fibromyalgia and myofascial pain is Fibromyalgia 101, the introductory course. If this self-proclaimed fibro expert actually went to the trouble of making a video tape and sticking it onto YouTube, you'd think he'd know better than to link the two terms "trigger points" and "fibromyalgia" in the same sentence, much less link the two in the same title of the one video I could force myself to watch - which I then eventually had my rheumy/immunologist see in order to make sure that fibro-brain here wasn't missing something. This difference of trigger points and tender points is just basic Fibromyalgia 101, not even going into the challenging aspects of this complex medical condition.
Speaking of which, moving on to a more sophisticated level: musculoskeletal pain, fatigue, low stamina, and cognitive difficulties. Sound familiar? These are, obviously, symptoms of fibro. However, they can also be problems that patients with other illnesses have. Frequently, for example, fibro can coincide with systemic lupus erythematosus (lupus) which is a potentially fatal autoimmune disease.
The coincidence of fibro and lupus in the same patients was described over 20 years ago by Dr. Peter Lipsky, a famous Harvard lupus expert. However, too many doctors today still don't realize that both conditions can occur in the same patient and that one cannot tell which symptoms are caused by which condition unless a careful evaluation is made. There is a dynamic interaction in the human body and things can change quickly depending on various triggers. Examples of these triggers are stress, overexposure to sunlight, poor sleep and bad infection (like the flu). Why is this important? (I'm so glad you asked!)
If one has a flare of fibro, and also has lupus, the wrong treatment may be given to that particular patient if the treating doctor is unaware of the fact that the patient he is treating for lupus also has fibro. For example (is there no end to examples today?), a patient with both fibro and lupus presents to the doctor with an increase in joint and muscle pain. The doctor may assume that it is a flare of lupus and treat it with cortisone-type medications and possibly immunosuppressive agents like methotraxate, azothioprine and cyclophosphamide. However, this could be a huge mistake if the increase in pain is due to fibro and not lupus.
First of all, the treatment with the above medications won't work if fibro is the culprit. Second, these medications can have pretty nasty side-effects. Cortisone can cause fluid retention, weight gain, brittle bones. If an immunosuppressive is given when a doctor believes you have a lupus flare but it's actually fibro or a fibro flare, the immunosuppressive can actually cause such life-threatening complications as a low white blood cell count, which can lead to infections, or a low platelet count, which can cause bleeding in the brain and other organs.
The flip side of the above scenerio is when a fibro patient who also has lupus has a flare of lupus but the doctor thinks that the worsening symptoms are due to the fibro getting out of control. What can happen is that the doctor might adjust or change the fibro meds with the patient going into kidney failure or having a seizure from the lupus being untreated.
The moral of the story is: you need to get an excellent doctor who understands these conditions inside out. Actually, we deserve more excellent doctors who can help us. You also need an excellent work-up to make sure a correct diagnosis - or diagnoses - is made. We deserve that as well. Just because you have lupus doesn't mean you can't get fibro and vice versa.
In the old days lupus was called "the great imitator." We know now that this title can apply to fibro as well.
Now that is worthy of Rodney Dangerfield, as in the first part of his last name: it is DANGEROUS (get it???? huh? huh? nudge! nudge!) to have your doctor misinformed.
As always, I hope everyone is feeling their best, only better! Ciao and paka!
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