About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, February 26, 2013

Is it Fibromyalgia or Lupus - or Both?

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!

(Did you enjoy this post or find it helpful?  Subscribe to my blog and you'll never miss another post again! It's easy!  See the directions in the right-hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find that info, so that's a firm - and easy - promise!)


  1. This really spoke to me today Irene, thank you. I just returned from my Rheum and he was having difficulty in knowing whether I was having a fibro or lupus flair. Pain when breathing, rib pain, etc., and so I get the two shots of medrol and play the waiting game. Hoping one day it gets easier to differentiate the two. xo Susan

    1. Fingers crossed for you, @Lupysue, that you get the right culprit! Keep in touch! xx

  2. I can relate my doctor has tested me repeatedly for lupus and the tests were negative. She has long felt that i have something autoimmune going on besides fibro. Finally when I was experiencing a flare on a hunch so put me on steroids to see what would happen, surprise BIG difference so off to the rheum I went. The Rheum told me at my first visit it wasn't a matter of IF I had a autoimmune disorder it was pinpointing which one and that just because my first lupus tests were negative really meant nothing. I have since lost my insurance so I have to wait to go back to her. It is hell to bounce back and forth all the while trying to figure out what to do with your pain. Thank you for this post!

    1. Thank you for reading the post. It sounds as if you've been through quite a bit but now are on the verge of finding what it is that is REALLY going on. Good luck! Fingers crossed. Please let me know how it goes! xx

  3. Dear Irene, Excellent post as always! Scary stuff about 'experts' not having a clue about what they're talking about. Unfortunately I've seen that one time too many.

    I was treated by a rheum at a lupus unit, not long after moving to London. Although my blood tests always came back negative, she said it didn't mean anything. After not knowing what to do with me, I was referred and subjected twice to the dreaded CBT/GET with dire consequences!

    Right now I'd settle for a decent doctor. I have no hope of finding an excellent doctor here to diagnose anything. Last time I talked to my doctor he said, he gets to decide what's serious or not! Although the hospital asked him to see me he refuses to believe I'm too sick to go and see him. I have already had to cancel one appointment. The battle continues!

    Take care, Alpa xx

    1. I hear you and am so sorry this is going on just about everywhere.
      It's so sad that we're, all too often, too sick to be able to go to a doctor's appointment. It's one of my biggest "moans" that even when hospitalized, you can't have ALL doctors you need come to you. Twice I've been hospitalized for how many days (many) in just the last few months. It would have been great to have my cardiologist, a neurologist, endocrinologist and everyone else needed to come to me and test me while there, especially since they couldn't really figure out WHY I was having such weird things going on. But no, I have to go see those doctors in their offices, due to the way insurance works. I miss the days when, if hospitalized, they treated all of you, not just one thing that's wrong. And I felt bad for my attending doctor, my surgeon, as well as the GI. The surgeon said, finally, "you are a complicated lady!" No joke! Being as "old" as he is he too was frustrated that I couldn't get all the care I needed. I've not posted in a while because simply too sick. UGH!
      How are you recovering from the pneumonia, Alpa? xx