Fibro

Recently I ran into an old acquaintance.  We bump into one another once or twice a year and usually spend time catching up and promising to get together one of these days.  This time, she droned on and on about how much pain she’s in, how she aches all over, how she’s tired all the time, and about her new diagnosis of fibromyalgia — the cause of all her problems.  Hearing her moan endlessly about her aches and pains made me understand a bit better some of the comments one hears about fibromyalgeurs.  I couldn’t wait to get away.

People with fibro are generally considered psych cases.  According to one ER nurse, it’s the “it hurts to be fat” diagnosis.  Reading medblogs one gets the idea that people who claim to have fibromyalgia are:

  • lazy
  • drug-seekers
  • clinically depressed and in denial
  • looking to live off disability
  • beneath contempt

Why does a fibro diagnosis evoke such strong feelings?  What is fibromyalgia?

First, it is not a disease.  Fibromyalgia Syndrome (FMS) is a label for a group of symptoms. Widespread pain is the main symptom.  Sleep disturbances are common, as are memory problems and fatigue (and I have no idea why those are considered separate issues).  About 30% of people are depressed at the time of a FMS diagnosis.

Diagnostic criteria from the American College of Rheumatology (1990) is:

  • Widespread pain > 3 months affecting all four quadrants
  • 11 of 18 tender points
  • Pain not explained by another condition

The tender-points test is quite subjective, and difficult for many to do well, so in 2010, ACR developed alternate criteria that was supposed to be easier in the primary care setting. With a Widespread Pain Index (WPI) and a Symptom Severity (SS) score, clinicians can generate a number that helps identify whether or not a patient qualifies for a FMS diagnosis.  Worksheet here.

Take, for instance someone with tendonitis. This is painful. Long-term tendonitis can lead to sore muscles around the affected area. Pain can disrupt sleep and raise blood pressure. Extended lack of sleep can cause forgetfulness and difficulty thinking. Over an extended period of time, calcium deposits can form, which leads to additional pain.  It is very easy for someone with long-term tendonitis to get a high SS score under the 2010 criteria.  If the tendonitis is bilateral, or in multiple locations, there is also a high WPI.  The patient appears to have FMS.  Not so.

Regardless of the criteria used, one key is that the pain cannot be explained by other conditions. 

I call a fibro diagnosis, “The clinician didn’t want to take the time to figure out what’s really wrong, so slapped a label on you in hopes that you’ll quit complaining.”

Some results of pain are normal, and do not necessarily mean that the patient has FMS.

Some results of pain are normal, and do not necessarily mean that the patient has FMS.

Many conditions have symptoms similar to FMS.  The average person with ankylosing spondylitis is wrongly diagnosed with FMS seven years before an accurate diagnosis is finally made.  Perhaps earlier diagnosis and treatment would delay fusing of the spine.  The spondyloarthropathies have symptoms quite similar to FMS, as do rheumatoid arthritis, lupus, hypothyroidism, polymyalgia rheumatica, plus tendonitis and bursitis in multiple joints.

In the realm of anecdotes, I know three individuals diagnosed with fibro (in addition to the person mentioned above).  They were treated as mental cases, and their physical symptoms discounted. For years they suffered needlessly. They nearly died before someone finally figured out that they had heart disease.  Treatment by cardiologists relieved all “fibro” symptoms.  Heart disease symptoms are different in women than in men, and are apparently sometimes mistaken for fibro.

Accurate diagnosis is critical.

It is possible for those with autoimmune diseases to be diagnosed with FMS, but I believe far more often than is appropriate.  It is important to recognize that RA, PsA, SLE, and other similar diseases can attack all connective tissues. Tendonitis and bursitis are common, and it is well-documented that over time they can cause muscle pain.  Interestingly enough, some of the treatments for FMS are also treatments for tendonitis and bursitis.

Other treatments for FMS involve giving patients so many drugs that they are too numb and disoriented to notice the pain: Lyrica and Neurontin affect the nerves; both can be used to treat neuropathy (which is often caused by diabetes but can also be caused by RA, PsA, SLE, etc. – might this explain the numbness and tingling that some people report with “FMS”?), Cymbalta, Savella, Elavil, and Effexor are antidepressants (important when your symptoms aren’t being taken seriously). Flexeril is a muscle relaxant related to the tricyclic antidepressants.  Tramadol, a pain medication, is sometimes prescribed, but other narcotics are thought to increase pain sensitivity in fibro patients so should be avoided.  Patients would prefer treating the underlying cause of their pain, rather than medicating the symptoms.

Fibromyalgia is widespread pain of unknown origin.  It is not to be confused with heart disease, tendonitis, bursitis, or comorbidities of any form of arthritis; in these cases, the origin of the pain is known and needs to be addressed.

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11 thoughts on “Fibro

  1. This sounds very familiar of the time when I was first diagnosed in 1970 – especially for women. They weren’t taken seriously, just considered to be imagining it. Yet a man would go in with the same symptoms and that doctor was johnny-on-the-spot to help. I was fortunate to be diagnosed with RA the first time I went in with pain – times don’t always seem to get better in some areas.

  2. I have fibromyalgia in addition to RA. It is not pleasant and it really adds up. There are a whole lot of misconceptions are fibromyalgia and even the medical community shrugs off the diagnosis. I often wonder about the point you make about how they come across a diagnosis. If doctors cannot figure something out, after a while they say “fibro.” Honestly, I am not sure I buy the fibro diagnosis but it is what it is. Although, I am not sure that I believe it to be associated with another condition or mistaken for another condition. I wonder whether there is more to it than the symptoms that go along with it. I think that doctors are missing the point when they say this is what is wrong and let’s treat the symptoms. If we understood what was actually going on, then we could offer better answers and better treatment options.

    • The 1990 criteria for diagnosis involves first ruling out another cause. It wasn’t intended to be a diagnosis, but a way of grouping patients for further study. Criteria involves a tender points test – link in the article to a diagram of the specific points they press on. If the patient experiences pain when a “normal” person would just find the pressure annoying, it’s considered fibro. 11/18 of tender points are required for a fibro diagnosis AND there must be muscle pain in all four quadrants (ie both legs and both arms). There’s a link in the article for 2010 simplified criteria, but this does not replace the other criteria, just make it easier for those in primary care to diagnose without doing a tender-points test; it still requires that the pain not be explained by another condition.

      There is also a link between chronic fatigue syndrome and FMS, which makes perfect sense when we realize that long-term lack of sleep can lead to muscle pain. I’ve read a few thing suggesting a possible link between CFS and an illness (ie influenza or lyme disease) from which the person never fully recovers. It is my belief that eventually, science will show that every person diagnosed with FMS really has something else instead.

      Every RA patient who’s diagnosed with fibro should (imo) be asking why they aren’t being referred to PT for treatment of tendonitis and/or bursitis. Prednisone can help with tendonitis/bursitis symptoms, but nobody suggestes it’s appropriate treatment for FMS, so that would seem to be a pretty good test of what’s involved. Best of luck getting better treatment to resolve your symptoms :)

  3. My rheumatologist diagnosed me with fibro last summer. Clinically, my RA is “under control,” but I continue to experience moderate pain in various joints. I also have the comorbitity, bursitis, in my hips. My doc told me the pain was from fibromyalgia, and that was that. I don’t accept it, and while I do like my doc, I was disappointed in him. I’d rather be told that while my RA is under control (not progressing in terms of joint damage, etc), it can still cause symptoms that can only be treated with time, patience and, if necessary, pain medication. I believe that’s what’s really going on, anyway.

    I hope that medical scientists continue researching “fibro” and find out, soon, what’s really going on in those who have such symptoms. It’s cruel to treat them so dismissively, and as you said, could cause them real harm.

    By the way: I love the new look!

    • Thank you :) I have more changes in mind, but will do them gradually.

      I don’t understand how your rheumy can say that your RA is under control when you have bilateral bursitis. Not everything shows up in labwork. Bilateral = systemic disease. Fibro is not a disease. If your pain is only in muscles surrounding your hips, you’re not in all four quadrants, so it’s not fibro. If you have pain in your arms, too, maybe there’s bursitis/tendonitis in your shoulders/elbows/wrists – that would account for any arm pain. I am angry for you, that your doctor would blow you off instead of finding a way to treat your bursitis effectively.

  4. I was diagnosed with fibro before my doctor figured out that it was really RA. I was thinking the other day that the general public probably has a better understanding of FM than RA because of the onslaught of commercials that list all of the symptoms. The marketing of this free floating condition must be very lucrative.

      • I wasn’t too bothered by my Rheumatologist mistaken diagnosis. I was seronegative and this was many years ago. He realized his mistake pretty quickly and he apologized. He then treated my ra very aggressively. How many doctors do you know who acknowledge a mistake and say they are sorry. Docs aren’t perfect. I guess that’s why they call it practicing medicine. After 27 years working with my rheumatologist he is retiring. I hate the thought of finding someone new.

  5. I am in no way minimizing people’s pain. I am frustrated with clinicians who jump to a “fibro” diagnosis and use that as an excuse to discount symptoms. Some even get people hooked on painkillers instead of finding and treating the cause of the pain. RA causes tendonitis and bursitis, and over time symptoms of those conditions can appear like fibro symptoms. Every RA patient who is additionally tagged with “fibro” should get the doctor to explain how this is possible since presence of a condition explaining the pain (ie tendonitis/bursitis) automatically rules out fibromyalgia.

    People with PsA can have textbook presentation, yet normal labwork and zero skin symptoms lead to being brushed aside as “fibro” when in fact they have a real disease in need of treatment. People with AS suffer untreated for many years until after their spine has fused because doctors do not investigate enough. People with enthesitis (ERA is a type of JIA) can score 18/18 on a tender-points test, and be wrongly diagnosed with fibro because the doctor doesn’t consider ERA.

    Until a rheumatologist can clearly explain why the “not explained by other condition” criteria doesn’t apply to patients diagnosed with a condition that is documented to cause symptoms mimicking fibro, RA/PsA/AS/JIA/SLE patients need to insist on effective treatment for their tendonitis & bursitis, and respectfully request that a FMS dx be excluded from their problem list.

  6. Getting a diagnosis often does not bring any relief. I was eventually diagnosed with sarocioidosis which is officially categorized as a disease but has no known cause and is really a catch all for any kind of granuloma formation that can not be explained by another disease. There are no drugs for sarcoidosis, all the drugs we take are usually for RA or other autoimmune disease. In my particular case I have not responded to those drugs and my case has been labeled chronic and refractory. It is a fallacy perpetuated by TV and movies that once you get a diagnosis that everything will be okay. Sometimes there is no relief even with treatment.

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