The “F” word.

Now, now… get your minds outta the gutter.

The “F” word I am referring to is Fibromyalgia.

It’s plagued my office work over the last few weeks.  It’s a diagnosis I hate. It’s difficult to tell a patient they meet the criteria for diagnosis. It’s difficult to manage and impossible to treat (for the most part).

Fibromyalgia (fibromyositis, myositis):Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues.   Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. (Source: PubMed Health)

It’s hard enough treating chronic pain, but treating widespread chronic pain, in mostly women, with our without other psychological issues is a whole entire other matter.  It’s not surprising to me that the recommended treatments include medications which also have some mood stabilizing qualities.  But how to explain that to a patient?  “Hi, you have FM.  I’m going to suggest a medication that has been used in the depressed population.”  Um … say again?  “I’m not depressed, I’m in pain.”  Most patients refuse.  Those that don’t often recognize that there is some element of mental health issue that could be playing a role.  Others are adamant that those medications are not for them and insist on being seen by yet another Rheumatologist, or Neurologist, or “pain specialist”.  These patients often have had every test imaginable – x-rays, EMG, MRI, CT.  And for the most part, the results are normal.  I can understand the patient’s frustration – but imagine what it’s like from my perspective???  I have cost the health care system money in diagnosing that there is no pathological cause of their pain.  Yet, they are still in pain.

What does one do?

Some doctors would just start the narcotics, but that’s a slippery slope and never ends well.

Conservative treatment suggests exercise, healthy diet and OTC analgesics (like Tylenol or Advil).  How does one exercise when they’re in pain?  How do you explain to these patients that their pain will get better with mild-moderate exercise?

The thing that gets me the most with Fibromyalgia is the first thing on the list as possible causes (see also: Mayo Clinic) — physical or emotional stress.   There rarely is an individual whom I’ve seen diagnosed with Fibromyalgia who doesn’t have some emotional/psychological trauma in their past. I believe it’s their subconscious way of coping.  It’s somehow easier to describe (and therefore sometimes treat) physical pain rather than emotional/psychological pain.

I am at a loss most times with how to deal with these patients.  I know they are in pain but my options are limited.  I am already beginning to resent the select few who threaten harm to themselves “if you can’t help me”.  What they fail to realize is that I am trying to help them and that sometimes, thoughts of them keep me  up at night.

7 thoughts on “The “F” word.

  1. Great post- I agree that this dx is difficult- My approach varies somehwat but usually: I refer to a Rheum I know who is good with these patients to confirm the diagnosis and offer treatment options, then see the pt back to discuss alternative/ holistic approaches, and sometimes get a referral to therapy and/or suggest acupuncture/ massage/ yoga etc. The folks who do best are the ones who are open-minded to the alt. med/ physical approach. Pts who lose weight and exercise regualrly seem to do best… but tricky to get them there sometimes.

    • Thanks for the comment.

      I find that most Rheumatologists here a) take forever to get an appointment and b) don’t want to see these patients, even for a diagnosis. It’s brutal.

  2. Perhaps that requires explanation – neuropathy that is clearly from DMII that the patient thinks is from progression if his/her MGUS into MM, obesity or lifestyle related lumbago that the patient thinks are developing lytic lesions… etc etc. Not a diagnosis that lends itself as well to malingering as does fibromyalgia, but can be exhausting and not very satisfying to care for as the physician.

    • Thank you for the specialists’ perspective. It’s a nice reminder that these difficult patients exist outside of family medicine. I mean, that it’s not just the general practitioners who have to deal with these folks. I love your blog, by the way. Thank you for posting.

  3. As an educated patient I know only too well the wall you are backed up against and how frustrating it is. I have seen the look on too many doctors faces. I don’t even mention it anymore and when its brought up to me I just shrug and say I am dealing with it. I do the exercise, meditation and I run a support group. I just want to say thank you for caring and I know its a frustrating diagnosis for you as well. I do want to suggest something and you can take it or leave it….I have a very good friend who is a vet and he is very sick and has been diagnosed FINALLY with Bartonellas. His symptoms are identical to Fibromyalgia and Lupus and other autoimmune diseases. He is a guinea pig in research but his doctor said he wouldn’t be surprised if 60% or more autoimmune illnesses will eventually be diagnosed as Bartonella. At this point it is very difficult to diagnose because as you know it is a stealth pathogen and very difficult to kill. I have been working in the animal field for my whole adult life and contracted Cat Scratch fever in the 90’s. It took awhile but I was “cured” and now he is telling me I probably wasn’t and may be a host to this day. I know I want to look into this even though I am scared of the disappointment. I am all about awareness and encourage you to look into this. There is a doctor in Maryland that is researching this as we speak.
    Thanks for listening
    Lisa

    • Thank you for your thoughts. Not too long ago, a physician-researcher believed that stomach ulcers were caused by a bacteria. So convinced was he that he swallowed a culture of the bacteria and developed an ulcer, thus proving his theory. (See: http://explorable.com/helicobacter-pylori.html)

      There is much about medicine and the pathophysiology of disease that we do not understand yet. One day I wouldn’t be surprised if FM is linked to an infectious process.

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