Being forced to rethink my views on fibromyalgia

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Specializes in LTC.

I finally dragged my butt into the doctor after a month of almost constant headaches that would occasionally get so bad I couldn't crawl out of bed. I went in with fingers crossed that my pain was something simple and stupid that would be easily fixable.

My doctor poked, prodded, and asked a few questions. Got out of me that I have sensitive spots on my body that when touched cause a lot of pain. I always thought these were completely normal, but I guess they are one of the key diagnosing symptoms of Fibromyalgia.

To me Fibromyalgia has always been synonymous with "drug seeking" or "the doctor doesn't know whats wrong with you". So here I am with a potential diagnosis of Fibromyalgia and I don't really know what to think. Part of me is stuck in the mindset that this isn't a real disease and the other part of me knows that my pain is real.

When I got home I did some research because honestly I don't know much about Fibromyalgia other than it's used to describe chronic pain. Oddly everything seems to fit. So now I am stuck battling with my own prejudices towards a disease I've been diagnosed with.

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Specializes in LTC.

I always thought back pain was a vague way to complain about nothing.

In 2001, I was diagnosed with 'Spondolylisthesis' or an unstable fracture of the spine and arthritis in my neck and tailbone region. I saw the X-Ray, it was a train wreck nothing was where it was supposed to be, I was 2 inches out alignment along the spine.

Pain everyday for the most part in my neck usually. Its been over 10 years and I still stand at work, lift heavy pts and look down at my MAR/TARs and document. I was told to quit my line of nursing then, and do what? LPNs are LTC nurses in my neck of the woods and not much else.

Funny how life can bite you in the butt.......

I hope it all works out for you and the pain is tolerable more often than unbearable. :)

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Specializes in RN, BSN, CHDN.

I agree with both of you

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Specializes in LTC, MDS, Education.

I am NOT giving medical advice. I wall just share with you that I was also dx with fibromyalgia a coulple of years ago and MD gave samples of Lyrica. All those aches and pains were nearly gone. I am still on it and the only side effect is the big bucks unless you have insurance, which I don't at the moment but MD has been giving me samples pretty regularly so I am in good shape. Anyway, it might be worth a discussion with your doc. Best of luck and please keep us posted! :nurse:

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Specializes in LTC.

Lyric is probably the next step if the gabapentin doesn't work out. Glad to hear its working though!

My poor doctor nearly got told, "but fibromyalgia isn't a real disease!"

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Specializes in Psychiatry.

My aunt has it. My drug seeking cousin started visiting her more often after our aunt was diagnosed. By listening to her describe the pain spots and the other symptoms, my cousin convinced her doctor that she had fibromyalgia. And she is now happily doped up living off the state.

This just makes it more difficult for those who actually have it to get treatment without being labeled a drug seeker.

I wish you the best.

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Specializes in psych, geriatrics.

I've often felt the irony and weirdness when I'm a patient or a family member of a patient, wondering when my advocacy and requests lead treaters to see me, perhaps, as one of 'those people' - difficult, entitled, demanding, what have you. I want what I want, need what I need, but also emphathize with the limits and demands fellow-treaters face.

Once I walked into an ER with a clavicular fracture, VERY VERY painful, and the waiting and forms just to get to any clinician, let alone any treatment, served me as a lesson about the other side of the fence. It was especially ironic because I knew full well my diagnosis and appropriate treatments, but also knew that the more I pushed that angle, the more I risked falling into the 'difficult demanding entitled' dynamic, or even the dreaded (from a patient's perspective) 'drug-seeker' label. It all worked out, and the staff were great, but I'll never forget the vulnerability and powerlessness, NEEDING that pain med so much I almost cried, thought for sure I would, and knowing full well that my wait might be short or long, largely for reasons completely out of my control.

Another tough issue you raised - we know patients sometimes lie and/or seek to misuse the system (they're people, after all), but we also know that many symptoms, like pain, are difficult or impossible to corroborate objectively. Over time I've become more humble with these decisions - I certainly have hunches in individual cases, but I try to remain aware of the uncertainty, and often defer to patients wishes, for multiple other reasons:

1) Often the med requested, even if misuse is possible, is relatively safe/harmless, esp in a controlled inpatient setting where we can monitor for ill-effects

2) Arguments drive wedges between people, and you pay a price in lessened cooperation even if you may be in the right on the facts

3) Sometimes I can steer folks towards more appropriate use of care over time with diplomacy than I would with a blunter approach.

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I dont doubt your pain at all but Fibromyalgia isnt a disease is it? Isnt it just another name Dr made up for "I dont know whats wrong with you." If Im wrong correct me. What exactly is the cause of "fibromyalgia"?

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I dont doubt your pain at all but Fibromyalgia isnt a disease is it? Isnt it just another name Dr made up for "I dont know whats wrong with you." If Im wrong correct me. What exactly is the cause of "fibromyalgia"?

They don't know for sure. It is thought to be caused by overactive nerves or something like that?

All I know is that the pain for these people is real(minus the drug seekers- they suffer a different type of pain), and that's what matters.

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I felt the same way about depression. I thought it was just people coping poorly with their problems until I was diagnosed with it in 2007. Now, it's 4 years later and I'm happily medicated and feeling great. Best wishes to you, OP!!

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Specializes in ER/ICU/STICU.

You can always get a second opinion, maybe from a pain management doctor that deals with fibromyalgia patients.

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Absolutely Fibromyalgia is a "real" disease. And its sad that one has to have a personal experience with something to understand. There has been a lot of research and a lot of theories about it over the years. Because we don't know it's exact cause doens't make it any less of a disease. And personally and professionally --I hate the term "drug seeker"! There is a difference. Is a person having no pain and they are actually getting HIGH from med or is a person addicted to being free of pain--or close to it. If that is the case that is not seeking-- yeah so they are seeking to get treatment for their pain. They should not be made to feel bad for that. That is human nature. No one likes to be in pain. That is my thought speaking as a nurse who has worked with adicts in a detox setting and also a nurse who has chronic pain. I was told years and years ago that I had Fibro--I UN diagnosed myself. After some tests I found out I have arthritis and disk degeneration in my c-spine--this is what causes me so many headaches and shoulder pain and neck and back pain. Maybe I have fibro maybe I don't. Whatever. But chronic pain is pain--whatever the diagnosis and when a pt tells us they have pain--nursing 101. Pain is subjective. Fibro is real. We tend to be a society that needs to "see" the proof of something to believe its true. Just because a person with this disease may look fine--often they feel like they got hit by a truck!!!

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