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.
I'd advise against assuming that every disease must have a defined cause and pathophysiology, or its fake. It was not that long ago, in the big picture, when no infectious disease had a defined cause (before germ theory), when ulcers were known to be caused by stress (not true - Hello H Pylori), when Alzheimer's disease wad just plain senility, when type one diabetes had no known cause (insulin was discovered less than a century ago), and on and on. What we know is always a work in progress.
Specializes in MCH,NICU,NNsy,Educ,Village Nursing.
Fibro is indeed a very real medical condition. Unfortunately, primarily women are the ones who suffer from this. And, that means that often they don't receive necessary treatments or are treated with condescencion. Kudos to the OP's doc for picking up on her symptoms.
Sometimes fibro is triggered by food sensitivities. It may also go hand in hand with migraines. My daughter suffers from fibro (and, suffer is not an exaggeration either). If she's not careful about foods---milk products & beef products are her triggers--she will have a flareup that can incapacitate her for days. She also found that the meds do not really help her that much--and sometimes, that is the case.
I wish the OP and others who suffer from this disease the best. It can be a "family" disease and a great support system is key to coping successfully.
Also, in the end, the entire concept of diagnosis is just a tool, a way to organize assessment and treatment more effectively. Many patients suffer symptoms of no known cause, fitting no known diagnosis particularly well - it would be arrogant and counterproductive of us to decide, by definition, that the only diagnoses that exist, the only suffering that exists, are those we have defined and understand. Biological science still has a LOT to learn....
My husband has it. Anyone who thinks it's not a real disease needs to hang out with him when he's having real issues with it. It's awful, and he is a tough cookie. A PM&R doctor and a rheumatologist both diagnosed him with it. The rheumatologist explained it being something where the brain isn't getting the pain signals quite right, so certain sensations that are normally not painful are painful for fibro people. For him, Lyrica works and so does Savella, but the Savella has side effects he doesn't like.
Incidentally, he takes the rare Vicodin for back pain (an old very serious injury of fractured vertebrae) maybe once every few weeks to few months, and those do nothing for the fibro pain. He can distinguish the fibro pain and the pain from the old injury and doesn't take pain pills for the fibro pain.
It's hard to make some people "believe" it's real if they don't have the joy of living with it. To me, fibro is like depression where the symptoms show up in pain and tenderness rather than depressive gloom.
By the way, the fibro brain fog is frustrating, too.
I have had it for many years and even had a doctor snort at me when I told him my rheumatologist diagnosed it. and he dc'd all of my pain management medication. I fired him and went back to my old rhematologist. At one point it was so bad I couldn't stand to be hugged it just hurt too much. I take a combination of different meds and it works pretty good.
I've been living with fibromyalgia for years but was not diagnosed until about a year and a half ago. The most commonly prescribed medications had too many side effects so basically I just live with the pain and fatigue.
I have learned how to be gentle with myself and not overtax myself, especially when I'm having a flare. Sometimes it means that I am not as active as I would like to be and I don't get as much done as I'd like. I have had to readjust my career plans to accommodate my fibromyalgia. I can do desk work fairly easily but have difficulty if I need to be on the floor and on my feet much.
Having said that, I am still loathe to "come out" about my fibromyalgia because I am afraid of being judged. I've overheard my peers talk about drug seekers and "lazy" nurses, many of whom, surprise, have fibromyalgia or other chronic pain issues.
I'm sorry you're going through this, Casi. I honestly do feel your pain.
I had a Fibro patient describe the disease to me in a very clear way that made a lot of sense to me.
She said the Fibromyalgia (in her case at least) was like the body's pain mechanisms suddenly "remembering" a pain sensation and recreating it. She said she believed this, because the fibro pain areas would mimic trauma pain she had experienced in the past almost exactly.
That makes sense to me. A body's pain mechanisms suddenly get a trigger to fire. (It isn't the trauma itself that causes the pain, but the nerves triggering pain mechanisms.) The body does have memory to a certain degree - why not the nervous system?
My mother was diagnosed with Sarcoidosis last year after many different health problems. (One being chronic back pain.) After months of treatments that did not work and her pain increasing until she was having numbness in her limbs, she had several MRIs and the radiologist discovered abnormalities in her spinal cavity. My mother sent her MRI results to my aunt, who is a radiologist with alot of expertise in these areas. She saw the extent of my mothers Sarc and told her that she needed to be referred to a larger hospital with experts in neurology. My mother at the time was in a hospital in Jonesboro, Arkansas and the doctors and radiologists were actually having fights about what was wrong with her. She is now receiving treatments to have it brought under control. I have researched this disease and have found out that it will present as a different other conditions depending on where you have it. Also, a change in diet can help to bring it under control better. Recommended are organic foods and get rid of the sugar in your diet. (My mom loves to eat candy and sweets) I also have a sister in law with fibromyalgia, she has lots of sugar in her diet (like 1/4 cup of sugar in a regular cup of coffee) and has lots of flare ups. I really believe that her flareups would lessen if she ate cleaner. I hope that this gives you something to think about and research to lessen your pain and to help control your fibromyalgia.
OP, your post got picked up by Google Alerts for fibromyalgia. I'll be interested to see if you get sniped at. A recent study has 23% of doctors think fibromyalgia is a bogus diagnosis. So those of us with fibro have a bit of an issue with the medical profession.
I've had fibro for five years and have some horrible experiences with doctors and other medical professionals who don't believe in (so it's a religion?) fibromyalgia. I can't tell you how many times I wished those people would experience what I go through for just one day. It would make a difference, I think.
Here's little humor for you regarding doctors and fibromyalgia:
I am sorry you're in pain. I would suggest checking out The Fibromyalgia Network http://www.fmnetnews.com/ as a resource for things that will help you. Sleep and exercise do help. And no matter what medical professionals would like to believe, narcotics do help some of us.
I'm sure we're not getting the whole story, but I hope more diagnostics were done besides "prodding" before chronic head aches were determined to be fibromyalgia.
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"?
fibromyalgia, a common disorder, is a syndrome composed of a specific set of signs and symptoms. fibromyalgia has long been considered a "wastebasket" diagnosis. however, in 1987, the american medical association (ama) acknowledged fibromyalgia as a true illness and a potential cause of disability. many well-respected organizations, such as the ama, the national institutes of health (nih), and the world health organization (who), have accepted fibromyalgia as a legitimate clinical entity.[url=http://javascript:showcontent('active','references')][color=#004276]1 [/url]fibromyalgia is now recognized as one of many central pain-related syndromes that are common in the general population. research advances have lead to the conclusion that disturbances within the central nervous system (cns) known as central sensitization represent the most likely source. [color=#004276]2
the sequence of events that causes fibromyalgia remains unknown, but advances and discoveries may help to unravel the mysteries of this disease. research shows biochemical, metabolic, and immunoregulatory abnormalities associated with fibromyalgia. although the pathogenesis of fibromyalgia is not completely understood, the currently known abnormalities substantiate the proposal that fibromyalgia can no longer be considered a subjective pain condition. the biochemical changes seen in the cns, the low levels of serotonin, the 4-fold increase in nerve growth factor, and the elevated levels of substance p all lead to a whole-body hypersensitivity to pain and suggest that fibromyalgia may be a condition of central sensitization or of abnormal central processing of nociceptive pain input.[url=http://javascript:showcontent('active','references')][color=#004276]2 [/url]ongoing research will continue to provide a clearer picture of the pathophysiology of this complex syndrome.
substance p, the neuropeptide in spinal fluid, is a neurotransmitter that is released when axons are stimulated. increased levels of substance p increase the sensitivity of nerves to pain or heighten awareness of pain. the elevated levels in the spinal cord cause fairly normal stimuli to result in exaggerated nociception. some authors believe that neither elevated substance p levels nor low serotonin levels alone can be primary cause. instead, the dual dysfunction may be responsible for fibromyalgia.
Wow, with all the training nurses go through and still not being able to listen and believe the patient? This story makes me fairly discouraged and sad about fellow nurses. Yeah, there will be drug seekers, complainers, those who just want and need attention, but in the end, it's about the patient, not about what WE think is real or not regarding disease process.
Popwhizbangz, LPN
115 Posts
I'd advise against assuming that every disease must have a defined cause and pathophysiology, or its fake. It was not that long ago, in the big picture, when no infectious disease had a defined cause (before germ theory), when ulcers were known to be caused by stress (not true - Hello H Pylori), when Alzheimer's disease wad just plain senility, when type one diabetes had no known cause (insulin was discovered less than a century ago), and on and on. What we know is always a work in progress.