Ricochet is the best place on the internet to discuss the issues of the day, either through commenting on posts or writing your own for our active and dynamic community in a fully moderated environment. In addition, the Ricochet Audio Network offers over 50 original podcasts with new episodes released every day.
Fibromyalgia: My Story and AMA
It recently came up that many people seem to know someone with Fibromyalgia. From television ads for Lyrica, to personal experiences with patients, many people have some very interesting ideas about what the syndrome is and what it is not. I would like to counter these with a personal story about my experiences with my diagnosis and disease process.
After over ten years of crippling exhaustion, abnormal (but not too abnormal) test results, and multiple different referrals to varying specialists, I found myself in the office of a Rheumatologist. This man did a physical examination and said plainly, “You have fibromyalgia.” I was prescribed different supplements, told to get some rest, and to follow up in a period of weeks. I was told to take care of myself.
I hobbled out to my car and sat in the driver’s seat. I cried.
I sobbed like someone with a cancer diagnosis. More than sad, I was angry. I was angry and I was outraged. How is it not Lupus?! How is it not something actually real and treatable?!
I still wish it was Lupus.
What is Past Is Simple Medical History
At age 23, I had my daughter. I was a single mother. My mother had cancer. Stressful, sure, but not so stressful that it was insurmountable. I struggled to make a family with my daughter’s father. Slowly, his behavior changed. Still supportive, but more distant all the time, his behavior became more and more erratic. Understanding the pressure for a new family, I provided distance. This distance gave him more room for his infidelity. We broke up within 6 months of our daughter’s birth. I was exhausted by the stress and ongoing custody nonsense. It was physically and emotionally taxing, but I trudged on. My ex had a new girlfriend who was very interested in usurping my position as mother… I tolerated it. I cried, I complained to my friends, I went out, I went to the gym. I did all of the things they suggest you do. I ate right, I exercised, I went out with friends. I spent time with family.
I was exhausted.
Eventually, heartbreak healed, new love dawned for me and I spent almost 5 years with someone where the very existence of the relationship was always in question. This was stressful, but nothing unusual for me. My mom had cancer two more times and was diagnosed with a progressive inflammatory neurological disease.
In the midst of living, my new boyfriend encouraged me to consider my career options and I returned to nursing school. I began and completed nursing school. Every semester there was a crisis; some new stupidity with custody, my daughter’s grandmother misbehaving and attempting to feed her food she was allergic to. There was always something.
But all of this was the stress of living; the stress of life as I know it.
I began therapy at the health center for the stress of being in nursing school. I went for a safe place to vent and to learn new techniques. Every nursing student eventually went there in a tight ball of tension, so I found myself in good company. I was always exhausted, bone tired, and able to sleep at the drop of a hat. I was diagnosed with depression. Why shouldn’t I be depressed? I checked off the boxes: tired, under stress, weight gain, hypersomnia (sleeping too much). I was also tested for hypothyroidism which runs in my family. I was told that all of my blood work was normal. Normal, normal, normal.
Eventually, I graduated nursing school on the Dean’s List with multiple scholarships. I earned a position as a new graduate nurse working nights on my desired unit. Despite a long drawn out breakup that did more harm than necessary, life was more positive for me. I was gaining more and more independence, but I was still exhausted. In this time, I managed to lose over 50 pounds and became an avid runner. I began dating again.
But I was still exhausted. Any extra time I had was spent sleeping or in acquisition of caffeine.
I developed crippling shin splints. My shins were so inflamed, that they were pink and heat could be felt radiating off them from over 4 inches away. I was put on COX-inhibitors. I was told that I could no longer run. Period.
I was still exhausted.
It was always the same excuse. Stress. It is stress. Since 2003, I have been told a variation of the following: “Of course you’re exhausted! You have (a new baby, a toddler, started school, are in nursing school, a new job, started working night shift, gone through a break up, have a school-age child, etc)!” Over 10 years, I heard some variation of the excuse. Finally, I found a decent doctor who listened to me and the battery of tests began.
Testing, Testing
My labs began changing. I was no longer an exhausted 20-something. Now I was an exhausted 30 something. The hormone tests began and were rerun. The leader for my clinical problems was Polycystic Ovarian Syndrome, but I did not meet criteria. My hormone levels were too normal and upon ultrasound, my ovaries were normal. We began looking at more rare syndromes and processes, but my labs were all too normal. I began to have increased gastric problems. My food stopped digesting. I began taking medications three times a day to make my stomach actually work and to reduce nausea. I visited a doctor and had an upper endoscopy. Despite never having a problem with acid or reflux, I was discovered to have redness and swelling across all of my upper GI tract.
I did not receive a diagnosis at this point; I was simply told that I should probably start taking Nexium to reduce the stomach pain and the redness. It was apparently some sort of GERD. There was little follow up. The GI doctor determined there was nothing else for them to do.
I was still exhausted. I was exhausted and my food allergies increased. As a part of the larger barrage, I received allergy testing (both blood assay and skin testing) and discovered that my food allergies had been retained and further increased. I was reacting more severely to old allergies and had developed new ones. Now allergic to wheat, soy, and almonds, I was put on a delightful elimination diet. I was able to eat plain potato, plain white rice, plain chicken and plain beef. I was on this diet for ever 2 weeks. I stopped eating in protest. Life without coffee was untenable.
I managed to have a sleep study. The weight gain beyond what I had originally weighed troubled my doctor. I have always snored and there was a risk that all of this could be solved with a simple CPAP mask.
After one night, it was determined that I had no sleep apnea. My sleeping was completely normal.
None of these discoveries explained my primary complaint of exhaustion. Just walking up one flight of stairs would leave my muscles burning and twitching. I was found to be mildly anemic: I was anemic enough that for the first time in my life I no longer qualified to donate blood. My iron levels were found to be low. My vitamin D3 levels were also low, I was encouraged to start supplements.
I did.
One day, I woke up and could barely get out of bed. Beyond the daily pain of waking, feeling like I had been hit by a truck, aching all over, I simply could not make my muscles cooperate enough to get out of bed.
I was referred to a couple of Rheumatologists: one for an initial opinion and the other for a second.
Despite having certain positive autoimmune markers tracked and rising every 6 months, the tests were not sufficiently abnormal as to constitute a reason for alarm.
It’s Never Lupus
As House, MD likes to say, “It’s never Lupus.”
It wasn’t. At least, I still do not meet criteria for an official diagnosis. My neurological and autoimmune issues are such that they are not bad enough at this point to constitute any diagnosis other than Fibromyalgia.
Diagnosis is composed of:
| 1. Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms:
a. Fatigue b. Waking unrefreshed c. Cognitive (memory or thought) problems Plus number of other general physical symptoms |
||
| 2. Symptoms lasting at least three months at a similar level | ||
| 3. No other health problem that would explain the pain and other symptoms |
Source: American College of Rheumatology, 2010 – See more at: http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia#sthash.V1KoqkoW.dpuf
This was in no way reassuring. As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis. All different types of pain, mobility, strength, locations of pain can all fall under the vague and useless umbrella of “fibromyalgia”.
Even less reassuring was the treatment plan I was offered. I was told that therapy might help, diet and exercise (ha!) might help, but there was little to be done in terms of medication management. Two medications were approved for Fibromyalgia: Cymbalta and Lyrica. I was already taking a high dose of Cymbalta with no real positive effect on any symptoms. I wanted to stop taking it, but after one day off the medication and experiencing some of the discontinuation syndrome, I decided I would rather avoid it.
About 3 years post diagnosis, I’m still here and I’m still angry. I am a neuroscience nurse by training with specialties in public health, stroke, and neuroscience. I spend my waking free time on Ricochet and looking up information on Fibromyalgia research.
Your turn. Ask me anything about this.
Published in Healthcare
My own health problems were….exotic….early in life. I recall at least one doctor telling me I consumed more medical services at in my twenties than most people will their entire lives. The details of my conditions are irrelevant, but I understand your frustration with having a non-specific diagnosis with metaphysical precision.
What finally got me squared away was working with the Mayo Clinic for about a year after dealing with legions of local doctors for ages. Mayo never gave up. It took us awhile to finally pin down what the issue was, but they finally figured it out and they gave me my life back.
One of the advantages of Mayo was the centralized record keeping system so you can see many different doctors with different specializations and you don’t have to suffer through the dreaded medical record kabuki dance. You also have access to a bunch of different specialities where your primary doctor at Mayo can referrer you over to work on some hunch or another. In my case, I essentially had a neurological type situation that was dealt with by Mayo’s chief of vascular surgery resolving through a couple pretty substantial operations.
I don’t know if you’ve been seen by one of these types of institutions, but I suspect the training model is similar to what you did as a nurse. They generally send in some resident at some place in their training cycle to see you and then the consultant comes to see you afterwards. I remember at least one incident towards the end of my treatment when we have everything finally figured out, where my surgeon just told the resident to just listen to me walk him through everything. I think I could have lectured on my condition at that point and the staff there clearly agreed.
One of my take aways from all of that was when you are in a bind like that or just have something very serious that you’re dealing with is to work with a specialist with an intellectual interest in your area who is either at a center of excellence or was the product of one.
I don’t know if any of this is of any value to you. I’m very familiar with “junk diagnosis” since I lived under one for years so I’m very sympathetic to your struggle.
Thanks for taking the time for posting all of this.
It seems that you’ve exhausted most (all?) of the conventional medicine avenues. Have you tried any alternative approaches such as consulting a good (and I emphasize the word “good”) natropath and/or osteopath? Conventional medicine is fantastic (I’d be dead without it), but it doesn’t have all of the answers. I hope that you are successful in finding a cause and ultimately a resolution for your illness.
As a therapist, I totally, totally get our reaction to that diagnosis. Ugh.
I do think that what we have that we call fibromyalgia is a cluster effect that has more than one cause, and we lump it into a syndrome and give it a name.
I had symptoms similar throughout my life. I have scoliosis and my nervous system is so sensitive that a massage or traditional chiropractic sends it into overdrive. Chiropractic with the Activator Method has been a life saver-try it just for a check up and pain relief.
I suffer body pain mimicking fibromyalgia, gastro misery and irregular heartbeat from soy, wheat and dairy. Eliminate these. I discovered the food allergies on my own because no medical professional cited them.
I’m sorry you have suffered so much – it’s amazing that you have become a nurse while pushing through all that. You have had so much stress with relationships. Find some peace by distancing yourself from unhealthy relationships. I even read a story where someone was so allergic to wheat it was the primary cause of their depression. Since your system is often inflamed, ingesting energy boosters through liquid like EmergenC, B vitamin cocktails including B12 might help. Have you ever heard the story of Jordan Rubin who cured himself of Crohn’s Disease? He had no answers from doctors either. You could also have a candida yeast issue.
https://www.bodybiotics.com/Townsend_JordanRubinStory.php
Dr. Mercola’s site is a good research source. I learned about soy here.
http://www.mercola.com/
God bless you nurse – I am saying prayers that your health be restored.
I know this sounds weird by try taking a table spoon of honey,morning , afternoon and before you go to bed. Adjust if you are still working nights. Try it for a month ,what do you have to lose. You can get a large can at Trader Joe’s for about$12 bucks. Hope you feel better.
I’ve suffered Fibromyalgia since 1994. It was triggered by a lasersurgery on a disc. I’m still angry too. All my doctor can do is help control the pain with drugs. It has robbed me of most of my love of life. As the years pass it gets worse. Until they figure out what causes it, I don’t see how they can properly treat it. From best I can tell it’s a central nervous system disease. We cope, that is about all I can say. This disease has warn me out. You are not alone.
I simply can’t imagine the resilience and courage it must take for you each day, TRN. I have nothing to offer but prayers.
Hi RightNurse. Thanks for the great post.
My lovely bride shares a similar story. She too was an RN. And as a health care professional is immensely frustrated by the lack of a definitive diagnosis. Her pain can, at times, be absolutely debilitating…and she has a VERY high threshold indeed:
(1) She was a Lamaze Mom, delivering both our children without so much as an aspirin.
(2) When our son was in high school playing baseball she once had the misfortune to get hit – in the face -with a foul ball. One of our son’s teammates later commented : Oh my God, your Mom is tough as nails! My Mom would have been in the hospital for days. Your Mom never even cried!!!
(3) She’s been married to me for 32 years.
So when she is in tears and says she is in pain … It’s REAL and it’s BAD.
I wish there were words … But there aren’t. You know well it’s a daily grind. Good luck and God Bless.
“This was in no way reassuring. As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women.” My first experience with fibromyalgia as a nurse was working in an Urgent Care in 1993. A middle-aged woman came in screaming in pain demanding narcotics. None of us nurses had ever heard of the condition, and our young doctor had to call the on call neurologist. We had nothing to help her as we did not give narcs for anything short of broken bones. I felt so completely helpless as I genuinely could see this woman was in real pain. There is no moral to this story, just sharing my experience.
Again, just offering something if it hasn’t been tried, but my chiropractor has many fibro patients. I remember one woman was in tears at the counter, as she was getting ready to go on vacation and was miserable – she had no appt. and they took her in. Just adjusting so the nerves and muscles can relax, and the signals through which the nervous system sends pain signals are helped by this. Again, I can’t tolerate traditional but the Activator Method works wonders. They are also schooled in natural remedies – that can help with pain or lack of energy. I can’t escape inflammation from wheat, the joint pain is so bad. My new neighbor is also same, plus arthritis. She’s only in her 50’s too.
And add the apple cider vinegar:
http://www.rd.com/health/wellness/apple-cider-vinegar-benefits/
Dr. Bronner’s brand sold at Walmart for a few bucks.
About ten years ago, my son was an aide to one of our representatives at the Boston state house, and one day my son brought home a CD made by a doctor in North Carolina who was making the case for more aggressive treatment of Lyme disease. His CD consisted of his summary of his work on the diseases he believed were being carried by ticks and mosquitoes. He had a diagram in one shot of a tick with lines to eight nervous system diseases and disorders: dementia was one, Alzheimer’s was another, and multiple sclerosis (MS) was another. The causes of these diseases were (and probably still are) a mystery. The doctor has been shunned by the AMA (I forget why), but in the time that elapsed between when he started his research and a few years ago, the medical community and the insurance companies have changed to treating Lyme disease earlier and for longer time periods. He was certainly right about that.
The other thing that is significant is the number of chemicals, especially heavy metals, that are in the human environment. It makes diagnosis very complicated. I remember when the sick building syndrome first appeared, the medical community was skeptical.
I would hope that computers will enable medical researchers to gather more information about diseases and plot their occurrence by geography and other factors. There is a new exciting television show this year–Pure Genius–that revolves around that idea.
Pain tolerance is such a funny thing. I worry that having a high tolerance for acute but transient pain (like childbirth or injuries one is expected to completely recover from) is no guarantee for having good tolerance of much lower-level pain that… could… never… go… away…
People sometimes sling around the phrase “hedonic adaptation” – this theory that our long-term happiness is not affected much by either permanent gain or permanent loss, which means those crippled or in chronic pain should nonetheless be expected to return to a normal level of happiness, and if they don’t, there’s something wrong with them, not with their pain. Only, there’s increasing evidence that this is not true: chronic impairments that are very clearly not psychosomatic nonetheless carry with them higher risk for suicide and so forth.
What pain is supposed to mean is apparently very important to how we perceive it, and this perception is not directly under our conscious control. Sometimes I wonder if some of us get “broken” from pain that seems to have no normal meaning – we’ll “heroically” tough out childbirth, show up to the ER walking on serious injuries “it shouldn’t be possible to walk on”, but we can still seem like “weaklings” when the pain is more pedestrian… as if our bodies just have no idea “which way is up” on the pain scale anymore. Pain is supposed to mean something, it’s morally important that it mean something, but dammit, it doesn’t!
Yeah. Over my 30 years of ER I’ve come to conclude there are 2 groups of patients with fibromyalgia.
The first, much larger group are generally middle aged or older women who are depressed. They frequently have the rest of the “Terrible Triad” as well, Migraines and IBS . A smaller group, generally younger seem to have some as yet undefined process which seems to be autoimmune. I’ve seen a number of patients eventually end up with a solid Rheumatologic diagnosis eventually (although it can take years).
Wow. I guess I owe you twenty dollars.
An ongoing dilemma; as is that of perceived helplessness/ineffectuality, no?
This tends to be more of the issue. With insurance being what it is and having only a HMO, there are gatekeepers to care. In order to get a specialist, specialist, specialist, I have to see and “fail” a specialist and a second opinion. Additionally, I will require various insurance petitions in order to override their recommendations. The fact that I am now overweight/obese impacts this as they are more likely to explain it as a hormonal side effect of being fat (which is another excuse that has been used).
Much of this comes down to having a good doctor: with a doctor that believes you, doors can be opened. They can advocate for people who are otherwise perhaps too tired to manage their own care. They can ensure that tests get done, specialists get approved, and something happens. Without a good doctor (or in my case, a doctor at all!), there is no movement.
You are very correct in thinking I should go to a research institute. The trick right now is to find enough that is interesting that someone would be interested in the case. Despite my neurological issues, my workup there has been minimal. Great example: I have intermittent R eye central night vision loss. Why? No one knows. They call it “migraine”.
This is another example of science explaining what anyone with two eyes can clearly see: people in chronic pain do not often go back to “normal”. They are often in pain and depressed. Their world changes, they adapt as best they can, but not all factors in life adjust so smoothly. We have all seen it. It is insane to think that after a devastation life should go back to normal; chronic pain is, in fact, a devastation and a loss.
Who pays attention to “normal”, in that sense, anyway? Isn’t every day a ‘new normal’? (Trying this one on for size, myself…I knew that BA in Psych would be good for something, someday.) (-:
I think there is a strain in American conservatism that does.
I think the most difficult thing is knowing that nerve pain has no good acute medication. There is gabapentin for longer term management, but it does not work instantly. My mom has trigeminal neuralgia and her nerve pain can be unbearable. It is hard to watch because opiates simply do not work. The only thing that they do is make you apathetic to the pain or perhaps sedated enough to sleep. Until there is a solution for nerve pain, there will be problems with opiate use in this country.
I should have asked for more!
I know, @midge; one that I choose to discount; as I do the ‘muscular Christianity’ of the 19th-century…Until it hits close to home, you can subscribe to the ‘bootstraps’ analogy…When it hits home, not so much…Unless ya have buddies who’ve got yer back, and are there to remind you that even the little you can do – whatever it is – even if it changes from day to day – is enough.
I know some who started with random rheumatic stuff when they were young, wrote it off at the time, and then later did end up with stuff like IBS (perhaps in some cases from chronic NSAID use in order to keep moving). It seems to me in this case, all that may differ for these folks is the time at which their complaints were first heard (young enough, and it’s not the “terrible triad”, tough it out long enough, and it is).
How clearly separable are these groups, really?
(Additionally, if even the very elderly find it humiliating and depressing to “regress to using diapers”, wouldn’t the same be true of middle-aged adults? Even if someone’s “bathroom issues” had a psychosomatic cause, having to arrange one’s life around toileting troubles does sound hella depressing, especially if there seems to be no real “reason” for it.)
Not add to your problems, but that’s a classic symptom of Optic Neuritis, which can be the precursor to MS…
I know that reaction well, as a wise nurse, my best friend – who happened by God’s Providence – to be my Mom said to me: [paraphrasing],
Briefs are a tool that meets a need: no more, no less…Caring for – and about – yourself means using what’s needed, as needed…They’ve saved me any amount of grief away from home. And these days, they’re so discreet in the wearing, no one who doesn’t need to know has to…Just sayin’…
Keep on keepin’ it real!
I understand your frustration. After several years of puzzling health problems and doctor visits, I finally have answers. I have systemic nickel allergy syndrome (SNAS), as well as small intestine bacterial overgrowth (SIBO). Both are newly discovered conditions, and I believe many woman are misdiagnosed with fibromyalgia, irritable bowel, migraine, etc.
I am currently 51 years old, and I had braces four years ago and was allergic to them without knowing it. I had pierced ears as a child and always had trouble with them, but never knew it was nickel allergy. My symptoms included vertigo, rash, irritable bowel, extreme thirst, burning tongue, diminished taste, fatigue, neutropenia, and other assorted problems.
I am now on a low-nickel diet and a low FODMAPS diet, which has really helped. I wear gloves and avoid touching metal as much as I can. I am also doing experimental nickel ingestion therapy with my doctor; European scientists are trying it with patients and are having some success.
Perhaps you can research these conditions and see if anything relates to you. I believe nickel allergy is huge problem with many people, and I hope it will become a topic of serious research within the United States very soon.
Yes. See above about my mom. I immediately went to my optometrist and have yet to be referred to the Neuro-opthamologist. Neurology doesn’t know, my eye doctor doesn’t know. They guess it’s a migraine since it comes and goes and there’s apparently no neuritis. I have also had a retinal scan (see plaquenil use) and everything seems good. At this point. But yes, my mom had many of these symptoms before she was diagnosed in her 50’s. She had most in her 20-30’s but had dismissed all of them. I can’t! I have a neuro specialty!
Praying for you, by the way.
Me, too; the chaplain-panda is “on this” for all on the thread….