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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
Wow, that’s fascinating. How did they determine the allergy? Did you have a panel or skin testing? I strongly believe that SIBO is going to be implicated in more autoimmune conditions and that more conditions will be described as being based in the gut. Fecal transplants will become more common. As a matter of fact, I’d absolutely do it if it were indicated! I think there’s more to the immune system than people realize and doctors are just now starting to understand the gut connection. There’s fascinating research on it.
The Gut has a lot to do with how we feel. They have linked gut bacteria is some people to depression. We know a UTI in the elderly can cause delrium. We are our whole bodies, not just our brains.
The basic nickel allergy was diagnosed through a T.R.U.E. skin test at the allergist (I am also allergic to gold and cobalt per this test), followed by an additional Type I hypersensitivity skin test done by the dermatologist for the added SNAS diagnosis. The SIBO was diagnosed through a Commonwealth Labs hydrogen breath test done by the gastroenterologist.
This is all very, very true.
I am my whole body, but mostly my brain. It’s just that my body won’t bend to the superior power of the mind.
People in my family have a similar condition. It manifests in various ways: fainting spells (grandmother), low oxygen (mother), Parkinson’s (grandfather), and ADHD (all of us). From recent research, it looks like my family has a genetic predisposition to some sort of dopamine dysfunction. Unfortunately it’s hard to say more than that; dopamine is affected by an incredible number of things, from chronic stress to the composition of your gut bacteria. That makes it resistant to any sort of medication; there are too many ways the system as a whole can adjust to cancel out any drugs.
That said, the key trigger is stress, and the key to managing that is to not live in a hostile social environment. Finding the right climate also helps; are you more comfortable in warmer or colder places, do you prefer it really hot in the summer or only somewhat hot, etc.
Fecal transplants?
Yes. It is what it sounds like. They take feces from healthy people and…transplant it into the digestive systems of unhealthy people.
I [EXPLETIVE] YOU NOT!
Well, the bacteria anyway. They sort of wash them out.
You body and mine work best together. Think about how much breathing changes your mood. Use your body to help reinforce your mind.
Gah, how Eastern that sounds, but it works.
Ummm…. no. Not really. “Thin it out with saline solution” is often all that’s done. Right now, the only approved use is for curing C diff problems, even though it’s shown promise for other stuff. So much promise that folks have started going the DIY route. (Since I know you’re into DIY, Rudert, you can find instructions here.) MIT’s Open Biome project is of course not literally open.
There are smarter and better informed people commenting regarding medical solutions; I’m not going to even try.
But now I’ll put on my mom hat (repeating something my mother said to me 1,000 times): you’re a young woman. you have a lot of years ahead of you. And your body can’t handle this much stress. Plus your looks will go. (my mom was wise AND superficial)
I had to give up long distance running when I hit 50. By happenstance, my life fell apart. In the past five years I’ve had two sons in the military, my mom developed dementia … you know what, I’m not going to list it. Suffice to say when all my hair fell out and the doc asked me if I was experiencing any stress, I simply laughed maniacally. She then asked: Can you do anything about it? I replied: Only if you murder about 27 people.
I eventually got back my hair, but developed retinal migraines (weird, no pain thank God), from that we went to heart palpitations.
Meanwhile, my dear sister has had problems that make mine look silly (except for the kid in Afghanistan).
My mom was right – the toll that stress takes on your body is horrific. But we can control the stress. To me it’s like knocking the needle out of a record groove (do you know what a record is?)
Try this: http://curestressapp.com/
There’s a rosary going your way.
Just want to give this a thumb’s up. Stress is a killer. And life today is stressful, even without extraordinary circumstances. One of my fun games is to list all the stuff I worry about that my mother never had to. It took a piece of cheesecake last week just to undo the damage that 45 minutes of dealing with Sprint had wrought.
Control what you can (your mind) and hope the medical experts know what the heck they’re doing. And make sure there’s cheesecake available for emergencies.
TRN, this is in no way a medical diagnosis, just my experience.
I’m a former rugby player and lifelong athlete. I birthed six children with midwives, four at home. But a tick bite in 2011 changed my life. The arachnid transmitted at least three diseases: Lyme, babesiosis, and erlichiosis.
The babs is super persistent, caused by a parasite in my red blood cells.
For years, I’d have some slight anemia or seem to have fine blood work but feel like a truck hit me. Then this past summer we realized that a significant part (highest was 12%) of my hemoglobin was actually bound up with carbon monoxide, the offgassing of the parasite.
Fingerclips to test blood saturation showed 99-98% oxygenation, but most fingerclips cannot tell what the hemoglobin is saturated.
A carboxyhemoglobin test showed the truth.
I believe I have a correct diagnosis, but various treatments have not cured me. I was not able to get any medical help from the conventional, insurance-will-pay-for-this crowd. In fact, my PCP had her nurse call me to tell me there was nothing more to do.
A doctor who treats tick borne illness aggressively gave me back my ability to function most of the time at a pretty high level, but I will never be the same. Some of that is likely getting older, but the constant pain and weakness, heart fluttering, and shortness of breath is a reminder of sickness and the limits of medicine.
I just want to reiterate TRN’s point here. Depression is often the default, and anti-depressants are the “answer.” Despite the lack of dysphoric emotion or anhedonia (inability to experience pleasure or enjoyment). Physics symptoms often associated with depression are often common in other diseases so things get missed.
Hugs and prayers and kudos to your ongoing efforts to provide a stable life for you and your daughter.
I presume you mean control the parts of your mind you can control! ;-P
@TheRightNurse
I am fortunate in I have two cousins that have the same problems. Besides being blood relatives we share 1. Retired nurses 2. Female 3. History of arthritis 4. IBS 5. Fibromyalgia
We give each other moral support and share medical info. Plus with three of us our families understand what we are going thru and they give support to each other.
All of us have had to deal with people who don’t realize there are invisible disability.
I have a wonderful Rheumatologist who can just look at me and know how bad the pain is.
Neil Diamond fan, I presume?
http://www.azlyrics.com/lyrics/neildiamond/iamisaid.html
They are talking about the DMV over on the main page and it reminded me of a perfect example of what I’m talking about. I have a niece who is a little high strung (her dad is a total bundle of nerves). She had a horrible experience when she went to the DMV to get her driver’s license.
I heard her tell the story at least a dozen times. And that was just me. Each time she told the story, or just thought of it, that groove in her “record” was getting dug a little bit deeper, making it easier and easier for the “needle” (her thoughts) to slip back into that groove. She was literally reliving a bad experience over and over and over. One bad experience had turned into dozens of bad experiences.
Multiply that by a few thousand over a lifetime and it’s no wonder our bodies begin to break down.
Hang in there. Medical science is still in its infancy. Hopefully, it will grow to the point where it can actually offer relief or even a cure for this most mysterious –but absolutely real disease. I know rheumatologists who hate to treat it because they can’t find the cause or the cure. It frustrates them too.
In the 1980’s, weren’t the same general set of symptoms CFS, and more common among those of a melancholic temperament, and pretty rare among the sanguines?
I have a sister-in-law who was retired on disability for years due to fibromyalgia, then the disability payments stopped as she began to collect social security at 65. She went back to work as an OR nurse.
My prayers go out to you. I hope something you learn here leads to a cure, or at least an improvement. Your post and the comments from others have given me a better understanding of the pain experienced by a longtime friend who is also suffering from fibro.
I wonder if that is why I drink so much. (I don’t remember the exact numbers, but my pain specialist told there are *8* things you can have wrong with your low back, and I have *6* of them.)
As well, one may find it helpful to decouple the notion of pain, as such, from suffering (whether large or small). Again, one I’m working on for myself.
Fibromyalgia seems to share a lot of the same treatment methods as migraine, at least in terms of the drugs used for prophylactic. I have chronic daily migraine and the effectiveness of first line drugs always wore off for me, but I’ve basically been cured by high-dose (20mg/day) calcium channel blocker amlodipine.
Have you tried any treatments like this?
Hi Mike! Yes, I have. I have migraines too and have started on propranolol 60mgER/day. It’s worked wonders for that. For Fibromyalgia, not so much. It’s more like having the aches of flu and the exhaustion perpetually. Magnesium has helped for the cramps and Vit. D for some of the other stuff, but not very much. It’s slow going.
You are a rarity! Not many men have migraine.
I don’t know about you, but my problem isn’t pain. My problem is the pseudo-pain sensation I feel has a weird paralyzing/dizzying effect. I can throw my back out and the pain from that, while of greater intensity, is much less disruptive to my life then the other feeling.
This can really confuse people, and I try not to describe the feeling as simple pain. Really and truly, the chronic pain I have is not that bad. It isn’t, which always confused people until I started explaining what I felt in terms of the dizzyness/paralyzing effect.
Hello, Joseph! Ah, the neurology of us; that topography is a very personal thing…I have experience with this: when I lean less-supported than I’m ready for, I have anxiety about falling. (It’s usually met with: “You’re not going anywhere!”) Perceptions are powerful; sharing them takes strength…I’m in awe of what you do – and how beautifully you share it with us – Thank You!
Also SIFO (Small Intestine Fungal Overgrowth)
A key quote: