A few days ago, Lacey posted a question on one of the fibro support groups on Facebook:

I’m just wondering besides fibromyalgia what is everyone’s other diagnoses?

Good question.  Here are a few statistics I took from the responses:

• 126 responses
• 213 different diagnoses other than fibromyalgia
• 749 total mentions of each diagnosis

This gives each person who responded to Lacey’s question an average of about 6 diagnoses each.  I took the diagnoses and grouped them into 37 categories so they would be more manageable.  As always, I’m not a doctor, so there could be inaccuracies and nuances I just wouldn’t know about.  One of the categories is “miscellaneous” – these are diagnoses that are mentioned 2 or fewer times.  The top 10 results are:

The different diagnoses can be looked at in a different way too, besides frequency:

• possible trigger for fibromyalgia symptoms (t)
• possible consequence of fibromyalgia (c)
• possible primary diagnosis, making fibro a secondary diagnosis (p)

Reading through the responses was overwhelming.  I often wondered how it’s even possible to give a fibro diagnosis with so many other painful diagnoses people have to deal with.  In addition, it struck me how many of these additional diagnoses are also not “curable,” but rather they are also chronic pain disorders that can at best be managed.  As always the thought goes through my head, if there was just one of these diagnoses that could be “cured” to make all the other symptoms just go away.  A momentary flight of fancy…

I’m still working on this incredible list, looking for patterns.  I always think fibro is like a complex code that just needs to be broken or a puzzle scattered all over the floor.  These additional diagnoses could be parts of the puzzle, and I think it would be interesting to take a closer look.

Hello Japan.  Thank you for looking in!

Fibro flares are commonplace.  Pain levels can hold steady for months and then the smallest thing can happen – a terrible day at work, a fight with a significant other, a weather change, a twisted ankle… Or something big – losing your job, a divorce, a storm, a broken leg…. And your body says, no.  There’s a fine line, however, between a flare and an actual medical emergency.  One of the most difficult things for fibro patients is to know the difference.  The second most difficult thing is to ask for help when you’re pretty sure what you’re feeling isn’t actually a flare but something to pay attention to because what if it is just a flare and you get that sinking feeling – you’ve wasted time and money… for nothing.

Flares, I think, happen not just during acute stress (injury – psychological or physical) but they can also happen before a medical problem becomes acute, almost like a warning alarm.  Several months after I was first diagnosed with fibromyalgia, I landed in the hospital with a massive pulmonary embolism.  A few months before I woke up on the bathroom floor, I had a terrible flare up of fibro symptoms, but I ignored them as “just” fibro symptoms.  At the same time, I ignored symptoms of the pulmonary embolism.  This morning, I was in the Emergency Department with a sharp pain in my side.  I’ve had extensive testing on similar pains that have all come up as nothing, zero, nada.  I was on my way to work and swerved into the ED instead, just in case.

This past week I’ve been fighting a fibro flare, exhaustion, flu-like aches from head to toe, headaches, swollen hands and feet, painful joints, shooting muscle pains, the whole works.  Today, I find out I have a UTI that has gone into (or is on its way into) my right kidney.  I haven’t had any UTI symptoms until the pain in my back, but I have had this massive flare.

Letting my thoughts ramble then: what if fibro flares (or some of them) are actually the equivalent of flu-aches, the body fighting off what it perceives as an infection?  What exactly causes aches with a flu bug?  I wonder if whatever causes aches when you have a flu also runs rampant in fibro patients? I have no idea…

Today my right elbow feels great.  My hair doesn’t hurt.  My eyelids are doing well, as are my ear lobes.  My eyebrows are topnotch!  My toe- and fingernails are splendid, although I could use a mani-pedi.  I’m sitting up in my desk at work, and I’m working….  I have a wonderful son and daughter-in-law, loving parents, a beautiful niece, and a guy who thinks I’m terrific, as well as two tremendous furry pals waiting for me to get home.

Sometimes, it’s good to take stock.

After hearing a few people mention being diagnosed with fibromyalgia after being treated for Lyme disease, I started looking for articles about studies that explore any connections between the two (see library by subject under Lyme Disease).  A few questions had come to mind:

1. Could a bacterial infection be a trigger for fibromyalgia?  Viruses, such as Epstein-Barr, have been explored, but I have not heard much about bacterial causes.
2. Are similar neurological systems affected?
3. In Lyme disease, are pain processing systems altered?
4. Can the treatment for Lyme disease be a trigger for fibromyalgia?

So far the most interesting thing about looking at “chronic Lyme disease” and fibromyalgia side-by-side is the description of symptoms – chronic pain, fatigue, neurocognitive and behavioral symptoms (memory and concentration symptoms), neurologic and rheumatologic disease (see Lantos in Library by Subject).  Anyone with fibromyalgia will recognize these symptoms, but it’s actually a description of “chronic Lyme disease.”  The problem is, most doctors (apparently) don’t believe there is such a thing as “chronic Lyme disease” because there is no evidence of Lyme disease in blood tests.

Researchers are still trying to define what exactly is happening to some patients after they are treated for Lyme disease.  While physicians refute “chronic Lyme disease,” they don’t seem to have the same reservations about “post-Lyme disease symptoms,” which are essentially the same as above: chronic pain, headache, neck and backache, fatigue, irritability, cognitive dysfunction.  I am having a very hard time understanding the difference between these two except that people with diagnosed “chronic Lyme disease” are sometimes prescribed long term antibiotic treatment which, according to several studies, are not only not effective, but dangerous, causing a high percentage of thromboembolic events and drug-induced gallbladder disease, severe allergic reactions, and line sepsis (since much of the antibiotic therapy was intravenous).  The results of extended antibiotic therapy were no different from the results of placebo therapy in these patients, so the risks far outweighed the benefits.

My question then becomes: Are physicians diagnosing people who have had Lyme disease with fibromyalgia as a last resort, given the controversy over whether “chronic Lyme disease” is an actual thing and given the identical nature of the symptoms.  Either way, it doesn’t sound like there’s a cure for “chronic Lyme disease” or “post-Lyme disease symptoms,” just like fibromyalgia…at least so far.

It’s said that the Inuit have hundreds of words for snow.  It’s a myth unfortunately. Wouldn’t it be wonderful if they really could describe snow so exquisitely?  Most everybody I know calls it either snow or “that white shit” (pardon the language), depending on how much snowmobiling they do.  That got me thinking.  I think I could come up with 100 different types of pain, but they’re all just called “pain.”  Boring!  People with fibromyalgia need to come up with their own pain vocabulary, and I don’t mean just adjectives to modify the word pain – I mean actual words for different types of pain.

A random, acute shooting pain could be called a “shmort.”  As in: I have had a shmort in my foot every time I take a step today.  The overall, flu-like achy pain that you get when you overdo it could be “bluhgrup.”  The pain you get when you first stand up after sitting too long – how about flamprim?  There’s a pain I’ve only been able to describe as “white-noise” pain because it’s always in the background even if you’re not completely aware of it, very low level pain that really only exhausts you.  Maybe “winnip”?  My winnip is really wiping me out today.  Should we start a pain glossary, and see how many different ways we can name the pain?

People with “normal” pain levels probably don’t understand the different variations of pain.  When I’ve had any procedure done, the nurses will sort of cluck over me and say, “I know it hurts – you’re doing really well.” At which point I say, “I have no problem with pain that I know is going away.  It’s the pain I know won’t go away is what I have trouble with.”  Even that subtlety can be lost on someone who has not experienced chronic pain.  Maybe a glossary can help….

A shout out to Portugal – thanks for taking a peek!

More responses to yesterday’s question about what doctors have told us about possible causes for fibromyalgia have been coming in today: trauma and stress, lyme disease, multiple health issues, surgeries, cancer treatments, accidents, genetics, and more.  Quite a few mention a combination of factors.  These responses illustrate the biggest problem facing physicians and researchers who are studying fibromyalgia, namely diversity of experience.  After all, we are looking at physical, psychological, genetic, viral, bacterial, and other triggers. Triggers are not a cause for a condition like fibromyalgia ( like one of you very aptly pointed out).  No one knows what the actual cause is.

However, reading about your experiences and knowing my own experiences makes me wonder if there’s not one thing we all have in common: persistent pain.  I know that sounds obvious.  What I mean is, before any of us had fibromyalgia, we were all undergoing some sort of injury (physical or emotional) or had some sort of condition that caused lingering pain (some people mentioned arthritis or lupus, etc) or underwent some sort of surgery (hysterectomy seems pretty common when surgery can be pointed at as a trigger).  There have been quite a few recent studies where researchers have done imaging of the brains of fibro patient and healthy controls.  There are differences (see library or library by subject) in the structures of the brains of these two groups, and it has been theorized that persistent pain can actually reformat the brain, particularly in pain processing regions, reformatting which causes the imbalances of chemicals which ultimately makes the pain processing regions overreact (a very simplistic explanation).

Similarly, there is research that has shown that when children (who are still developing) are subjected to either physical or emotional trauma (newborns who undergo surgeries, children of neglect/abuse), their pain processing systems develop differently, and there is a strong possibility of them acquiring a chronic pain syndrome – with the proper trigger.

It’s a theory that can’t stand on its own.  After all, why don’t all people under similar circumstances develop fibromyalgia?  Genetics must play a role.  Unfortunately, I haven’t seen anything saying they can fix deformed pain processing systems in our brains. However, IF there is something to this theory and fibro and other chronic pain syndromes can be predicted, then it seems like they can be prevented.  It may be too late for me to ever feel any better, but I would love to know that another generation would be able to prevent ever developing fibro.

This morning on my usual bus ride to work, I threw a question out to a couple fibromyalgia support groups on Facebook:  Have you ever been told what caused your fibromyalgia? If so, what? For me, I was told mild arthritis in my back caused it.

Within just a few moments, I started getting responses.  Thank you all who responded.  I thought you may be interested in a bottom line of the responses that I received:

1. Emotional trauma – thirteen
2. Surgery – seven
3. Injury – six
4. Viral – three (Epstein-Barr Virus)
5. Genetics – three
6. Lyme disease – two (bacterial)
7. Cancer – two
8. Sjögren’s – one
9. Grand mal seizures – one
10. Post-drug abuse – one
11. Temporomandibular joint disorder – one

Some of these were in combination, such as genetics and trauma.  Some had an overwhelming combination of factors.  A couple had no responses, having been told that some people just have it and no one knows why.  That’s actually the truth.  No one really does know why fibro develops in some people and not others.  But they’re looking.

I’ve been looking at research studies (see library) and can see a really positive shift in the way researchers and physicians regard fibromyalgia.  In the 70s, the focus was on psychology – what’s wrong with these people thinking there’s something wrong with them?  It’s rare that this kind of ugly attitude comes out anymore in medical literature.  The focus is now on the physiological causes for fibromyalgia.  It is no longer generally considered a throwaway diagnosis.  This is what gives me hope.  I don’t think there’s going to be a breakthrough with a magic cure, and I’m always very suspicious of claims that I can’t find corroborating research on.  However, knowing that there is an effort gives me hope, if not for me but for future generations.

Comorbidity is a tricky thing.  Put simply, comorbidity is when a patient has more than one disease, syndrome, condition at the same time.  For people with fibromyalgia, comorbidity becomes a confounding factor.  Which comes first?  The fibromyalgia or the other thing?  Or does fibromyalgia develop when another condition is not properly managed?  If the other condition has a cure or a good way to manage it, does that help with fibromyalgia symptoms?  Will curing the other problem or problems also cure fibro? Where exactly is the boundary between fibro symptoms and the symptoms of other (possibly related) conditions?  So very many questions.

Setting aside another question I have toyed with but which I haven’t really looked into yet (are there certain specific comorbid conditions for fibro patients and if so, if you look at the origins of those conditions, do you find the origins of fibromyalgia?), I found an article by Rivera and Vallejo in Rheumatology, “Fibromyalgia Is Associated to Receiving Chronic Medications Beyond Appropriateness: A Cross-Sectional Study,” (see library) which looks at people with fibromyalgia plus comorbid conditions and how medications are prescribed.  There is a startling bottom line.

1. People with fibromyalgia plus comorbid conditions receive a greater number of medications AND they are prescribed for a longer period of time.
2. People without fibromyalgia but without comorbid conditions receive fewer medications for a shorter period of time.
3. People who have fibromyalgia symptoms but have not been diagnosed with fibromyalgia and have comorbid conditions receive similar pharmaceutical care as people without fibromyalgia.

This is not an indication that doctors are just throwing pills at people with fibromyalgia, but it could be an indication that they are just flat out stumped and hope that by “fixing” other conditions they can give some relief to patients who are suffering.  It could also be an indication of the pressure that physicians may feel from the fibro patients to get relief for their pain.

The problem with meds is that they are like a give-and-take method for treating anything. Yes, there may be some relief for some conditions.  At the same time, they can cause other problems.  For example, I tried Lyrica for a short time because it is supposed to help both pain and depression.  The effect on my pain levels was minimal, as was relief for depression.  Without knowing it, I was living in a cloud.  I didn’t realize I wasn’t thinking clearly until I went off the Lyrica.  The pain levels went up more than I expected because I couldn’t even really judge its effect on pain because my mind was so muddled.  But as soon as I walked out of the fog and could think again, I could manage the pain better on my own.

It’s not just meds for fibro that are give-and-take.  I was recently on a course of antibiotics for a staph infection that gave me heartburn, a swollen and painful esophagus that made it difficult to swallow.  It felt like I wasn’t chewing, and the food was tearing me up as it went down.  Could I stop taking it?  Nope, but if it wasn’t a staph infection I probably would have – I’ve stubbornly stopped antibiotics that made me sicker than the condition I was being treated for.  But I only had to take this one for a week.  If I take a med for fibro, it’s going to be for an extended period of time.  I have to weigh those pros and cons carefully and make my own choice.