Last week I ended up in the ER for a really solid pain in my right side back which turned out to be a kidney infection.  Good for me for walking into the ER and saying, I think I need help.  It’s not an easy thing to do.  There is always an underlying fear of someone saying well of course there’s nothing wrong with you and sending me on my way with a get-used-to-it attitude.  Very often I don’t seek help because of that fear.  If I ignore it, most likely it will go away.  Obviously not with a kidney infection, however.

I’m faced with another dilemma this morning.  The pain is back, and worse.  I’m on my last day of antibiotics and the pain is back.  I can’t take another day off work, so I’m sitting in the cafeteria before work trying to will the pain to go away.  But this time there is also a low-grade fever and mild nausea (although that could be the antibiotics – they haven’t been pleasant).  My current doctor is a bit disinterested.  I asked him last week why I keep coming up with infections and he has yet to get back to me.  The thought of the ER and missing more work is stressing me out, which then makes things worse.

Course of action:  Call the doctor’s office this morning and tell them about my symptoms.  The fever is new, and I don’t usually break into spontaneous fevers, so that may be an indication of something.  Hopefully I can get an appointment instead of sitting in the ER.  And then they can say, oh well, you still have all your organs?  We’ll just pop them all out of your gut and then you’ll be right as rain!  An internal amputation of everything that hurts.  Somehow, I think that may be a bit of a pipe dream.   Of course, I still think there’s something to a spine transplant.  That would be good, wouldn’t it?  Wish me luck…

The other day in a post called “Multiple Diagnoses,” I documented the responses given from members of a fibromyalgia support group on Facebook about what other diagnoses people have besides fibromyalgia.  There were a remarkable number of responses and diagnoses, which I categorized into 37 general categories.  The top category, the most people with this type of diagnosis, was psychological.  Well over half the respondents mentioned a psychological diagnosis.  The breakdown of the actual responses are below.

Since I joined a couple fibromyalgia support groups on Facebook, I’ve seen several posts from desperate members who just essentially want to it all to end.  I started looking for articles about the correlation between fibromyalgia and suicide.  It was not difficult to find.  Lan et al (see library) performed a large, population-based study comparing patients without fibroymalgia, primary fibromyalgia patients, and patients with fibro plus additional diagnoses.  Furthermore, they broke down the additional diagnoses to compare, for example, a patient with heart disease and a patient with fibro plus heart disease.  The bottom line is that patients with fibro plus additional diagnoses are more likely to make a suicide attempt than patients with primary fibromyalgia (no other comorbidities) and patients without fibromyalgia.

Their explanation of why this may be is very interesting, although they do not really address the “which comes first?” question.  Still:

1.  Anxiety predicts physical dysfunction – if you’re anxious, you tend to catastrophize, fear movement, etc.
2. Anxiety and depression can affect the perception of disease severity – the more you think about pain, the more severe or dangerous it seems.
3. Anxiety and depression enhances the perception of pain.

Further, major depressive disorders involve glutamine and GABA receptors – both of which have been identified as having a role in the fibro syndrome:  “Decreased serotonergic neurotransmission in individuals with fibromyalgia may precipitate a depressive state,” increasing the risk of suicidal behavior.  Furthermore, basic risk factors for suicide are: generalized pain (non-cancer), depression, and nonrestorative sleep.  Anyone with fibromyalgia has just said, well that’s me.  Therefore, fibromyalgia and depression are not just psychologically entwined, they are also physiologically entwined, giving people with fibromyalgia more of a risk of suicidal behaviors.

Does that mean that if you have fibromyalgia, you’re going to try to harm yourself?  No.  It means, like everything else about fibromyalgia, mindfulness, being mindful of anxiety or depression, and developing coping mechanisms are necessary.  In addition, certain medications prescribed for fibromyalgia (anti-epileptic drugs, such as gabapentin and pregabalin) have been identified as increasing the risk of suicidal behavior or thoughts (see Pereira in library), giving fibro patients an extra element to consider.

You have a special place in my heart – thank you for joining us.

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!