That’s what I’m doing right now, so please forgive the typos. I just tried to cut my sandwich with the wrong end of the knife too… So what do dilated eyes have to do with fibromyalgia? Not much, since my eyes were dilated to check out a preponderance of floaters and floaters don’t have anything to do with fibromyalgia. But before they dilated my eyes, they cauterized my remaining tear ducts shut. And THAT has a connection to fibromyalgia. I just stabbed myself in the face with a straw I forgot was in my cup… People may be staring, but I wouldn’t know.
Here’s the scoop. Dry eyes syndrome (yes, there’s a syndrome for everything) is a fairly common disorder. I’ve had problems with dry eyes now for a few years. For awhile, my CPAP was blamed in case my mask was getting askew and blowing air on me at night, but that’s been ruled out. A couple years ago, the tear ducts at the top of my eyes were cauterized (sealing shut by burning). I know – I had the same reaction. Isn’t that opposite of what I needed? No, tear ducts actually suck the tears out of your eyes and into your nasal cavity, which is why your nose runs. When you cry, you’re just producing more tears than your tear ducts can handle. When someone has dry eyes syndrome, they aren’t producing enough tears, and the tear ducts are sucking the eyeballs dry. So you eliminate the tear ducts and the tears actually can coat your eyes. I still had problems after sealing the top ducts, so we tried bandage contacts – large sized contacts that just cover the eyes with no prescription. Those were horrible because I didn’t have enough moisture in my eyes to float the contact. So the doctor tried to plug the lower ducts with little plastic plugs, but my ducts bend kind of funny, and they hurt. I ran into the doctor’s office screaming for them to get those things OUT of me. They did. Since then I’ve been putting up with the burning and blurriness that comes with dry eyes. Until today. The last of the tear ducts (the little suckers) are closed. I can feel moisture on my eyeballs, but it’s not dripping down my face (the only potential side effect is crying unintentionally).
And what does this have to do with fibro? I recently found an article (Vehof et al, see library) about how people with dry eyes syndrome often have chronic pain of some sort. The article wasn’t really making a physiological connection. If you solve dry eyes, you won’t solve chronic pain. The article, instead, was pointing out to eye doctors that just because they may not perceive much severity of dry eyes syndrome in patients with chronic pain, it doesn’t mean that we’re faking it. Our nerves are hypersensitized, and they should help as they can to make us more comfortable. My doctor acknowledged that today without me mentioning the article. I almost fell out of the exam chair! It was a good experience, and indicative that fibro is becoming better understood and better embraced by physicians across specialties. For the better.
I’ve written about the Relentlessness scale before. So you don’t have to go back and find the post: I’m not satisfied with the pain scale. In fibromyalgia, the level of pain is not as important as the relentlessness of the pain, how much time we have with and without pain. In the doctor’s office we’re always asked how we would rate our pain. Wrong question. We should be asked how do we rate the relentlessness of our pain. Big difference. In my non-educated and partial opinion, relentlessness is the key to both depression and fatigue in fibro patients. Low level pain is exhausting. Relentless pain makes a person feel trapped and powerless.
In my Captain’s Log of Tuesdays where I document the week, I’m using both the Relentlessness scale and the pain scale to keep track of how difficult or wonderful the week has been. Using the two in combination, I think, is characterizing how the different pains work. Arthritis-type pain is high in both categories – relentless and painful. Chronic “white noise” pain (non specific unpleasant sensations) is high in relentlessness but low in pain. Acute pain, such as shooting pains in the legs, is low in relentlessness but can be quite high in pain. This gives rise to four different categories:
High relentlessness – high pain
Low relentlessness – high pain
High relentlessness – low pain
Low relentlessness – low pain
I don’t know if it would be useful to use these categories to work towards pain management or treatment, but I think it would be useful in terms of the psychology of fibromyalgia. While I don’t agree that people with fibromyalgia necessarily started out with a mental/emotional disorder, I do agree that it’s important to address any psychological disorders that may arise with chronic pain. Recognizing the relentlessness of chronic pain and even the variety of the types of chronic pain people with fibro have may be a good start in understanding the mental/emotional issues they may be having.
While the connection between fibromyalgia and depression is clearly documented in multiple sources, less discussed is a possible connection between fibro and bipolar disorder. Bortolato et al (see library) have studied the possible correlation between the two. Looking at the similarities brings up some more possibilities for study. Both fibromyalgia and bipolar disorder are characterized by:
- Hypothalamic-pituitary-adrenal axis dysfunction
- Elevated inflammatory markers
- Oxidative stress (I have to return to this one)
- Nitrosative stress (a new one to look at)
- Mitochondrial dysfunction (more study here is definitely needed)
- The reduction of melatonin and serotonin production due to decrease in tryptophan utilization and which causes dysfunctional pain processing
- Impaired neuroplasticity
It’s the impaired neuroplasticity that caught my eye on this one. I have no idea what that means. On the surface it sounds like brain hardening, but somehow that doesn’t sound very professional. So neuroplasticity is the next adventure in this quest. Is it a thing? What sort of thing? How is it connected to fibromyalgia? Is it a corner piece of the puzzle or just another sky piece?
Fibromyalgia is not the only chronic pain syndrome out there. More and more keep cropping up. Complex regional pain syndrome, irritable bowel syndrome, chronic functional abdominal pain, degenerative disc disease, chronic lower back pain, interstitial cystitis, myofascial pain syndrome, post-traumatic stress disorder, etc, etc… From what I can tell, a lot of chronic disorders are intertwined. People with fibromyalgia are likely to have chronic fatigue or restless legs syndrome too. What is unclear is whether fixing one problem could fix any other problems that come along with it.
Restless legs syndrome (RLS) is one chronic pain disorder that is interesting to look at in comparison to fibromyalgia (see Goulart et al – they also have a very good description of pain mechanics). An attempt to sum up how RLS and fibromyalgia overlap (in less than 2000 pages):
- Sleep deprivation or fragmentation. The disruption of sleep patterns happens in both RLS and fibro. RLS symptoms tend to flare at night. Sleep disruption in fibromyalgia is a little less clear – definite chicken and egg question.
- Either way, sleep deprivation creates an increase in inflammation markers.
- This leads to a reduction in pain thresholds. At this point is when “distortions” in pain perception begin in terms of pain duration, pain intensity, and even location of pain.
Dopamine is a strong connection between the two disorders, and looking at dopamine in terms of RLS clarifies some questions of how it connects in fibro:
- Brain iron levels are reduced, which affects tyrosine hydroxylase, an enzyme that is important in the synthesis of dopamine.
- Reduced dopaminergic synthesis leads to overutilization of dopamine.
- Overutilization of dopamine leads to reduced dopaminergic transmission.
- Reduced dopaminergic transmission leads to the lack of pain modification by reduced O2 receptors.
According to Goulart et al, both syndromes begin with chronic pain:
⇒ Chronic pain
⇒ Perpetual activation of the hypothalamus-pituitary-adrenal axis
⇒ Increased levels of adrenaline and noradrenaline (synthesized from dopamine)
The dopamine connection between RLS and fibro means they share dysfunction in the same part of the brain: dorsal-posterior hypothalamus, serotonergic dorsal raphe, neocortex, dorsolateral funiculus, intermediolateral nucleus.
Dopaminergic treatments and (get ready for it) N-methyl-D-aspartate receptor antagonists are possible treatments for RLS. Since the two have so many distinct correlations, is it possible there can be overlapping treatment?
If I’ve confirmed one thing about fibromyalgia these last few months, it’s that it does not conform to a set pattern either between patients or within one patient’s experience. This makes studying it a scattered mess because so many disorders are reminiscent of fibromyalgia that there are stampedes to compare fibro to other disorders not just to see what’s similar but what makes fibro different from those disorders because fibromyalgia requires ruling out the “bad stuff” that can’t go untreated.
What if (once more speaking as a non-healthcare worker of any sort) fibro is more connected to other disorders than it is unconnected? Once more my ignorance is going to make it very difficult to explain…
Problem X has 4 clinical markers that physicians recognize to diagnose and treat patients. Those 4 clinical markers cross into the fibromyalgia camp. A patient presents with only three of those markers, the 4th marker comes and goes, or the patient has all 4 markers but they are not consistent. Does the patient have Problem X or fibromyalgia?
Usually the clinical marker that is either inconsistent or not present is in blood tests, so it seems very clear cut – no, this blood test has come in negative, the patient does not have Problem X. Putting aside the possibility of the need of a different “normal” range for chronic pain patients, what if the equation is: symptoms minus positive blood tests equals Problem X lite? or Pre-Problem X?
Of course I could be grasping at straws. Almost every day I’m struck by how MUCH the medical community can do for so MANY different patients – the miraculous happens every day. It would be nice to be on the miraculous side…. If I was diagnosed with the “bad stuff” maybe there would be a treatment.
Time to look at exercise again, both the psychological and the physical. I still maintain that strenuous rather than light exercise is best for my fibromyalgia. I have no doubt in my mind. Again, I can’t say that everyone with fibromyalgia should be doing extreme exercise, but it is the only thing that has actually reduced fibromyalgia pain for me. However, psychologically it may not be working in my favor right now.
Yesterday I bribed myself with a chocolate shake to go work out at Silver Nanos (Crossfit for over 40). I know, I know, but it was how I could get myself to walk in the door. Obviously chocolate shake bribes are probably not the best way to proceed with an exercise routine. It was more important to walk through the door, however…. The problem with exercise right now has to do with lower back disc/arthritis issues and bursitis in my hips rather than fibromyalgia. However, psychologically, the problem stems from fibromyalgia.
No matter how often I remind myself that hurting and injury are two completely different things, it is very easy to fall back into that mindset where I simply dread the pain involved with exercise, both the pain and effort you feel at the moment and – remember catastrophizing? – the pain I EXPECT to feel afterwards. The very natural reaction to EXPECTATION of pain is to freeze. Your body and brain fight to protect you, and you freeze – deer in the headlights freeze. Yesterday was a mild panic attack that was alleviated with a chocolate shake (and I bought myself a couple $4 movies to get my mind off what I was dreading).
I wasn’t completely successful. I had to stop early because of banded good mornings, my new nemesis, which brought on solid lower back spasms. When did burpees stop being the enemy?
Here we ago again. Another seemingly reasonable theory from 2007, nine years ago, that has not resulted in a treatment option for fibromyalgia. Again, I’ll have to keep looking, but as much as dopamine is talked about in conjunction with fibromyalgia, you would have thought I would have seen “Dopamine – the Treatment”at some point.
Wood et al (see library) did a study looking at dopamine activity in the brain. Their theory: Fibromyalgia is brought on by stress or trauma, which in turn causes suppression of the limbic system (the part of the brain that controls emotions and instincts). Dopamine is a natural pain suppressant that is controlled (at least in part) by the limbic system. Therefore, suppressed limbic system, suppressed dopamine, suppressed pain suppressant or even enhanced pain reception. Dopamine also plays a role in cognitive function and could be involved in the hyperactive way people with fibromyalgia perceive pain.
Interestingly, this research is also relevant to Parkinson’s disease and adult attention deficit disorder. Squirrel!
The thyroid hypothesis is fairly similar and both theories include the possibility that chronic lower back pain and other chronic pain syndromes may be affected by either low levels of these hormones or the body’s inability to utilize them. There’s a strong sense of deja vu here, and I wonder what sort of connection between thyroid and dopamine there is. Do they work in tandem? Does one imbalance exacerbate the other?
Also, Wood et al is pretty solid about stress as being the cause. However, I remember reading (somewhere – have to find it again) that stress and trauma did NOT factor as heavily in another study as previously anticipated. The psychological factor with fibromyalgia is important, but I still wonder about a chicken and egg factor here. Also, more than 4% of the world’s population has been intensely stressed at some point in their life. Why does only about 4% of the world’s population have fibromyalgia if stress/trauma is the cause of the dopamine suppression chain reaction that causes fibromyalgia? Is the difference genetic? Still thinking…..
Remember how on Tuesday I was feeling great even though I didn’t have a reasonable explanation for feeling great? Yeah, that’s over with. My lower back, hips, and legs are completely out of control. Pain is radiating down my legs, through my abdomen – I feel like I’m sitting on wooden blocks! Standing doesn’t help. I just discovered walking only helps if I’m moving (carefully – no sudden corners), but I can’t stop or it’s worse. I am officially in the column of financial burden to my employer. I stayed home yesterday after not sleeping Wednesday night, and today I think I’m as useless as bellybutton jelly. I seriously have checked to see if I’m sitting on something clunky because my hips hurt so much.
BUT this too shall pass. AND I live in a safe, peaceful place. There are more blessings than curses in this world – they’re just sometimes harder to see. Hypervigilance be gone! I have no need of you – you’re just distracting.
When solving a puzzle, it helps to sort the pieces – make a pile of sky pieces or forest pieces, sea pieces, boat pieces, puppy pieces, etc. So you dump the pieces on the floor and start sorting through and making piles. Big pictures are compiled of little pictures and those little pictures have to connect together properly to make the big picture, or you can end up with a yacht sailing in a forest sky. To gather fibromyalgia pieces into little interconnecting pictures takes questions….
- How does the endocrine system connect to the central nervous system?
- How is the endocrine system connected to brain function?
- Which chemicals do thyroid levels affect? Is there one hormone or chemical that would cause other imbalances?
- How are rheumatological symptoms affected by hormone levels?
- What areas does metabolic deficiency affect? Does metabolic deficiency extend to hormones? Are hormones metabolized? How are they processed/metabolized?
- How much does water retention or inflammation play a role? Would it be worthwhile to have a water load test to check for capillary permeability? How does that actually connect to the sympathetic nervous system and then to the central nervous system?
- How does the thyroid utilization theory (or thyroid resistance) connect to gray matter/rheumatoid/chemical imbalances?
- Do the symptoms of autoimmune thyroid line up better with fibro symptoms as opposed to thyroid utilization (or thyroid resistance)? Which is closer?
- What chemicals “cause” aging? Are they the chemicals that are out of whack and cause fibro symptoms? Is aging caused by a reduction of chemicals or an increase in chemicals?
- What is actually the psychological connection to chronic pain? Disorder of perceptual organization? Early psychological trauma?
- If mitochondria is really changed in the course of experiencing chronic pain, can it be changed back to normal? If gray matter is reduced in the course of experiencing chronic pain, can it be changed back to normal?
There are more questions, but it takes a bit of knowledge to know what questions to ask. So onward…..
Here’s the thing. I haven’t been doing anything particularly well for the past few weeks. I haven’t eaten particularly well. I’ve missed Nanos for the last week or so. I haven’t been walking at work like I should. I haven’t been sleeping particularly well – interesting nightmares last night… I’m not particularly happy, but I’m not particularly down either. In spite of all of that, I feel pretty good. Pretty darn good.
This is the nature of fibromyalgia, the reason it’s so difficult to manage. By all accounts, I should feel terrible this morning. Why? Because of Talenti coconut pecan chocolate chip gelato, which I consumed merrily last night just before bedtime. Because I didn’t stretch or exercise at all yesterday. I just flopped into bed and had nightmares all night about trying to escape from some house I was being held captive in – my captor turned out to be a very nice and polite, rug cleaning guy slightly reminiscent of the commandant in Bridge on the River Kwai. I still jumped out the window with one shoe on. It was snowy and uphill. I should be groggy, stiff, sore… Okay, I admit to a stiff and sore back, but I’m feeling pretty darn good.
Now, next week when I’m sleeping better, eating better, exercising again – we’ll see if that pretty darn good can hold out. It’s never a guarantee. Doing all the right things is not a sure thing to feeling good. And in this case doing all the wrong things is not a sure thing to feeling bad.