Hello New Zealand, thank you for joining in. You are on my bucket list, by the way. One day, I’ll be stopping by on my way to Antarctica.
Today I walked into a very large health club teeming with very fit people exercising to beat the band, and I went into the ladies’ locker room, got into my middle-aged swim suit with a little skirt which helps avert eyes from my middle-aged thighs, climbed into a pool with other people and proceeded to practice swimming laps. I’m proud to say if I can keep my nose plugged, I can swim all the way across the pool without stopping now. But that’s not the greatest achievement of the night. The greatest achievement was driving there, getting out of the car, and walking through the front door. My mantra was going in my head, “You’ve got this, you can do this, you’ve got this, you can do this…” Anxiety didn’t win tonight.
According to an article about fibromyalgia and anxiety (see Amutio et al in the library), about 35% of people with fibro have problems with anxiety. They did a study looking at mindfulness training as a way of first alleviating stress and anxiety, and secondarily relieving fibro symptoms, because, as they point out, stress and anxiety exacerbates fibro symptoms.
This is not a new idea, but the way they discuss anxiety for fibro patients is interesting. Anger, they note, is a big part of the anxiety component for fibro patients, and this is an anger toward ourselves. While some anger can flow toward the condition itself, the pain itself, fibro patients are very hard on themselves. Mindfulness, according to Amutio et al, is to “cultivate an attitude of kindness, acceptance, generosity, and patience toward unpleasant emotions and thoughts that may arise.” It teaches “self-compassion,” coping strategies for when we beat ourselves up for not being able to do or be all the things we perceive other people think we should do or be. It teaches us not just how to give ourselves a break, but true acceptance of who we are at that particular moment in time, fibro notwithstanding. Acceptance of ourselves, compassion for ourselves.
Today, I’m happy with myself.
I found a good review of current research about fibromyalgia (see Sluka & Clauw in the library). I’m still reading it but was struck by something that I had (perhaps stupidly) not considered before: Animal testing for fibromyalgia research. I work at a university hospital where research is one of the key elements of the facility, and it never occurred to me that anyone had ever done animal testing for fibroymalgia. After all, how did they find an animal that would be prone to fibromyalgia? They didn’t. They created a fibromyalgia model in the animal.
Without getting into the ethics of animal testing (which I will say has saved millions of lives with breakthroughs that started in the animal lab – and yes, I am fiercely opposed to animal testing for frivolous things like makeup and perfume…), I will say that researchers are able to create “widespread hyperalgesia of the skin, muscle and viscera without observable tissue damage or inflammation,” in other words make the poor critter hurt like heck without any obvious injury. When they create these conditions for the animal, 50% to 60% of the affected animals begin to display anxiety and depression. They are also able to reproduce the fatigue that goes along with the chronic pain and psychological symptoms. Of course, they note that in “the fatigue-induced pain models female mice have greater, more widespread, and longer lasting hyperalgesia when compared to male mice.” Yep, the lady mice hurt more, over greater body area, and for a longer period of time than the men mice. While fibro is not a female condition, there is a greater number of women with the diagnosis than men, so I think they have managed to reproduce fibromyalgia in an animal population pretty well.
Questions are trying really hard to get through today’s brain fog here. I figure, if researchers can reproduce fibromyalgia, isn’t that a step closer to understanding it? If they had no clue how to make a critter hurt without actually creating an injury, then they would be that much farther away from figuring this whole thing out, wouldn’t they? Also, this reinforces what I already knew – the medical community is taking fibromyalgia seriously. I know how difficult it is to get permission to do animal testing, at least in a university hospital setting. Researchers have to climb through hoops backwards and then spit while doing a chicken dance before they just get permission, and then the continuing requirements and regulation that accompany the actual testing are exhaustive. If they are doing animal testing to see what helps relieve the symptoms that they are able to recreate, they are taking fibromyalgia well out of the “it’s all in your head” realm and into science. Thank you dear researchers, and to you poor critters suffering on our behalf, I salute you.
There is a new page in the main website called “Warriors: The Fibro Community.” In January I joined a couple of fibromyalgia support groups on Facebook. It’s been very interesting to get to know some of the other people out there who are coping with fibro and life in general. The combination can be overwhelming. I thought I would gather some of the info that I’ve gleaned from these groups into one place. I hope all of you Warriors – Silent or otherwise – don’t mind being fibro guinea pigs with me.
I keep looking at the list of additional diagnoses, thinking there must be a pattern somewhere… It seems like the top 10 diagnoses mentioned by the 126 people who responded would be either secondary diagnoses (consequences of fibromyalgia) which would give an insight to what the majority of people with fibro are dealing with, OR triggers (things that bring on fibro symptoms) which would give an insight to management. Instead it’s more complicated.
Here are the top 10 additional diagnoses (c = consequence of fibro; p = possible primary diagnosis; t = trigger for fibro symptoms):
|degenerative disc disease||25||p/t|
|post traumatic stress disorder||19||c/p/t|
|chronic fatigue syndrome||15||c/p|
I know the c/p/t categorization is arbitrary and arguable. Every one of these diagnoses can be considered a primary diagnosis. All but CFS could be considered a trigger for fibro symptoms (it usually is a partner to fibro). Sleep disorders are a complex vicious cycle – the lack of sleep can trigger fibro symptoms, but pain causes lack of restful sleep. Arthritis and degenerative disc disease are definitely separate primary diagnoses, but as chronic pain conditions, they can trigger fibro symptoms too.
Maybe what’s interesting about this top 10 is what is NOT on it:
- Surgeries, which seem to be often cited as triggers for fibro symptoms did not make the top 10, even when all added together.
- Back conditions would be at the #1 position if they were all added together (59), and would include everything from congenital conditions to accidents and simple wear and tear on the spine.
- Skin conditions would have knocked CFS off the list (16) if they were all added together and include chronic shingles, psoriasis, etc.
- Allergies would have tied CFS if they were added together, including chemical sensitivities.
- Autoimmune, viral, and bacterial conditions still would not have made the list, even if added together.
- Gastric conditions would top the list if added together (55), but still not overtake back conditions.
- General pain disorders/descriptions (such as neuralgia or allodynia) would still be fairly low on the list (16) if all added together.
- Joint disorders would have made the list if added together (29), but if all joint disorders plus all forms of arthritis were added together, they would blow everything else away (104) EXCEPT psychological, which when combined is at 157.
One of the things fibromyalgia researchers seem to try to do a lot is to subdivide fibro patients into groups (see Desmeules et al, Torres et al, Metyas et al, Auvinet et al, Spitzer et al, and Doss et al in the library for examples). They use everything from genetic traits to gait markers to personality traits to sleep disorders to create whatever subsets they can and thus instill some order in the chaos of fibromyalgia: “Yes, Ms. X, you are clearly a type 3a.56, based on your ability to back up, your inability to achieve level 4 sleep patterns for more than 8.2 minutes, your volatile Val158met polymorphism, and your type D personality disorder.” And then the physician can lay out the recommended management plan, including diet based on your blood type, an appropriate exercise therapy plan, and antidepressant/pain management medications as needed, with the necessary psychological counseling to learn the appropriate coping skills for your specific type of chronic pain, which despite all the possible subdivisions is still going to be chronic pain. It is a completely understandable desire on the part of people who became physicians in order to ease suffering.
However, after looking at all the different diagnoses besides fibromyalgia that were put forth in response to the question: I’m just wondering besides fibromyalgia what is everyone’s other diagnoses? (see post from January 27, “Multiple Diagnoses”), seeing fibromyalgia diagnoses as simply primary or secondary may be more useful for the patient. Of the 213 diagnoses named, quite a few seemed to me (an untrained layperson who reads a bit) to be primary conditions many of which have their own chronic pain issues to cope with:
|autoimmune hepatitis||hypoglycemia||Lyme disease|
|spinal bifida||rheumatoid/psoriatic arthritis||Lupus|
|diverticulitis||primary biliary cholangitis|
There are more that I’m sure could be classified as “primary” diagnoses. Since these conditions do often have a chronic pain component, I wonder how fibromyalgia can be distinguished. Is fibro added when pain lingers longer than expected? Psychologically, is it detrimental to patients to add a fibro diagnosis on top of a long term diagnosis, such as Crohn’s? Does that put the focus on pain more than necessary? Does it give patients more of a reason to look for symptoms, to try to subdivide symptoms all by themselves (“Is this normal? Is this fibro? Is this Crohn’s?”)
Finally, is it possible that allowing both patients and doctors to focus on the primary diagnoses (rather than fibro as a secondary diagnosis) would facilitate either management or healing by eliminating that psychological chaos that can come with that one more diagnosis, and one that usually comes with a “there’s nothing we can do about it” statement?
Just thinking out loud, but I think if I had any of the diagnoses above, I would not want that additional fibro diagnosis. I’d like to focus on the condition that can be better managed. It seems like managing the primary will automatically alleviate anything secondary.
If fibromyalgia is a dangerous condition at all, blurry lines make it so. Walking the fine line between getting medical help and not needing to get medical help is a daunting task. Every fibro patient is different, too, and each has his or her own medical histories to consider, so the blurry line shifts with everyone. I’ve set my own guidelines for getting help – although they’re imperfect and I often step one way or another over the line. It has helped, however, to be able to say to a doctor, here are my guidelines for coming to see you. I wouldn’t be here unless this visit fit into x-parameters. During the visit then, I try very hard to stick to the issue at hand and not blur that issue with all the other problems I face every day. Again, easier said than done, but it’s a goal, and it has made dealing with doctors easier. This last couple weeks have been a challenge to stay on the right side of the blurry line, so for my own reinforcement, here are my guidelines:
- Hemorrhaging or loss of consciousness, a trip to the ER is probably okay.
- Cough, lung tightness or shortness of breath, fever, check for pneumonia. I’ve had it three times in the past and it’s very unpleasant, thus the trip to urgent care this week.
- Lower leg tightness, pain, and swelling, check for DVT. I’ve had a couple in the past.
- Shortness of breath with sharp stabbing pain in the ribs, check for pulmonary embolism. I had a massive pulmonary embolism in the past and am on life #2. Best not risk needing a third.
- New pain that lasts more than a week and/or interferes with my ability to work. See the great pinky incident of 2016.
- Fever that lasts more than a day. Possible infection somewhere.
- Skin rupture with swollen glands under my chin. Last two times have been a staph infection and I probably need an antibiotic.
Finally my last note to self: Don’t hit anyone who suggests taking a Tylenol. Their heart is probably in the right place, but even the placebo effect doesn’t work when I take a Tylenol. Ibuprofen has ruined my tummy, and besides I won’t live my life popping pain meds of any sort. The long term effects – see my tummy lining – are worse than the short term benefits. Tylenol is not my miracle drug. My miracle drug is a good diet and exercise. If only I could get back on my feet to exercise and had any sort of appetite at the moment. Oh well, I need to lose weight, right?
So last week I was diagnosed with a symptomless UTI that moved into my kidney. The pain got better with antibiotics but hit again on Sunday night, adding a fever to the mix. Monday the fever continued and Tuesday, while the kidney pain was better, the fever ran rampant. Off to the urgent care Tuesday night, and I was coughing to beat the band.
Another urinalysis showed the bacteria is gone – great news. They eliminated pneumonia – great news. They even did a chest CT because my D-Dimer was elevated and I have a history of pulmonary embolism. No PE – great news. Influenza. Okay, go home, go to bed. This afternoon while I was fixing a little something to eat, the pain in my kidney came back with a vengeance – the third occurrence. Talk to a nurse – they want to see me, trek into the doctor, and the result: they can’t figure out the pain. It’s not in the right place to be my kidney. It probably never was the kidney. They assumed it was when they found the bacteria. So let’s wait and see if the pain goes away with the influenza (even though the pain started a week before the flu symptoms). So I sit here, anticipating the rest of the week off work, with a fever, cough, my skin feeling like it’s peeling off, and a sharp pain in my not-kidney. Oh, I’m supposed to contact them if the pain persists. Will I? No.
Who knows what it is? It’s just going to go on my list of ignore-it pains. The doctor was pretty sure it’s not life-threatening, and they’d have to do a CT to see if there’s actually anything physically out of whack. I’ve gone through my due diligence. If the fever persists, I’ll think about contacting them again. Likely the pain will persist for a few months and then fade away. I’m not going to waste my time or their time and the resources to keep at it. I’ll just be a little more tired than usual for awhile.
The good thing about it all is treating an unknown, symptomless infection.