When I was diagnosed with “Fibromyalgia” over two years ago, I first thought it was some fake, made-up diagnoses that doctors give you when they have no idea what’s wrong with you. “Chronic Pain Syndrome” is another one and is often linked / spoken alongside Fibromyalgia. It took a couple of years of therapy to accept my condition but I have to admit, it’s frustrating trying to explain it to other people. I suppose that’s why I’m here writing something THIS personal…in part for personal therapy reasons and to also just send this article to whomever asks so that I don’t have to keep explaining it.
You see, Fibromyalgia isn’t a condition that is visibly apparent. Unless someone asks you what’s wrong and you respond honestly, there’s no way someone will be able to just visibly look at you and say, “oh yeah, you’ve got Fibromyalgia…I can tell.” Even then, unless you’re doubled over in pain or visibly popping pills, most people won’t even ask what’s wrong. Fibromyalgia is a very invisible condition, one that takes place on the inside of the body. People instantly recognize a wheelchair patient when they see one, but 9.9 times out of 10, no one will guess someone is a Fibromyalgia patient.
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*Takes note of spondyloarthritis for future games of Scrabble*
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SO,WHAT IS IT?
According to the CDC (that’s how you know it’s official), “Fibromyalgia is a condition that causes pain all over the body, also called widespread pain. Fibromyalgia also causes sleep problems, fatigue, and emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2% of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed.”
Effectively treated and managed…ha. I’ve been to physical therapy. I’ve been to Cognitive Behavioral Therapy (CBT). I’ve been to Acceptance and Commitment Therapy (ACT). I’ve been to a Pain Management Specialist and tried a number of prescription medications. I’ve received Osteopathic Manipulation Treatment (OMT). I’ve been to other specialists in an attempt to find alternate solutions. It’s been about seven years now and it took the doctors five years just to finally diagnose me with Fibromyalgia. Needless to say, current medical science isn’t equipped to handle me.
On that same website, the author goes on to talk about the complications of Fibromyalgia.
“Fibromyalgia can cause pain, disability, and a lower quality of life. US adults with fibromyalgia may have complications such as:
More hospitalizations. If you have fibromyalgia you are twice as likely to be hospitalized as someone without fibromyalgia.
Lower quality of life. Women with fibromyalgia may experience a lower quality of life.
Higher rates of major depression. Adults with fibromyalgia are more than 3 times more likely to have major depression than adults without fibromyalgia. Screening and treating depression are extremely important.
Higher death rates from suicide and injuries. Death rates from suicide and injuries are higher among fibromyalgia patients. However, overall mortality among adults with fibromyalgia is similar to the general population.
Higher rates of other rheumatic conditions. Fibromyalgia often co-occurs with other types of arthritis such as osteoarthritis, rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis.”
“Lower quality of life” sums it up nicely. Or maybe not so nicely.
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For. The. Kids. I’m pretty sure that lady is my assigned spirit animal.
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PHYSICALLY
In my case, I live in a world where I wake up in pain and go to bed in pain. On a scale of one through ten, these pain levels fluctuate between a three and a seven on average. I have chronic migraines, IBS-C, tendonitis in my wrists, tinnitus in my ears, high blood pressure, sciatica, insomnia / sleep apnea, and ITP (low platelets). The IBS-C prevents me from enjoying 90% of what other people eat…it’s like playing Russian Roulette with food. A low FODMAP diet helps but any diet can limit nutrient and mineral intake the body needs to keep functioning properly. IBS-C sucks but that’s a whole different blog post.
At present, I take an Excedrin Migraine & Ibuprofen as needed to prevent my pain from taking me out for the day (being in your bed all day curled up in a fetal position is not ideal or fun). NSAIDs, as you educated people know, mess with your stomach. Robbing Peter to save Paul is not what I had preferred to do. Pepcid helps a bit but H2 blockers are not something one should take regularly. Neither should I be taking NSAIDs regularly, but here I am. PPIs like Prilosec cramp my stomach something fierce.
The physical pain prevents me from doing things most people normally do. If I tell you that I can’t go to a restaurant or meet up with you, it’s not because I’m being a jerk…it’s because I’m not well enough to travel and needlessly put myself or others in danger by driving a vehicle. If I can’t eat wheat or dairy or soy or whatever, it’s because I recently had an esophageal flair up or abdominal pain. This takes the form of crushing chest pain and stomach cramps (respectively) for several days.
If I visibly flinch when someone gives me a friendly slap on the back and don’t smile in response, it’s because you’ve just unleashed the fire ants that live beneath my skin. Fibromyalgia effects the nervous system and everything is hyper-stimulated. Pain or pleasure, I feel it five to ten times more intensely. This hyper-stimulation is why medication treatment is unsuccessful, the side effects are typically unbearable and create new problems while not fully fixing the main problem. DO NOT HIT OR SLAP ME PLAYFULLY!
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Normally I’d attempt to correct this person’s grammar but frankly, I just don’t care anymore.
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MENTALLY
Anxiety and depression are a big factor. If it weren’t for my heightened sense of responsibility as a father and partner, I probably wouldn’t be here right now. Make no mistake, I have no plans to do anything stupid. I have no intention of harming myself or others. That said, you’d be depressed too if you lived in pain every day, unable to control what your body is doing to you. Add professional & medical incompetency to the mix and it’s a party.
There’s also the added stress of filing for Social Security Disability. Being accepted for SSD can take multiple attempts, adding up to YEARS of waiting for hearings and rulings. While my attorneys are handling most of it, I still have to fill out endless paperwork and on some occasions, explain to a judge why Fibromyalgia affects my quality of life. I, unfortunately, write better than I speak. We’ll circle back to the judge thing in a minute.
Let’s talk close friends and family. I will openly admit that I get irritated when asked to drive forty minutes to an hour to meet people. I typically can handle ten minute drives to the grocery store and back…I don’t go anywhere else. These people know I have Fibromyalgia and yet they ask anyway. On one hand, they may be just trying to be polite already knowing my answer. I’ve also, on more than one occasion, through the silence on the phone, hear the judging and eye-rolling.
Would you ask a wheelchair patient to stand up and use the stairs and then get mad at them when they say that they can’t? Of course not. That’s the problem with Fibromyalgia and this goes back to what I was saying earlier about it not being a “visible” condition. I do a lot to hide my discomfort and it took a LOT of practice to do it. On high pain days, I’m still not usually successful at hiding it.
I have to remind myself that my close friends and family have no basis for comparison. They can’t SEE the condition. They’ve never FELT the condition. On one hand, I try to be patient and give them the benefit of the doubt. On the other, if I can’t sometimes convince my very own close friends and family that I am suffering from something, how in hell am I supposed to convince a judge that I’ll meet once in my lifetime?
As I said, anxiety and depression are a factor.
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“Joey, do you like movies about gladiators?”
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SPIRITUALLY
This is a tough one. When my parent divorced (I was in grade school) and I got continuously bullied on in school, I lost faith in God. I was just a kid in a Catholic school of all places…how can a deity as wise and powerful as God allow this to happen? Not only to me, but to kids who die in childbirth and other horrible ways. What kind of master plan allows for this kind of suffering?
As an adult and all the recent crap I’ve been through with my condition, I’m still admittedly wavering. I grew up Catholic and my fiance’ is a hardcore Christian so she’s been slowly trying to repair my relationship with God. She’s worried for my soul and where I’ll go when I die. Part of me sees that as typical fear-mongering while the other part of me, soon to be forty-three years old and afraid of an early death from Fibromyalgia, is becoming more accepting.
I attempted to read the Bible and I couldn’t stomach the Old Testament. I tapped out when the two daughters got their father (Lot) drunk and had relations with him (Genesis 19:35). My fiance’ insists I should jump straight to the New Testament and out of respect for her, I’ve been trying to read that too.
I’ve also been trying to talk to God, though as it stands I can’t tell if He hears me or cares to. The Bible, as far as I can tell, doesn’t spell out the do’s and don’ts for how you’re supposed to talk to Him. What can you say and what can’t you say? What will cause him to smite you? How wrathful is He really? It’s like trying to play a complex board game with a missing rulebook. All I can do in my conversations with Him is to be respectful and honest. I hope it’s enough.
Fibromyalgia constantly tests my relationship with my spiritual side. The high pain days are especially tough. If God is watching and judging what I do, then I hope he’ll see how hard I’ve tried despite…well, everything. At this point, all I can do is practice good morals and hope for the best.
THE LONG ROAD AHEAD
Fibromyalgia has no cure, currently. I’ve been forced to live off of my savings for the last two-three years as I am unable to work. Content creating on YouTube does enough to pay my electric bill every month. At present, I’m hoping to get Social Security Disability before I run out of money. At that point I’m not sure what I’ll do. My fiance’, son, and dog deserve better from me and it’s so frustrating when I can’t deliver. I sometimes feel like a failure and that’s the depression talking, I’m sure.
So I distract myself with games and other interests to keep my mind occupied. Therapists call that “distracting” even though some practices say that I should “acknowledge” that pain instead. Sometimes all you can do is play the hand you’re dealt. The best I can do is wait for some good news as I feel like I’ve tried almost everything else.
I would be remiss if I didn’t also recognize how helpful and patient my immediately family has been. I’m no peach to live or deal with.
The long road ahead is not going to be an easy one. Whoever you are…family…a friend…an acquaintance…God…I hope you’ll remember that the next time I do something odd or say something that pisses you off. I’m not trying to be a jerk and I’m not trying to ignore you…I simply just, “can’t”.