Physical Therapy & Fibromyalgia
Alternate Title: All in My Head
Ironically, my mom and I ended up going to the same physical therapy place at the same time, so that was kind of fun, but we never got to carpool, which was lame. We were still Tiger Balm Buddies, though. I was nervous, as is the norm, but PT ended up being amazing. My therapist’s name was Guillermo, and he was pretty neat. We would make awkward small talk or sit in absolute silence while I did my exercises. I would say hilarious things to my sister like “my physical therapist Guillermo would never treat me like that.”
They wanted to see my crooked spine multiple times a week, which adds up quickly when you have horrible insurance coverage and it costs like $80 per 45-minute appointment. So, as amazing as Guillermo may have been, and as much as the PT may have actually been helping my back pain (which it was), I eventually told them I had to stop going because it was just too expensive.
The amazing thing about this kind of therapy is that it is quite easy to do at home if you have the willpower, dedication, and memory. The problem with me is that I have none of those things, and also none of the determination, or the commitment. I will reliably never do at-home exercises, easy. No matter how excited or determined I think I am, no matter how committed I think I am, I absolutely am not. I have learned this about myself. Attempts may begin, but they will end in me getting up to make air fryer chicken nuggets – true story. I will buy all the props, all the straps, all the bendy stretchy things, all the rolly things – no, it does not matter. Unless I am physically in a different location and I have someone else standing there instructing me to do something, and unless I am in the exact right outfit for the day and circumstance, chances are, a workout is not happening that day.
I guess I should defend my pathetic self and say that working out is very difficult for me in the first place, as I overheat very, very quickly which makes me feel dizzy and like I might pass out. I sweat dramatically and turn bright tomato-red when everyone else in the room looks like they could be sitting in the library, casually reading a book. My body works extra hard and suffers for it. Working out has never been something I enjoyed in the past. Even light exercise or stretching elicits a big response from my body and I get heat flashes, so it’s historically been something I’ve avoided. Going to PT was a big step for me, and realizing I was getting real pain relief from exercise was an even bigger step. Doing this at all without fainting was the biggest step of all, though they knew of my condition and had to take certain precautions. I don’t know if I will ever be able to bend down all the way, which just made me surprisingly emotional to type out, even though I’m about to write more about how much of a badass I am anyways. It’s okay, badass women can cry. (Side note: I actually did just write all about the badassery yoga stuff, but then I realized the timeline on this is way off, so I’m actually moving that and saving it for a different post. I’m just going to rant here now for the most part and be less of a badass, probably.)
Anyways, I stopped going to PT because it was too expensive, and I was “doing it at home.” In 2022 I became a big girl who went on her own insurance plan, but that meant I had to switch doctors. I met my new doctor, Doctor N., and really liked her upon first impression. I went to see her for an annual checkup/establishing care visit, but when I began my laundry list of complaints to her poor nurse, she decided it was best to switch it to a problem-based visit (which was a good call).
I told them all about my pain and fatigue woes. Doctor N. ordered a comprehensive blood panel and did a physical examination (AKA: she poked and prodded me with her fingers and asked “does this hurt?”). My skin all over is very tender and sensitive to the touch, and the pain lingers, as we have established. So yes, reader, it hurt. That was the general conclusion. But my hips on both sides especially hurt and really evoked a response, apparently. She diagnosed me with greater trochanteric pain syndrome, or trochanteric bursitis. (One of these terms is current and one of them is no longer in use, and I don’t remember which is which.) It has something to do with lovely little fluid-filled sacs becoming inflamed, or something like that. Clearly, this diagnosis is very important to me.
My lab results came back perfectly normal. No, folks, I was not dying of AIDS on this day, so we can stop worrying about that, at least. Let me quickly mention, for these tests she ordered a LOT of blood. Like, more blood than I’ve ever had taken at once in my life. I couldn’t believe they still weren’t done and then they still drew more blood.
So I was extra exasperated when, at a virtual appointment a couple weeks later, I mentioned that my hair was shedding like a dog (as it’s done for years), and Doctor N. has the genius idea to send me back to the lab for an iron test. Perhaps my jaw dropped because, hello, had we not done this already?! Nope, and that was the key problem all along. Whooooooooops.
(And seriously, I lose so much hair. My hair has historically broken vacuum cleaners.)
You would think, with one of my biggest concerns being fatigue, the doctor would test right away for iron. You would think with my doctor knowing that I had previously been tested for iron a year ago and my levels being below average then, would test again for iron with the rest of the blood already being taken. Nope. In this first in-person appointment, we did not even get to talking about sleep before we ran out of time (although she knew it was a big concern as well) and she scheduled a secondary appointment just for that.
At this virtual sleep appointment (after rescheduling because I slept through the first one…), I was asked to explain my sleeping habits and what a regular night for me looks like. I told the truth, which was that I wake up several times during the night to pee (it’s really annoying, but I’m always able to fall back into a deep sleep afterwards). She asked me if I got thirsty before bed. I told her no, but then later realized that was a lie, as I guzzled water right before bed. She asked me if I had a family history of diabetes. Nope. She said she was ordering labs to test for iron levels and diabetes. Okay, I am calm, cool, and collected.
Appointment ends. I tell my mom, this is so weird, my doctor insists I get tested for diabetes. Hahahahahahahahahaha. My mom says by the way, we do have some family history of that… full stop, I was absolutely freaking out from this moment on until I got my hands on those results. I mean, I was already mentally preparing myself for my horrible future of eyeball injections and foot amputations before I even had the blood draw. I was looking up what to do after you’ve been diagnosed and the necessary lifestyle changes I would need. I just knew in my heart that I was diabetic and my life was about to change forever.
(No, I do not have diabetes, but I am changing my lifestyle FOREVER and everyone will always remember The Great Diabetes Scare of ‘22.)
Anyways, I got my iron results back at the same time, and it still baffles me that everyone, including myself, let it slip for this long when it got so bad. That was a big Yikes and a hard lesson learned. I am now taking a large dose of elemental iron every other night before bed. It is absolutely disgusting and makes me nauseous and even more constipated than I already was before, but I am no longer a human zombie and I can function during the day, so it’s totally worth it. (By the way, there was a whole other side quest involving a pulmonology clinic and a sleep study that got derailed, because I was being referenced out of network for more tests for this before my iron was even being questioned, apparently.)
Katie used to stay the night on Fridays, and that’s an iron night for me. She knew that as soon as I took it I had to rush to bed so I could try to fall asleep before the nausea kicked in. (This is still the only reason I remember what day to put the iron in when I refill my weekly med organizer, and it is very helpful.)
While chatting about sleep issues one day with my mom, she mentioned her friend who has fibromyalgia (DUN DUN DUNNNN). That name really clicked in my brain for some reason. I looked it up and saw the NIAMS definition of fibromyalgia in bold: “Fibromyalgia is a chronic (long-lasting) disorder that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping. Scientists do not fully understand what causes it, but people with the disorder have a heightened sensitivity to pain,” as well as the source below that mentioned brain fog as a symptom. My jaw dropped. Not only did I recognize the name so well because it was a form of dysautonomia, a condition I was practically notorious for having, but it precisely described the issues I had been struggling with.
At first I was hesitant to self-diagnose, because I know what that can look like to a new doctor, but the fact that this condition is a direct form of my pre-existing nervous system disorder and that it is very common to have multiple comorbidities really put the nail in the coffin for me.
I fell down the typical internet rabbit hole and saw more things that shocked me. This was probably the day I learned that all of those little things that hurt me so badly that everyone thought I was so weird for, were part of an actual medical condition and not just me being a wimp. I learned that your entire body feeling tender like a bruise or fresh sunburn being poked was not normal, and that this sensation was called allodynia. I learned that my pain was way over-reacting and lasting longer than it should to normal stimuli that should not normally be causing pain. Yet, my entire life, I had seen this as “normal.” It sucked, but that was still my normal.
To realize that it actually wasn’t normal basically felt like a huge “are you freaking kidding me???” moment. Seriously? Seriously??
While reading these things, with my previously established nervous system shipwreck, I 100% knew that I had fibromyalgia. But I know that I am also 100% a hypochondriac who has been very eager to diagnose herself with everything under the sun in the past, especially as a middle schooler who is *cough cough* sick and needs to stay home from school today, please. So I didn’t want to be like, hey, mom, you said your friend has that? Well, I DEFINITELY have that one, this time.
I don’t even remember what I did, probably just internally screamed until I imploded. That sounds about right. Of course, I no longer had my previous doctor who already knew me and my medical history, who would have a much easier time believing this, I had a brand new doctor who knew after a lengthy investigation that I had a low iron profile. I couldn’t just be like, hey, new doctor, diagnose me with this! That isn’t the impression I wanted to make, but I also wanted to scream this from the rooftops. I decided I would strategically drop hints until she diagnosed me all on her own. Surely, this would work.
To be clear, at this point I am suffering from absolutely debilitating brain fog. It is one of my biggest concerns, and one I have seen Doctor N. in specific visits about. I am not writing about it in depth here, because it got its own post. It was supposed to get better when I stopped sleeping as much, but it didn’t.
As my iron level rose, thus less fatigue, I found myself having the opposite problem – it’s hard sometimes to sleep through the night. But then that brings back the same daytime sleepiness problem where I want all the naps. Basically, my sleep schedule is a disaster no matter what I do, but we at least have the comfort of knowing that my iron levels are great and this is my new and improved body clock’s disaster.
I had seriously reached a breaking point once more with my malfunctioning body and brain, and was very concerned about my brain cyst or anything else that could potentially show up on an MRI. I sent a letter to Doctor N. explaining how much I have mentally regressed and practically begging her for a brain scan because I was so worried.
She did not grant me a brain scan, instead she referred me to speech and language pathology for an examination. I got a questionnaire in the mail that wanted my report cards from school, 504’s, IEP’s, asked if English was my first language, etc. These are great first steps for someone with a learning disability, but not at all the direction for someone who did fantastic in school and was worried she was gradually losing her cognition later in life.
I was so exasperated and desperate that I immediately wrote her an email back asking if we could please avoid jumping through hoops and go for the scan, and if nothing showed up I would go be seen at speech & language. (Keep in mind that at this point, I fear that I have a tumor or that my cyst has grown into a giant malicious slime monster that is slowly turning me to mush from the inside out. I am terrified and upset because I can barely read a book.)
Doctor N. still believed going to that appointment would be the best place to start, and told me to expect a call from them in 1-3 business days to schedule an appointment. I told her if she didn’t think this new behavior was concerning enough to warrant a brain scan, then I did not want to waste the time of myself and others going to speech & language. Years ago, I would never have spoken up for myself like that and gone to the useless appointment to appease this practical stranger, so I am proud of myself for actually being like umm no this is stupid. I did straight-up ask her in the same email if she believed this level of brain fog was normal for fibromyalgia, as I did not have a reference point, and didn’t know what to expect, but I was very concerned and this was very new for me.
In her response, she told me that we should definitely look further into these symptoms but S&LP was the best place to start. Then she told me I was due for a Pap smear. Then she reminded me once more to go to be evaluated by S&LP. She never answered my kind of very important pressing question that was eating me alive at every waking moment, so that sucked.
I never actually got a call from S&LP, whether they never did call, whether I completely missed it or whether it went to spam, but they sure did schedule an appointment for me at a random date and time that I did not choose nor approve of (I canceled it, obviously).
Meanwhile, Katie, a recurring character in my story, was being seen by another doctor at the same clinic, and was having a sunshine and rainbows experience, besides the part where she was going to be seen for back pain. She told me that, get this — her doctor actually brought up the possibility of fibromyalgia, all on her own! We were amazed.
Katie told me that I should switch to her doctor, who clearly takes fibromyalgia seriously, to the point where she even admits that it exists. I said no, I really like my doctor, really I do… and I did want to stick with her. She was nice, young, and very knowledgeable. She made a great first impression on me. I was upset after this hasty email encounter but wasn’t going to switch doctors over it.
Then, Dr. N. kinda said I might have fibromyalgia, which was pretty cool. She definitely believed it was a possibility, but the only way to diagnose it is to rule out everything else. She said things like “to treat fibromyalgia this is what we do” and then we would try those things, but she never officially diagnosed me or said anything else, so I didn’t know where I stood. Unfortunately for me, one of the primary treatments is a medication I have already been on for anxiety since I was a literal child.
Fortunately for me, my anxiety had been doing pretty great in this season of life and I was on a lower dose than I had been in the past.
Unfortunately for me, Dr. N said the first step was to raise this dose to the max to see if it made my pain magically disappear. Thus, it all comes back to “it’s all in your head” and “it’s because of your anxiety.”
I was immediately ultra-frustrated. Especially because the appointment abruptly ended with the knowledge that I was stuck waiting for two more months until our next appointment as my body adjusted to the higher dose. (A dose that I didn’t want to be on at all anyways, because I felt like I was really handling life well on my lower dosage and felt disgusting going back when I didn’t need to. I hate and struggle with being medicated. It’s a whole thing.)
I was stuck, helpless, and frustrated. The dam broke and I dramatically fell into my bed as soon as we hung up the call. The only thing missing was sad music that started playing out of nowhere. I had been in pain since at least 2019 if not before, for years my dysautonomia was hardly ever taken seriously by medical professionals because of my anxiety, I had personally known I had fibromyalgia and been hoping for a real diagnosis for who even knows how long at this point, and right when I thought I was finally going to find some relief or answers, I realized I was just going to have to rule this out for my doctor, and the only way to do that was through waiting.
This felt just like the tilt table test where I had to prove myself worthy before being taken seriously for treatment/diagnosis/what have you. (Although admittedly I would much rather endure two months of waiting for nothing than a brief traumatic life event, it’s the same concept.)
I realize in hindsight that this is a very common treatment that does work for some people, so it makes a lot of sense to try as a first attempt, but I was just like, SERIOUSLY???
After the two months, nothing had changed, I was still in pain. Also, I am just now realizing that this incident may have been the first thing to frustrate me with my doctor, and the brain thing was the final straw, but I waited too long to type all of this out and now I literally don’t remember and am second guessing myself. You kind of have to take what I say with a grain of salt because my memory is horrible and I actually don’t know anything that has happened in my own life at all, ever. I am an unreliable narrator. I can confirm (I think) that I did finally switch to Katie’s fantastic doctor, Dr. B. She wasn’t technically accepting new patients, but she takes family and friend references from her current patients. She saw me for the first time and was immediately like, oh, yep, you definitely have fibromyalgia. And then everyone clapped! Stay tuned for… I don’t remember. But there’s definitely more. Oh, there’s always more.
Autonomically,
Isabelle
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