the fatigue.. it’s taking over… *lies down and never gets up*
Posts tagged fibromyalgia.
Trigger Warning: rape, death of a parent, victim-blaming, suicide, drugs, food, trauma
My mother had fibromyalgia, and I remember growing up watching her suffer with the pain, the fatigue, the ever-changing trial and error of treatments- not to mention the social factors involved with being disabled with an illness not all health care providers know about or acknowledge.
My own symptoms started when I hit puberty at the bright and early age of eight. I remember feeling so sick and exhausted and sore and staying in bed for a month because I felt sick. I went through tons of tests, but they found nothing. “Depression”, they told my mother. “Snap out of it”, they told me.
My symptoms got worse as I got older- especially after my mother died when I was fifteen and after I was raped when I was seventeen. The emotional stress triggered severe new symptoms, and living became too much. The combination of emotional and physical pain was more than seventeen year old me could handle, and I made my most serious suicide attempt. Friends found me lying on the bathroom floor, and I was transported to a hospital. I don’t remember anything until waking up the next day and ripping the IV out of my arm- furious to be alive. This only confirmed what doctors had always told me- I’m depressed. Here, have some meds.
I’m not going to go into describing all of my symptoms, because that would be exhausting and I’m using a ton of spoons as it is. If you feel it’s important for you to know so that you can relate better or whatever, feel free to ask.
I left my hometown as soon as I graduated high school- away from the people who had known my mother, whose absence was (still is!) indescribably devastating. Away from the people who called me a slut, who told me I asked for being raped, told me it was my fault, told me I was full of shit. Away from all the people I’d fucked hoping I could feel something other than pain. Away from all the friends who stood back and did nothing as I spiraled into self hate. Away from a place where I was one of the only out queer students, where I was harassed for who I choose to fuck. I don’t go back there anymore. Not only had all these fucked up things happened to me, but my body was trying to kill me, I could have sworn.
I spent the first two years of university regaining my emotional and mental health, making new friends, formulating dreams, passionately involving myself in activism so that I could fight to change things for people who were going through the things that I had been through. The summer between second and third year of university, I was hit by a car while crossing the street. Hard. My physical health continued to get worse, and getting through my days was so incredibly painful and uncomfortable that I finally made the decision to go through the frustrating process of medical testing so I could figure out what was going on. I’d watched my mom go through this, and that within itself was triggering- but I was tired of living this way. I was ready to take control of my own life.
Well, fast forward through two years of vigorous research (I’m a huge research nerd), ~10-20 different doctors, natural medicine, ~50 different pharmaceutical medications, many (often painful) tests, vitamin supplements, injections, pain clinics, various types of physical and mental therapy, and much more.. Here are the things I have discovered:
(disclaimer: This is an account of my personal experience, which is based on educated opinion and trial and error. I’m not saying it will work for anyone else, but I believe strongly that it’s worth a try- and anyone with fibro will tell you, they’ve tried a fuckton of things. I also have the privilege of having been under my dad’s health care plan while in university, and of living in Canada, where health care is generally pretty affordable.)
Fibromyalgia is real.
Some doctors will not acknowledge fibromyalgia as real, because there is no way to test for it aside from elimination of any other possible health issues that way cause symptoms.
This is not the case. From the research I’ve done, and from my own lived experience, it seems that fibromyalgia is the manifestation of a group of symptoms that have some sort of underlying cause-that cause is just usually unknown. Finally, only a few months ago, I found a doctor who is interested in looking outside of the box a little. He managed to figure out that all of my health problems (fibromyalgia, chronic fatigue syndrome, arthritis, neuropathy, hypoglycemia, hypothyroidism) are caused by mitochondrial disease. This literally explains every fibro symptom. There is a blood test for mitochondrial functioning that I highly recommend folks ask their doctors about. Mitochondria are some interesting little organelles that are responsible for A LOT!
Fibromyalgia is trauma-based.
There’s no concrete answer to what causes fibromyalgia, but after tons of research (books, internet, chatrooms and message boards, doctors, studies, reciprocal stories of lived experience) the common denominator appears to be trauma.
When you undergo some sort of physical trauma (ie: car accident, a fall) or emotional trauma (ie: abuse, death of a loved one) your body responds with the same chemicals to allow your body to go into “fight or flight” mode. Basically, if you are genetically predisposed to some sort of health problem that may trigger fibromyalgia and you undergo trauma (especially repeated trauma or multiple instances of trauma) your brain goes, “woah, dude. You’re asking me to make a lot of these chemicals, that can’t be right. I’m gonna make minimal amounts now instead”…so your body always thinks it’s going through trauma and does not release the same chemicals to deal with it as a person who doesn’t have fibro.
Get off drugs.
The medical care system’s response to fibromyalgia is drugs. Anti-depressants, benzos, opioids, opiates, nerve blockers and more.
Now, listen. Some people need drugs to live. Some people need drugs to increase their quality of lives. Some people need drugs because they do not want to make other changes to their lives, and drugs are an easy and effective way for them to live their lives. Above all else, I believe that everyone should have the choice to use drugs any way they please.
However, in my personal experience in treating my fibromyalgia, drugs have only ever made me sicker. Part of what mitochondria do is they filter out the crap from your cells so they can use good stuff to make energy. If your fibromyalgia is triggered by mitochondrial disease or disfunction like mine is, taking medication will just overload your body with toxins. If you are able to replace taking drugs with the lifestyle changes that will follow, I highly recommend doing so. Or at least giving it a try. do not intend to shame anyone who needs to or chooses to use drugs to treat fibromyalgia (or anything else), but it would be unfair to write this whole list about how to heal from/ learn to live with fibromyalgia without addressing one of the most important aspects of my journey with it.
Drugs also do not allow you to access the deepest levels of your consciousness, in my opinion and experience, which is vital to the mental and emotional health that is innately tied to your physical health and well-being.
Yes, this includes alcohol and other “street” drugs as well as pharmaceutical drugs.
Take care of your mental and emotional well-being.
We live in a world that is oppressive and induces a ton of trauma. I don’t think there are many, if any, folks who have no been traumatized in some way. Trauma is central to fibromyalgia. So, in radically healing yourself, it’s important to get to that root and work through the traumas you’ve experienced in your life. Guess what? You fucking deserve it. You deserve to feel good
Personally, I’ve done CBT, feminist narrative therapy, and energy therapy. They were all very helpful in different ways. If you can’t afford private therapy sessions, look into community support groups, or call your local mental health services and ask them what kind of options are out there that may work on a sliding scale or for free. They will often have resources to suggest. If you can’t find anything at all, consider forming a support group of your own.
Get together a solid support network.
You will need support while going through this process. It takes a huge toll, both physically and emotionally to live with this disease, and you should not have to go through it alone. Ask supportive people in your life (partners, parents, siblings, close friends, aunts, uncles, grandparents, centres for students with disabilities, therapists, professors, teachers, doctors) to support you in your management of your illness. Try to figure out specific ways they can physically and emotionally be there for you. They will need support as well, or they’ll get burnt out and you’ll both feel shitty. This is important.
Here’s an example of a few ways my partner supports me:
- we communicate about my energy levels using spoon theory
- he is supportive (though he doesn’t police) my lifestyle changes/eating habits
- he is mindful of my ability levels
- he attends doctor’s appointments with me
- he learned to release my trigger points
Maintain a solid bedtime.
Go to sleep and wake up at the same time every day. This is really hard. Especially if you’re in your early twenties, like I am. But seriously. It makes the biggest difference in pain and energy levels, as well as other symptoms like memory and concentration.
Diet and Nutrition.
Figure out what your food intolerances are, and stick to a very strict diet. This has been the single most important method of managing my illnesses.
Your intolerances may be different than mine, but I will share mine with you anyway, since they are all common to fibromyalgia.
Gluten. It increases inflammation in the body. Three days after going off gluten, I was off pain meds. Seriously. Plus it’s all GMO and gross and not really good for you anyway. You’ll feel so much better.
Nightshades. There jerks are full of alkalines, which apparently our bodies don’t usually like. Tomato, potato, zucchini, banana, peppers, eggplant. Don’t do it. Infammation sucks.
Sugar. Lots of people with fibro are hypoglycemic. When we eat sugar, especially processed sugar, our bodies are all, “WOAH I’M GONNA OCK SOME SUUUPER HIGH BLOOD SUGAR! OH WAIT, I CAN’T PROCESS THAT….OKAY CRAAAAAASH” and then life sucks. Cutting out sugar is REALLY FUCKING HARD because it’s in everything. As you can see, this has been a big deal for me because mmmm sugar. Coconut sugar is a great (though expensive) alternative that doesn’t affect glycemic index.
Things that are good for us: dark, leafy greens, iron, high protein, organic
Supplements and vitamins.
Vitamin D has made a HUGE difference in my pain levels, and has also really helped my depression and anxiety. Omega 3 and 6 help my pain a lot, as well as my energy. Iron makes a big difference in energy levels (if it makes you constipated, take it with magnesium).
Heat and water therapy.
Heat (ie: hot water bottles) are very helpful for sore muscles and cramps. Warm/hot water is even better. Find out if your city/town has a therapy pool with warm temperatures. Often they will also have wheel chair access and provide swimming belts, which are great for floating around of water-walking/running and take pressure off your joints and muscles. Don’t over-do it. Remember, the gentler the better. You don’t want to overexert yourself and cause a flare up.
Again, this is just what has worked for me. I feel so much better, and I’ve been off drugs (and living according to this plan) for nearly a year. I’m healthier, happier, and am proud of myself for committing to my level of ability rather than what is expected of me because of the ableist society I’m situated in. I still have a long ways to go in my healing, but I’m working towards it. Isn’t life a perpetual process??
I hope some people can find help in what I’ve written here. Thanks for reading~
I’m pretty sore and feeling kinda shitty today (ick, low air pressure!)
But I’m gonna go make a nest in the living room downstairs with my partner and I’m gonna watch netflix and relocate a bunch of studs from an old belt to a bra. Also, I’m gonna make my partner some business cards. And then maybe go for a walk with Luna.
I ate an awesome salad for lunch (romaine lettuce, kale, carrots, hard-boiled egg, shredded cheese, stirfried onion and garlic, and hemp seeds with balsamic vinegrette) and I’m gonna make a smoothie with lots of vitamins and stuff now.
I’m so sore.
It feels different than the kind of pain I usually feel. Usually, my pain in intenseoverwhelmingdeepdarkpresent, but today it just feels like I’ve had the kind of work out that is truly fulfilling, cleansing, and part of building something up stronger. It’s not like it feels as though my fibro is gone, it just feels as though my pain is purely physical. For once, there’s no non-physical thing tied to my pain.
If I felt as though there were a huge barrier in my life before, it’s as though I’ve turned a corner.
Holy fuck, this shit is so cool.
Okay, mad spoonie day today.
I woke up in a ton of pain, so I stayed in bed and slept in and cuddled my puppy.
Then I got SUPER BAKED, fed the puppy, and went on tumblr and got super lost.
I want tea and possibly food, but I’m way too sore to motivate myself to get up.
I guess that’s what i get for spending 6 hours on campus writing a take-home exam?
Not just a few, but all diseases can heal with the correct diet and absolutely no medication. Your body is capable of handling and recovering from any ailment provided you give it the appropriate terrain to heal. Supplements may at times be beneficial, but your true medicine is food and always has been.
No, it’s true! I cured my severe depression with chili-dogs. I only crushed up some prozac and put it in the chili because I liked the taste.
I’m gonna need this recipe.
I agree very much with this. Things that have changed my life:
- cutting gluten out of my diet
- cutting nightshade foods out of my diet
- taking omega 3+6 supplements
- vitamin d supplements (this was HUGE for my depression/anxiety)
- cutting alcohol and chemical drugs out of my life
- currently working on cutting sugar and caffeine, injectable vitamin B, probiotics that target mitochondrial functioning
These dietary changes have helped me with both my physical and mental disabilities INFINITELY more than any of the ~50 drugs I’ve tried. Not saying it works for everyone, but it has worked for me.
super exciting health update~
One of my friends and her mom both have fibro, and found an amazing doctor who specializes in food allergies and sensitivities and is very interested in finding what actually causes fibromyalgia in individuals (because fibromyalgia is really just a way of doctors saying “we don’t know what is making you so sick, but we recognize you’re sick”) as well as using as few pharmaceuticals as possible. I went to my second appointment yesterday, and it was really amazing. After years of doctors telling me that whatever is actually making me sick isn’t in textbooks, I finally found one who was willing to take the time to think outside the box (aka pharmaceutical studies and textbooks) and figure out what’s going on. The first appointment he just asked a lot of questions and did a bunch of blood work, including ones no one has thought to run on me yet. The blood tests showed I have limited mitochondrial function.
Mitochondria are part of all animal and plant cells, and are in charge of energy production (synthesizing sugars to create energy our bodies can use), synthesizing hormones, and cellular respiration (synthesizing oxygen). Since my body is barely able to utilize oxygen, that’s why I get such severe muscular pain and inflammation and symptoms like that, because my cells take a lot longer to repair themselves.
Since my ability to synthesize hormones is impaired, this has caused hypothyroidism. This explains a lot, since every doctor I’ve gone to, from the time I first started having symptoms when I was like 11 has suspected that hypothyroidism is the underlying issue, but my thyroid tests both above and below what it should (it’s like a rollercoaster). This is because of the inflammation around my thyroid, which causes it to secrete large amounts of hormones at a time, and then it runs out and can’t release enough, which causes it to test weird.My inability to synthesize sugar has resulted in pretty severe hypoglycemia, which is another thing doctors have suspected for a long time, but been unable to explain or test for.
In other words- I have fibromyalgia because I have compromised mitochondrial function that has caused hypothyroidism and hypoglycemia. He gave me a probiotic that targets mitochondria and should help them function better, and I also have to give myself vitamin B injections twice a week. I also have to cut sugar and caffeine out of my diet, which will be really hard, but worth it. Explains why I can’t drink more than a sip of alcohol! I may need to go on thyroid medication and inject insulin as well, but he wants to try this first.
It’s really refreshing to have some answers that are based on diet changes and vitamins rather than just responding immediately with drugs. I hope it makes a big difference- it makes a lot of sense that it will. Oh- the blood tests that tested the functioning of my mitochondria aren’t covered by OHIP- I guess that’s why doctors haven’t previously bothered to run this…
I’m happy, but pretty overwhelmed, and a little skeptical, just because I’ve had to deal with so much bullshit from the medical system. Injecting myself doesn’t really bother me, but it will definitely be something to get used to. The diet change will be hard- but it’s not my first time cutting out shit that’s not good for my body, and I know how worth it it is. This is probably exactly what was behind my mom’s fibro. I wish she could have gotten more to the bottom of it too.
My family doctor told me I would have to try absolutely every pharmaceutical drug that might possibly help my conditions before signing off on it. I did that. Went to a pain clinic, several specialists. I can’t find a doctor who will sign off.
Kay, so I feel like absolute shit today, but I’m gonna try to just rock my shit anyways.
I have a naturopath/energy therapy appointment at 1:30 (which will be fucking awesome, as per), and I’m thinking of going into town a little early so I can do some reading and sit around in my favourite coffee shop.
After that, I’m going to this big party where a bunch of friends are coming from out of town, including friends all the way from Calgary! We rented a room at one of the conservation areas nearby, so that’ll be cool.
I guess I’ll just take my vitamins, smoke a little weed and get on with my life pretending I don’t feel like my body is ripping itself into pieces…
You can download the full PDF version of Spoon Theory by Christine Miserandino here.
How can one encapsulate the definition of living with chronic fatigue syndrome??
Fatigue is an extreme tiredness, a heavy blanket that grips you, you feel exhausted ALL the time & your brain fuzzes out.
But anything better, to describe it to someone who has no understanding?
My husband understands it all, knows of my suffering with fibro pain but I think the reality of the fatigue elludes him a little.
He knows I get tired, sleep maybe more on certain days……worse fibro fog - but when I explain I can’t do something from CFS or when its early and needing sleep…..sometimes he seems puzzled why, what has made me more tired.
He is not ignorant or unsympathetic, he listens & he accommodating…….but I’d like to really speak to him of how dreadful these things combined can be, so debilitating
Your words, lovely followers?
The way I describe it to people is that it’s a kind of overwhelming, painful tired. Like you’re so physically exhausted that it actually hurts to be awake. Also, when trying to communicate my CFS issues with other folks, I find using spoon theory VERY helpful, especially with my partner and close friends I spend a lot of time with.