When I was first diagnosed with fibromyalgia in 2001, it was not a popular diagnosis. I did not fit the criteria. I was 21 years old and it took 50 doctors and 2 years of visits to get down to why I wasn’t getting better after a broken pelvis. I am forever thankful for a friendly chiropractor who sent me to the Mayo clinic.
The day I was diagnosed I remember thinking, terrified, that I had spent my last penny getting there. This was my last hope. I was so nervous. This rheumatologist walks in, does a physical exam for all of 3 minutes which has me in hysterics, and reads over this 20 page questionnaire he had me fill out prior to coming. He looks up, says, “yep you have fibromyalgia, you need to sleep better.
Here’s 50mg of Amitriptyline, I’ll see you in 6 months.” And promptly leaves the room. I had just traveled to see this guy. I was in agony. And I need to SLEEP?! It would be many more years before I slept properly again.
Fibromyalgia? Its All in your head, Things only Dinosaur says
A month later, I bought every book I could find on fibromyalgia. I made my family read them. I’ll never forget the night I had dinner at my brother’s house. He had just finished Fibromyalgia For Dummies. He said, “so it’s all in your head?!” I didn’t talk to him for 6 months. He left messages…“it’s your Central Nervous System sister… It’s in your head. That’s all I meant!” I was too mad.
Already too many people had dismissed me. My mother and I have had years of distance due to this disease and her judgements on my choices. I will admit to choosing myself. I will admit to choosing my bed. Because I have to.
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I say all this because the medical community has done is a great disservice here. It’s too easy to use Fibromyalgia as a diagnosis of exclusion versus actually following the protocol. Do not ever fall for that. If you do not fit the criteria, keep pushing. The last thing you want is this label, believe me. For those of us who do fit it to a T, you must be your best advocate. You must read every book, article, publication…
You can get your hands on. Rest assured your doctor isn’t. Know your body, know your symptoms, know your Illness and most of all, be strong in what you will and won’t settle for. You have that right. Fibromyalgia does not make you less. Nothing can. Each and every one of us beautiful creatures was put here for something.
Too many of us have to rely on our own bodies, minds, families, and fragile social structures to help us to feel better on a daily basis. Often, we are so weakened by external forces like work, friends, family and chores that we don’t trust our own bodies anymore. We wake in the mornings and do our system checks. I find myself listing the few parts that do not hurt before I get out of bed. I get up, do my housework and crash less than an hour later. It is the strength of my fellow Fibromytes that gets me through many of my worst days.
The emotional pushes I get when I log into my Facebook and see that I am not alone, I am not the only one that lives like this. I have joined a community of the 45,000 strong,the brave, the fibro fighter on facebook group “Living with fibromyalgia and Chronic illness” Those are the things I know I need to have a smile on my face in the evenings when my man comes home from work. When we have doctors, family and friends that doubt us we are forced to fight. After years of fighting, I know I for one am very tired of it. I will not allow more negativity to bring me down, especially not coming from those people meant to help me.
Tell me one last thing,” said Harry. “Is this real? Or has this been happening inside my head?”
“Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?
-J.K. Rowling, Harry Potter and the Deathly Hallows (Harry Potter, #7)
It is our responsibility to ensure that our world is only filled with those people who will support us. I know that sounds much easier said than done, but it truly isn’t. Ridding yourself of people who don’t support you is a blessing and not a hardship. Those people are not happy in your life either. They are speaking to you out of their own frustration with you or your illness.
I’ve made it very clear to everyone who stays in my life that I will get worse, not better. I will suffer every day. I will whine like a baby and cry out for my mommy sometimes and you will either get with the program and deal with it or get the heck out of my life! I don’t have time or energy to stroke anyone’s ego. It truly is all about me, and guess what? I am ok with that. So is anyone who stays. It has to be.
Related Article: Fibromyalgia is Not all in your heads, Research Confirmed
It is our right to refuse a treatment and refuse care from rude, unsympathetic, or uncooperative doctors as well. I’m not telling you to go in and demand pain pills and keep doctor shopping until you get them. Don’t hear that, but if your doctor is flat not helping, but rather hurting… Don’t let him/her be your doctor. I just fired mine.
“It’s all in the mind”
Saying that fibromyalgia is “all in the mind” isn’t entirely wrong, concludes Dr. Berenger.
“Pain pathways and centers are in the brain. And we can employ techniques like mindfulness and biofeedback to control pain,” he says. “However, it’s more helpful — and accurate — to consider it a neurogenic disorder.”
You don’t look ill
Our another contributor Hannah Eleri Davies via The Pain Princess added to it that On a good day no one would be able to guess that I’m ill. I have rosy cheeks, long, thick and naturally curly red hair and long, strong natural nails. Apart from carrying a few extra pounds I am the picture of health. I may even choose not to use my walking stick for short distances. You could be forgiven for thinking I was perfectly fine from photographs of me smiling with my friends.
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People with chronic pain conditions are very good at hiding behind a mask of serenity. If you look fine, people don’t question it, in my experiences people don’t question you when you don’t look fine either.When I see myself in the mirror or in photographs I am unrecognizable from the mental image I have of myself. In my head I look frail, weak and emaciated. My bones protrude through my skin. I am pale with hollow cheeks. My hair is thin and greasy and my skin is dotted with spots.
I am a walking contradiction. I look strong but I feel weak. Regularly it feels like my legs will give way because they can no longer hold me up. I feel dizzy and faint most days and my hands shake.
I look young but I feel old. There is a reason I’ve nicknamed fibromyalgia “body of an eighty year old syndrome.” At 20 I should be the best version of myself I’ll ever be.
I should be fit and energetic. I should be able to run up stairs with ease. Instead I have to crawl up each step on all fours, taking a break in the middle before hauling myself to the top where I am breathless and in pain. I should be going out with friends on the weekend, or going to university, or working full time. Instead I volunteer part time when I can, but I have to take long periods of time off. I spend all weekend in bed most weeks, recovering from the week.
I look healthy but I am sick! People don’t see the supports I wear on my back, knees, ankles and wrists, they don’t see how much medication I have to take just to get up out of bed everyday. You can’t see the pains throughout my body every minute of everyday. You don’t hear me being sick or see me crying. You can’t see the world through my eyes where every object is a hazard for pain. You can’t see all the calculations I make every day for the simplest of jobs.
Every time I get dressed I think of fibro. Every time I go out I think of fibro. Every time I sleep I think of fibro. It is constant and relentless.
Everything I do, I do with fibromyalgia in mind. So if you say “if you can’t do….how can you…” The answer is because I know my body. I know what I can and can’t do. I asses every movement for pain. So please don’t question the judgment of those who live their lives in pain. Our bodies give us a hard time everyday, we really don’t need it from anyone else..
If it was all in our head don’t you think I would choose to be, healthy, happy and Rich, Instead of sick, sore, miserable and unable to work? Fibromyalgia Hope for Cure
Fibromyalgia Awareness Store: With so many people across the world affected by the pain, fatigue and brain fog of fibro, it is critical we raise awareness of the condition.Along with speaking, lets spread out fibromyalgia awareness with some others means, let the things speak out it self. Like you can have customized T-Shirts, Mugs, Stickers, Pants, Mobile Covers, Socks, Wall Tapestry. Click Here to visit the Store
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References:
- Why Fibromyalgia Is Neuropathic by Rebecca Perkins via Fibromyalgia Resources
- You Don’t look Illl by Hannah Eleri Davies via The Pain Princess