What People Don't Realize You're Doing Because You Have Fibromyalgia

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What It's Like to Be Diagnosed With Multiple Illnesses in Your 20s

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There I was, sitting in my doctor’s office up on the examination table with my short legs swinging over the side while I waited on my doctor to read my lab results and explain what they meant. I finally get an explanation for the back and leg pain I’ve experienced since I was 9 years old. I would now know why my energy seemed to simply slip away from me unexpectedly. There would finally be a name for this condition that plagued me with daily pain, almost constant fatigue and an intractable melancholy I just could never shake. My doctor looked up from the thin pale folder with sympathetic eyes, knowing how many years I’ve had questions and gone through appointments with other mystified diagnosticians who sent me on my way with more questions, more confusion and less money than I had walked into their offices with. After one deep breath she says, “The test results show rheumatoid arthritis and I suspect you also have fibromyalgia.” She grabs a tissue as the tears began to instantly fall from my eyes.

Now I take a deep breath and shudder. My first words were, “So I am not ‘crazy.’ It’s not ‘all in my head.’ My pain shows up in my blood. My pain shows up on an x-ray. My pain has a name.” Oddly, first a wave of relief washed over me. Then I started to ask questions. I start to ask about what I should expect, my prognosis, the best and worst possibilities, how I should expect my life to change and treatment options. I ran headlong into this wall of information and very quickly my emotions overwhelm me and I crumple. I lean, tilt and almost physically fall as my sense of normalcy slides away. The doctor hands me some pamphlets and says to come back in a couple of weeks so we can review the rest of my blood work. I am in shock. I know this because I can’t find my way back to the nurse’s desk or the exit. A lab technician had to show me the way.

Thank God for cell phones and friends who are in standby for the aftermath of doctor visits… My best friend barely said “hello” before I dissolved into tears. One garbled sentence after sentence riddled with fear flows out. We both struggle to see the bright side or to find a silver lining. At least it’s treatable. At least I have health insurance. At least now we know there’s a diagnosis, a word for the pain, fatigue and unexplained fevers, the reason my joints ache every single day. That day changed every day that came after it.

As soon as I got home I started doing my internet research and saw that I could lose the use of my hands, my legs or even my sight from rheumatoid arthritis. I realized the digestive problems I have experienced since childhood are related to the fibromyalgia. I was relieved to find that those days when I had a word on the tip of my tongue all day but couldn’t remember it were due to the brain fog that comes with fibromyalgia. It finally made sense that my 28-year-old body felt so much older!

Along with relief came anger. This huge wave of anger washed over for every time I was told I was lazy as a kid, for every time a doctor told me to lose weight or that I was just stressed out. The anger grew as I recalled the countless hours of fear and anxiety I spent waiting in doctor’s offices. Being sick without a proper diagnosis or treatment makes you feel vulnerable and powerless in a way that can’t be expressed with words. Illness is as human a condition as any of us will ever experience.

Now, looking back at that day over a decade later, I know that no article, no blog post, no words from even the most educated and caring of doctors could have prepared me for the journey ahead. There are days when I am sick of taking my meds. There are days when I just want to dance and sway to one song after the other without worrying about my back, knees or hips. And there are days when I don’t make it out of bed and I am so grateful for food delivery. Yet I’ve lived my dream of moving to New York City and living in Harlem. I traveled through eight cities in Northern Italy while on tour when I was a back-up singer in a soul band. I’ve been married and divorced. I continue working in a field I enjoy. The diagnosis altered my life but it didn’t end it. Some days I limp. Some days I strut. But every day I slay!

woman wearing red lipstick and smiling

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18 Things People With Fibromyalgia Want to Post on Facebook, but Don't

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Sometimes it may seem like your friends are using Facebook as a “highlight reel,” only showing the best parts of their lives. So it’s understandable that if you have fibromyalgia, you may not always share the difficult truths about what your days are like. It can be hard to share when you’re not sure if you’ll get the supportive responses you hoped for.

To reveal the important truths people should know about their loved ones with fibromyalgia, we asked our Mighty community to share a post they want to write on Facebook, but don’t. Even if those with fibromyalgia “seem fine” on the outside, these are the challenges they may be dealing with behind the scenes. Friends, reach out and let them know you support them.

Here’s what the community told us:

1. “Please stop comparing me to other ill people. I can’t handle the stress of not feeling like I’m ‘sick’ enough to be important or noticed for my illness. I’m constantly apologizing for an illness that isn’t my fault, and I shouldn’t have to.”

2. “I’m tired! I’m tired of being sick, I’m tired of being in pain, I’m tired of feeling like shit, I’m tired of feeling guilty, I’m tired of not being normal, I’m tired of doctor’s visits, I’m tired of blood work, I’m tired of ‘your test came back normal,’ I’m tired of ‘try this medication,’ I’m tired of side effects, I’m tired of not feeling better! I’m just tired!”

3. “I barely talk about it. I’m in pain 24/7. There is no moment that I’m not in pain. If you see a post where I’m saying I’m having an awesome day and I’m playing in the garden with the rabbits – I’m in pain.  If I’m posting a picture of my dog – I’m in pain. If I’m just sharing a link – I’m in pain. I’m likely posting as normal like I am now, but in reality I am curled up on the sofa feeling pain in so many places it blends to a blur.”

4. “I’m exhausted. A lot of people don’t realize the difference between constant exhaustion and just being tired. Also, [I don’t post] anything about fibromyalgia really because some people still don’t believe it’s a real illness.”

5. “I actually am trying to be better about being honest with how I really feel. But the truth is I can’t even put it into words when I try. I feel like saying ‘I hurt’ or ‘I’m tired’ just don’t cut it. The honest truth is lately every inch of my body hurts. Even trying to give me a back rub is painful and makes me want to cry. I feel like when I say ‘I hurt’ it sounds too much like what everyone feels, everyone has aches and pains, but this is so much more than just a little soreness.”

6. “I know I’m supposed to lose weight and move more, but sometimes I’m just in too much pain and doing anything hurts, but no one understands. I appreciate your advice, but just walk a day in my shoes.”

7. “People need to stop trying to solve my illness. We are doing everything we can. I have great doctors. We don’t even have a clear cause and etiology of fibro. There are currently not many solutions.”

8.I’m constantly asking myself, ‘Would a future employer be able to see this post and my acknowledgement of having a disability and use that against hiring me?’ Though it’s illegal, they can always use ‘alternative facts’ or reasons to not hire but there may be some truth in [that they didn’t] hire someone with a disability.”

9. “[I don’t post] the fact that I have it in the first place. I’ve gotten all of the typical hurtful responses to fibro from the people closest to me who I have told, who misunderstand or underestimate my illness, so I know I will get those kinds of responses even worse from Facebook friends. So I don’t even share about it on social media. I think at this point I would rather just keep it to myself than continue to bear that frustration.”

10. “I’m tired of being interrogated when I call my doctor to refill my pain medicine. Even though I only call when I’m desperate, even though I’ve agreed to a lower dose, I am treated as if I’m drug seeking! I shouldn’t have to fight to keep my pain manageable enough so I can live my life.”

11. “Although I look like a regular 25-year-old, I’m not. Don’t judge me when I squat in the supermarket to relieve my back pain and make sure I don’t faint from exhaustion. Don’t judge me when I complain about pain — if I’m complaining its really bad since I have it 24/7. Don’t judge me for pulling out of an evening out last-minute. Don’t judge me for struggling to find work because I have to be honest and tell people about my problems. I guess overall I just want people to understand there is a real problem and to let me deal with it the best I can.”

12. “I wish healthy people would stop asking me to take this, take that, push myself on and on! After all these years with fibro and chronic severe back pain, under three specialists’ care, believe me we’ve tried everything!”

13. “I am 6 feet tall, 280 pounds — when I tell you that you are hurting me when you are just resting your hand and arm on my shoulder, it hurts and I am not a big baby.”

14. “I feel guilty for having to explain to my girls why I’m just too exhausted to cook tea or do something other than watch movies. I miss out on friendships and have to cancel plans. I would love to go to work and actually have a life. No one would choose to live the way we do.”

15. “I’m not making it up. I really want to go out and be with friends and family. I miss having fun.”

16. “Some days there is just no being positive. I’m not swimming in my own self-pity, it’s just that this sucks. There is no good part. There is no silver lining or lesson. There is no reason for this. It is just how things are. This is not how I imagined my life panning out. But now that this is my normal, I’m doing my best. Some days, that means not being positive and expressing how I really feel.”

17. “Pain takes over my life and limits my ability to do day-to-day tasks. When I post something like this and then go about doing my tasks, people assume I am making a big deal of the pain and that it is a natural progression of the human body, like menopause or aging.”

18. “I had such a good time today… now I will feel the effects for the next week or so.”


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Why I Don't Consider My Fibromyalgia to Be a Stroke of 'Bad Luck'

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My last post garnered such an overwhelming response it made my head spin – in a good way! (Check it out here.) I’m sure some of you thought, Boy, I wouldn’t wish this illness on anyone, or that getting this illness is some serious bad luck – but there’s more to that story.

I must admit, for years I wondered why the powers that be chose for me to have fibromyalgia, chronic pain, chronic fatigue syndrome and Sjögren’s syndrome. The feelings of isolation, pain and being removed from the world and the constant testing of new treatments was overwhelming and exhausting. It was impossible not to think, “Why me?” when things got really bad – when my hands were too stiff to hold a spoon or I couldn’t get up a flight of stairs.

Fast forward nine years and, truth be told, my illnesses have actually had a lot of benefits for me, my family and my life in general.

Here are four reasons why I don’t think getting fibro was “bad luck” for me:

1. Closer relationships. I’m closer now than ever to my husband and family. When we all spend time together, it is truly quality time. Because of my condition, if I’m going to enjoy company after a long day at work, we’re going to be doing something relaxing and easy. My husband and I spend most weekends laying low at home together and I love every minute.

2. I’m a stronger employee. I go like a machine during the day. During my mandated restful weeknights and weekends I spend extra time on my work. This allows me to be available to my team, catch up on the day’s tasks and read up on the latest ideas and fresh perspectives in my field. This makes me a better leader. I don’t know that I would be where I am in my career if it wasn’t for the mandatory rest required after work.

3. I’m a healthier person. Because of my fibro, a few things aren’t up for debate. I make sure I get enough sleep, eat well and have regularly scheduled doctor appointments for prevention and maintenance. I have talked about being 90 percent vegan in a few of my previous posts and will say it again now – clean eating is a necessity with my illnesses. Sugar, caffeine, too many carbs and processed food send my body into a downward spiral and it can take a lot to get back on track.

4. I’m a patient advocate. This has been my biggest reward by far. Helping others is the best gift anyone could ask for. And let’s call a spade a spade: the chronic illness community is amazing! I strive to be the best voice I can for those of you struggling in silence and I’m honored to continue to do so.

Maybe the luck of the Irish is on my side after all… I see a pot of gold at the end of my rainbow.

What good things has your condition brought your way? Maybe you have a therapy pet or you’ve made friendships through the chronic pain community? What do you use your extra downtime for? Let us know in the comments below!

“May your thoughts be as glad as the shamrocks. May your heart be as light as a song. May each day bring you bright, happy hours that stay with you all the year long.” –Anonymous

This post originally appeared on The Huffington Post.

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Thinkstock photo via joto.

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Facing the Future as a College Senior With Fibromyalgia

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It’s 2:13 p.m. and all I’ve managed to do today is get out of bed and shower. I want to go to class, I want to go outside and run, but the pain shooting down my neck is an ever-present reminder of my fibromyalgia.

The words to describe my feelings about this are really first-tier words: it’s simple some days. Today I feel sad. I’m not even angry or frustrated, just sad I can’t get my body to do the things I wish I could do. I spend a lot of time wishing these days – wishing I could eat the sugary, fatty foods I love so much, wishing things could go back to the way they used to be, wishing my medicine would work properly, wishing so much of my income wasn’t being used for healthcare reasons.

I’m a senior, in my last semester at the wonderful University of Texas, with what I call an “invisible” disability. No one walking by me would know I only sleep four hours at night because pain keeps me up. Those guys that check me out have no idea what they would be getting themselves into if they chose to date me. Instead of walks along the lake, they would probably be cooking dinner for me and doing my laundry because on some days I can’t do it myself.

Today is my second to last day at a job I have loved. This is the third job I’ve had to quit because I simply can’t keep up. It’s hard for me to acknowledge that, but between balancing 15 hours, doctor appointments and daily pain it has become nearly impossible to not feel like I am drowning.

I’ve learned to stop comparing myself to my classmates. Though difficult at times, I have to remind myself that most of them are not struggling with daily pain and flare-ups so intense all I can do is lie in bed and cry. I have to remind myself that my professors don’t understand and that all I can do is help them understand. If I explain my condition and they still think I’m a slacker…well, there is not much I can do about that.

My major is Youth and Community Studies with a minor in Social Work. These days I spend more time regretting my major than being excited about the possibilities. How many people who go into education or social work have the flexibility I need? Not any that I know – all my friends with the nice, flexible commuter jobs are computer science majors or engineers. But had I known four years ago that I would be diagnosed with fibromyalgia my senior year, I’m not sure I would have changed things – maybe just my expectations.

Thinking about the future gives me so much anxiety I’ve decided to just live life one day at a time. Is life over for me? The life I expected to have is, but I have also come to see that with each closing door comes the opportunity to open doors I’ve been too afraid to open. Fear is my biggest enemy; it’s constantly nagging at me, telling me all the things I can’t do and how I am going to fail, but I can’t listen to it or else even on my good days I wouldn’t get out of bed.

Am I happy? I am overjoyed; sometimes I’m so happy I can’t believe this is my life. Those nights when I am with my roommates and we just giggle over dumb things. The days when I can go outside and see the bright Texas sunshine and feel the heat on my skin. The days when I am in my room crying in bed because the pain is so intense, but know I am loved not because I can do things, but because I am human. The days when I can share the joy and love I have experienced with others…those are the days that bring me happiness.

I have found the secret to my contentment: to love God and to love people, to place my hope not in myself but in the one who created me. This isn’t an endorsement of Christianity – it’s just my life as a senior in college and how I learned to hope when there seemed no earthly reason to hope.

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Thinkstock photo via monkeybusinessimages.

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20 Photos That Show What Fibromyalgia Really Looks Like

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Fibromyalgia is typically thought of as an “invisible” illness. But what if you look closer? What’s going on behind the brave face, the body that to others appears “fine?” Often, it’s days spent on the couch, feeling too nauseated to eat, excruciating nerve pain, and pushing through it all while few people see your struggle — that’s what fibromyalgia looks like.

We partnered with the National Fibromyalgia Association to ask our followers to share a photo of what their fibromyalgia looks like, and what symptoms they were experiencing in the photo. Though others may think you “don’t look sick,” if they take a closer look, the pain, fatigue, and strength it takes to get through it all becomes clear.

Here’s what the community shared with us:

1. “We had to leave about 10 minutes after this photo was taken because of the excruciating pain I had throughout my entire body. I was ecstatic when a part of my body would go numb so I had a little reprieve from the pain for a few minutes. My hands couldn’t grip a bottle of water, I could feel every step I took throughout my entire body. I was on sensory overload, flashing lights causing a terrible headache and the noise causing my shoulders/neck to tense up. All while having 11 medications in my system, including Tramadol. If we get to go again, I’ll have to get a wheelchair.”

man and woman at disneyland

2. “In this picture my service dog is actively tasking. She has alerted to my problems with balance, either a sign of weakness from fibro or an oncoming syncope episode, is giving pain relief to my aching feet and ankles, and is warming my feet due to a Raynaud’s flare up. Fibro has taken my independence, and now I depend on various medical equipment, medications, family/friends, and mostly my service dog to stay safe. I’d be homebound without my dog most days.”

service dog lying at woman's feet

3. “This is my life with fibro… nerve pain, nausea and exhaustion.”

man lying on couch with cat and dog

4. “This my wife all day in bed. She’s in pain all the time.”

woman lying in bed with white dog

5.Migraine, fatigue, bone-deep pain, nerve pain, brain fog, too weak to sit up or stand, cold sweats, severe abdominal cramps, severely nauseated.”

woman wearing glasses lying on pillow

6. “Fourth day of migraine, nerves are pinging, right leg and arm are numb/weak, and the pain is screaming at me from every fiber of my being. Nothing seems to relieve my symptoms, but I will continue with heat packs and kitty cuddles. Trying to tempt my body to be still. Even the dark and quiet of night is loud and obtrusive for me most nights…”

  woman wearing black tank top

7. “Exhausted, surrounded by stuff because I have to rearrange my room. Not for fun, but because my neighbor likes to blare his music just loud enough that the vibrations exacerbate my pain (dorm life FTW). I got so fed up today I used all my spoons to move my bed to the furthest wall…”

woman in dorm room with things on floor and coming out of closet

8. “What you see on the outside: A woman smiling and healthy. But on the inside there is a woman who didn’t go to sleep until around 3 a.m. because the pain wouldn’t stop. A woman who pushes through the tears to have a normal day just so I can spend the next in bed recovering. This smiling woman in the picture is me, and at the moment it was taken I am standing in front of the hospital. (They had a living nativity for Christmas.) I had more tests.”

woman standing in front of enclosure with goats

9. “This is what fibromyalgia ‘looks like.’ The last few months I’ve been feeling pretty good, but these last few days I’ve been battling massive fatigue. I’m ready to go back to bed, before I even get out of bed. Last night I slept 10 hours and took two hours to get out of bed this morning. My body has been stiff and achey to where I can barely move around my house to get anything done… my elbows are also getting pressure around the funny bone, making my arms feel like they’re losing circulation.”

young woman wearing striped shirt

10. “I was at a friend’s birthday gathering a few days ago… was so fatigued that the pool table started to look like a comfortable bed. And I was overheating and had a fever. I struggled to stand… And I struggled to keep the happy ‘I’m OK’ mask on… but I didn’t want to let all my friends down so I forced myself to participate. Then towards the end of the night I started to fall asleep so my fiancé took me home in a taxi. The next day I was so exhausted and in a lot of pain.”

woman standing behind pool table

11. “Trying to figure out how to get through the fog and pain to reach the end of the day having achieved something.”

man lying on couch on pillow

12. “When I try to massage some of my horrible muscle knots, this is what happens.”

woman showing bruises on her arm

13. “I was diagnosed fibromyalgia in 2011. This is a picture of me and I hardly ever work out because the pain is too much. All of this was gained from carrying tension and clenching from the horrible pain every single day. My fiancee thinks I’m strong and capable of anything, but she and no one else knows how much I mentally and physically suffer every day, feeling like I’m moving in slow motion through a painful forgetful fog.”

man with buzz cut not wearing shirt

14. “Local flare-up, sore and painful.”

woman's arm with red swollen patch

15. “This is the invisible side of fibro — the side most don’t see. It’s a heating pad and a fan going at the same time. It’s having a book to read when painsomnia keeps me awake. It’s a notepad for things I think of at night because I won’t remember them in the morning. It’s having a morning and a night pill box because I can’t remember if I’ve taken my meds without them and an alarm. It’s Neosporin and Vasoline for the anxiety-picked fingers… It’s dust on the lamp because I don’t have the energy to keep up with every little aspect of cleaning like I used to. It’s all of this and so much more.”

table of pills, fan, books, notepad

16. “I’m choosing to show this ‘healthy’-looking photo of me from yesterday because the reality is that I don’t look sick. I almost never look sick. And that’s the worst part of this debilitating disease I’ve had for nine years — trying to explain to people how I can look ‘just fine’ while being so completely miserable. Trying to explain why I’m in twisting, agonizing pain that never goes away while looking ‘normal’ is a struggle in of itself.”

woman with long black hair and orange sweater

17. “Nasty bruises.”

woman's leg with bruises

18. “The face of [fibromyalgia]… is a face that hides what the body is feeling. I look like nothing is wrong. But I’ve just gotten out of the hospital because the medicine for FMS has made me so sick they had to take me off everything I take. Which was worse, the FMS pain or the pain from the side effects of medicine? But I smile, I push through, I work, I do everything I can to ‘look’ normal. The face, the smile, all just a lie for what dwells beneath. Pain, frustration, anxiety, fear, alone in the struggle.”

woman with short blonde hair

19. “Having to wear soft pants because rough fabrics like denim hurt my legs too much and having to use a wheelchair because the pain is too excruciating to walk.”

woman's legs wearing sweatpants in wheelchair

20. “Fibromyalgia is complete exhaustion, body and soul. It’s wanting desperately to go out and enjoy the sun but instead having to rest because if you don’t now, you won’t recover later.”

woman lying on bed covered in blanket

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