21 Things Doctors Don't Tell People About Fibromyalgia


When you are diagnosed with any chronic illness, a good doctor should tell you about the symptoms, inform you of the prognosis and offer ideas for treatment or management of the condition. However, fibromyalgia was formally recognized only a few decades ago, and many doctors are still unfamiliar with the illness and how to treat it. Furthermore, it is difficult to truly understand the physical and emotional symptoms a person with fibromyalgia experiences on a daily basis if you haven’t been through it yourself. This can make it hard for doctors to offer patients a full picture of what life with fibromyalgia might look like after diagnosis.

We asked our Mighty community to share some of the things doctors didn’t tell them about fibromyalgia. Let’s raise awareness and improve our understanding of the illness so doctors can better prepare their patients for the road ahead.

Here’s what the community told us:

1. “They don’t really understand fibro. It varies so much from person to person, and treatment plans are different for everyone, so there are lots of things doctors don’t know about this condition yet.”

2. “You [might] lose friends because you can’t go to every event you used to. But the friends you do keep are amazing and super understanding.”

3. “I actually had a great doctor when I was diagnosed because his wife has it as well. He told me the good, the bad and the ugly. He did also admit that most doctors including himself don’t fully understand it like they should.”

4. “They won’t [always] take other health issues seriously because ‘it’s probably just a symptom of fibromyalgia.’”

5. “There will be people who don’t believe/don’t care about your pain and exhaustion. You [might] have to hide the fact that you are even sick to protect yourself.”

6. “I have yet to have a doctor believe me. They always say I’m too young.”

7. “Most doctors don’t know enough about fibromyalgia to be able to treat it. They didn’t have answers as to why I have so many symptoms or how to manage them. I learned to keep up with current research to educate my doctors and be my own advocate. I learned to pace my activities, and rest when I needed. I learned to trust my instincts more, and not care about offending family, friends or providers with my answers and actions.”

8. “They don’t tell you about the emotions you will have to deal with every single day, the grief for the person you used to be, the guilt you’ll feel every time you let someone down and cancel plans, the fear of the future and the feeling of being a burden to your family. No one emotionally prepared me for life with fibro.”

9. “It affects everything. More than just your body. It will affect your social life, your work life, your love life, etc.”

 

10. “Every person responds to treatment differently. You have to become your own advocate and search out any and all treatments to see if they work for you.”

11. “They don’t tell you sensory overload is a thing and every sound, flashing light and smell can affect you on good days and bad.”

12. “Doctors don’t tell you how hard it will be to do everyday tasks.”

13. “They don’t tell you how likely you are to have other problems because you have fibromyalgia, such as irritable bowel syndrome (IBS), restless legs syndrome (RLS) or anxiety. They don’t realize how hard it is to have this illness.”

14. “Most won’t tell you to find a rheumatologist who specializes in chronic conditions like fibromyalgia; the specialists cost more to visit, but they are knowledgeable about the condition. Also, do your own research on the condition, symptoms and treatments. At the end of the day, you are your best advocate; empower yourself with knowledge any way you can.”

15. “You will never have good quality sleep and will always be tired. You will have a hard time focusing/concentrating on simple tasks which will seem overwhelming at best.”

16. “Meds don’t [always] work, but meditation, music therapy, art and sleep are your best friends!”

17. “I would constantly be questioned by everyone about the validity of my pain, my diagnosis and my treatment plan.”

18. “Some people can get better with natural remedies. Drugs are not the only way to go. I’m not saying natural remedies will cure you. But they can possibly help relieve your symptoms. This may require a total lifestyle overhaul. But anecdotal stories of improvement abound.”

19. “[They don’t prepare you for] the look of confusion and disappointment in your child’s eyes when you tell them you’re too tired or in pain to play with them.”

20. “What is a 10 today [might] be a seven tomorrow because that pain threshold – where you couldn’t possibly take anymore – it keeps shifting and it only goes up.”

21. “There’s a grieving period that differs for everyone… Grieving our former life, emotionally, physically and psychologically. Depression and anxiety happen and can exasperate flares. It is a life-changer, but not a life-ender. Take your time to grieve, then move forward. Find solid support and be honest with yourself and others. It will be OK.”


21 Things Doctors Don't Tell People About Fibromyalgia

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Conquering the Fear of Pain and Loss Due to Illness


I’ve always been very independent, strong-willed, action-oriented, fun-loving and free-spirited. I have vision and drive and lots of optimism – always ready to start a new creative project, go on an adventure or fight for a good cause. Except when I feel ill, and the pain is so bad I think I’ll die soon. I have an autoimmune disease that presents itself in a variety of illnesses and symptoms.

I’m not afraid of dying, I just want to live a long and healthy life like anyone else. I’m afraid of the pain getting worse, because it has been getting worse over the past 15 years. I’m afraid I won’t be able to endure the pain and other symptoms much longer. I’m afraid I won’t be around to experience grandchildren.

But I’m a fighter, always have been. About five years ago I was on disability, but I didn’t want to be. I worked hard to improve my health and get stronger. I did part-time work for a while and gradually started my own online business. I got off disability about two and a half years ago when I had made significant health improvements.

 

Unfortunately, this past year the symptoms of this disease have been the worst yet. Gradually, over the past nine months, the flares of fibromyalgia and the arthritic inflammation have increased in frequency and intensity. Because of weak muscles I fell down my front steps on Christmas Eve, badly spraining my ankle. During the winter, I was constantly dropping things – my hands just had no strength. I broke a toe during the spring, further decreasing my mobility. The pain and inflammation got so bad I couldn’t walk up a few steps, I couldn’t cook, bend over or push a vacuum cleaner. My legs and hips are always swollen and painful. Even now the pain wakes me up several times throughout the night, or prevents me from falling asleep at all.

So, yes, I’m afraid of continuing to live like this. It stops me from living normally. I had to turn down a job offer because I couldn’t do the tasks consistently. I may have to sell my home and move to a better climate, even though I don’t want to and can’t afford to. I’m afraid I may have to go back on disability, because it’s not enough money to live on. I don’t like being dependent on others.

I’ve had health problems since birth. I had colitis and food allergies as a child, as well as scoliosis. These things were small in my mind, minor inconveniences in an otherwise active and happy life.

I’m a creative and adventurous person; normally I’m not afraid to try anything new and fun. I’ve traveled the world and been involved in many types of charitable work. I’ve given birth to and raised three children who are now successful adults. Through it all, there were bouts of pain, illness and fatigue, but I thought that was normal – until 15 years ago when I was diagnosed with Hashimoto’s thyroiditis. It had gone undiagnosed for a long time and my thyroid levels were so low the doctor wondered how I was still alive.

The doctor said I could get better but I needed to be monitored closely for a while. She said it’s an autoimmune disease and other things might develop. I’ve always been into natural health, so I took responsibility for finding solutions. It was just another opportunity to learn and to improve myself.

Working at my health keeps me going. It gives me hope when I find something that helps me feel better. I’ve become an expert on wellness. I’m very strict about my diet, supplements and routines to maximize the health benefits. I’ve been to more specialists and alternative health practitioners than I can count. I’ve tried so many medicines and natural health remedies that I could write a book about it. I meditate, and when I’m not in pain I do yoga.

But nothing has helped during the past nine months and now I’m getting an ulcer from taking too many NSAIDs. I’m also feeling insecure about my future. Doing my online work has become difficult because sitting for long periods is as bad as standing all day. I need to keep moving at gentle intervals, and I need to reduce my workload.

I’m afraid the pain, muscle weakness, tiredness and brain fog will kill me. But I want to live, and get well, and do all the things I love to do. I want to work, I want to support myself, I want to travel and enjoy my family and friends. But I’m so exhausted that I don’t know if I can. It’s a terrible feeling to be gradually getting worse when you’re trying so hard to get better.

I’m still making plans and goals, but I’ve accepted a slower pace; I had no choice. I’m letting people know that I need help, and that I can’t do as much as I used to. I’m researching ways to live more efficiently by reducing cost of living and giving away anything I don’t really need. And I’m putting less pressure on myself by not overexerting on good days. I’m trying to enjoy the little things, like my pets and hobbies, while I still can.

I get depressed because of the relentless pain, the constant conflict of wanting to do more than I can and the insecurity about my future. But I don’t dwell on those thoughts, I focus on solutions instead. The depression is an undercurrent that’s not obvious to others, but it rears its ugly head when I’m alone on painful rainy days.

I do believe my life can still improve, but I must make some hard choices, like selling my home and moving away from family and long-time friends. It will be a new adventure with different challenges and opportunities to learn. Fortunately, that’s what I like about life: discovering new possibilities for living life to the fullest and not letting the fear or pain win.

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Going to the Emergency Room When My Pain Is 'Too Much'


Fibromyalgia, joint hypermobility syndrome and chronic fatigue syndrome all cause some form of pain. However, for me, the worst of them is the pain I get from fibromyalgia.

Most of the time when we are in pain we can take some paracetamol or ibuprofen and the pain dies down. Or if it is particularly bad, we may use opiates such as codeine or tramadol. But what happens when these painkillers do not get rid of the pain? When taking a handful of painkillers is basically like swallowing a handful of smarties?

That’s what life with fibromyalgia is like. I am in constant pain that is not relieved by traditional painkillers, and even the atypical medications prescribed barely touch the surface. I can’t count the amount of times I’ve been told to exercise or meditate instead of taking painkillers. As if these are the magic cure to the excruciating pain experienced by people with chronic illnesses. I cannot count the amount of times I’ve been told this pain is “all in my head” and no one could possibly be in this much pain all the time, or even that I’m too young to be in this much pain. This pain is not in my head – it is very, very real. I would not be asking for help if I didn’t think I needed it. I would not be asking for increasingly stronger painkillers if I had not tried everything in my power to avoid it.

 

I only go to the emergency room when I am absolutely desperate. When I have taken a concoction of medications that would knock most people out. It is very rare when in the ER to find a doctor who understands chronic pain. The trouble with emergency medicine is that they want to find out what is wrong and cure it. The trouble with me is, I already know what is wrong and there is no cure. I just need pain management. But the ER is an absolute last resort, for when I’m sitting in my room in so much pain I cannot bear it anymore. But when I get to the emergency room no one knows what to do with me.

I have a care plan in place that has been set by the Pain Clinic. It states if I attend the ER I am to have IV paracetamol and morphine and to be treated in a kind and understanding manner. You might find it strange that my care plan says “to be treated in a kind and understanding manner;” however, I have been treated so appallingly by some staff that this statement is necessary. I’ve been called an attention-seeker, a drug-seeker and a manipulator. None of these are true. I do not want your attention, I just want you to help me. If I could get by without any drugs then of course I would. Just because I cry and say I wish I was dead does not mean I am manipulative. I come to the ER when I have no other option, when I am desperate. Just because you cannot see my illness does not make it any less real.

The other problem is many doctors do not believe fibromyalgia is a real illness. These views tend to come from older doctors as, when they were trained, illnesses such as fibromyalgia had not been discovered or were still very rare. These doctors are often under the understanding that fibromyalgia is “all in the patient’s head” and that they need psychological help. Of course there are always exceptions to this, and I have found a few older doctors who are understanding and a few younger doctors who do not understand fibromyalgia. All I ask is that when I turn up to the emergency room, I am treated with respect and kindness. That I am not labelled as a drug-seeker, but am instead given the relevant pain medications and cared for like any other patient.

I am so very thankful for the NHS and all the understanding and kind doctors I have seen. I dread to think where I would be without the help of the NHS. This post is not to negate the great work these doctors do, it is simply to explain a side of the NHS not many people see.

Until next time,

Louise xox

Follow this journey on Chronically F***ing Fabulous.

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chronic pain chronicles newspaper article with photos of ottum yates and puja rios

Chronic Spotlight Series: A Conversation With Ottum Yates


When I get signs from the universe, I listen. Like if I can’t decide between watching “House of Cards” or “Game of Thrones,” then an image of Jason Momoa chopping down a tree pops up in my Facebook feed, GOT it is! That’s pretty much how the Chronic Spotlight Series came to be.

Last month, I was humbled and honored to join the cast of This Is My Brave (TIMB), whose mission is to end the stigma of mental illness by sharing personal stories of progress and success. More jaw-dropping than the stories of struggling was the strength of the women who live to share them. I am so inspired by the TIMB community that I’ve decided to shine the spotlight on some incredible warriors within our chronic pain community.

First up in the Chronic Spotlight Series is Ottum Yates. She is one in a million – her heart is big enough to get lost in. Ottum is a wife and mother and a passionate advocate for mental health, chronic pain and authentic living.

chronic pain chronicles newspaper article with photos of ottum yates and puja rios

Ottum, what conditions do you have?

“I have a history of pre-existing psoriasis, hypothyroidism, polycystic ovary syndrome (PCOS) and childhood PTSD. I’ve also been diagnosed with fibromyalgia, Hashimoto’s disease, arthritis, spinal stenosisdegenerative disc disease, neuropathy, migraines, IBS, insomnia, manic depression (bipolar disorder), anxiety, chronic fatigue syndrome and intestinal intussusception. I also had a devastating miscarriage in 2014. Just this year, I was diagnosed with gastroparesis and lupus.”

When were you first diagnosed? Tell us about your experience.

“In 2007, I nearly died after giving birth to our daughter. I lost so much blood that I needed four additional days in the hospital. During my recovery, I began to feel chronic widespread pain consume me. My neck, shoulders, back, hips, knees, feet, arms, fingers, elbows, my head, my chest – everything hurt. Symptoms of nausea, vomiting, insomnia, IBS, anxiety, depression and chronic pain stole my life, my happiness and my freedom.

As a new mom, my family struggled. Hospitalizations, prescription drugs, narcotics, injections, treatments, tests, the withdrawals and therapies only made my physical and mental health worse. Some of them almost killed me and, at times, I wanted to die.

When I was diagnosed with fibromyalgia (2008), the doctor said, ‘You will never be the same.’ She was right.

 

My symptoms progressed and I nearly lost my life again. This time, it was due to adult intestinal intussusception, a very rare condition that typically only affects dogs, infants and one to five percent of adults with an intestinal blockage.

The surgeon suggested my fibromyalgia, stress and dehydration (caused by the excessive amount of prescribed narcotics for pain) was the cause.”

What has been your highest high and lowest low since being diagnosed?

“My highest high since being diagnosed was becoming a wife and mother. Our daughter doesn’t remember or know me as a ‘healthy’ or ‘normal’ mom. Instead, she knows me as sick, not feeling well and disabled. My daughter is my muse. Her love, compassion and fresh perspectives give me hope. She sees me as brave, strong and resilient.

My husband – my best friend and soulmate – has stood by me and loved me for 16 years. His deep love has carried me through it all. I’ve lost pieces of myself throughout this journey, yet my partner – my heart – has never wavered with his love and support.

My lowest low since being diagnosed was my miscarriage in 2014.”

Ottum, what’s in your survival kit?

– My Emotional Support Animal, our Maltipoo.

– My online and social media community, my tribe.

– SPAcific Essentials Cherry Pit Stone Thermal Pillow

– U Pillow

– Medical Marijuana/Edibles

– MED Evaluations

– Creams and Balms

– Anxiety Blob

– Music and/or Meditation App (Spotify/Headspace)

– Massage, cupping, and/or water therapies

– My favorite #SelfCare treats

– Art Therapy (follow @dankcanvas)”

What are the most unexpected side-effects no one told you to expect?

“In addition to the disabling depression, anxiety and isolation, I wasn’t prepared for the effects of and the loss of relationships with friends and family. Also, being in a constant state of ‘survival mode.’ There’s guilt, loss and grief over losing who ‘I’ used to be and it takes patience, time and effort to learn who ‘I’ am now.”

Ottum, what’s your daily routine?

– My daily routine consists of this mindset: Lean into the uncomfortable and just show up.

– Any attempt is an accomplishment when you’re sick.

– It’s OK not to be OK.

– Just show up.

– I do what I can when I am able.”

What is your coming out story? How did you tell people about your conditions and how did they react?

“Sharing my painfully beautiful story has saved my life. On a journey that has been overwhelming and exhausting, talking about it has given me hope and comfort. You can find my story here, or you can watch my This Is My Brave performance here.”

How did you and Puja get to know each other?

“I found Puja when she released her first piece, Me vs. Fibromyalgia: Part 1. It was the first time I had ever read anything from a woman who shared such similar struggles with fibromyalgia.

I have ‘followed,’ shared, liked, loved, cried and laughed with Puja through Facebook now for over a year. After sharing my story with This Is My Brave, I had the honor and pleasure of asking Puja to share her own story with TIMB Chicagoland, and she did!

The rest is history.

Puja is my friend and shero.”

What is your personal mission and what do you do to #ShoutAboutPain?

“My personal mission is to help create a community that thrives on hope and comfort by sharing stories. Everyone has a story. I share my story to #ShoutAboutPain.”

Ottum, thank you from the bottom of my heart. You’re my shero too! With people like you standing up for those in our community without a voice, big things are on the horizon.

Interested in sharing your story too? Contact me at [email protected].

This post originally appeared on The Huffington Post.

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Thank You to the High School That Has Accommodated My Disabilities


Dear Calabasas High School,

Words cannot describe how lucky I am to have gotten the opportunity to attend CHS. When I was in eighth grade, I decided I wanted to go to a small, private high school. After a year and a half of attending that school, I realized how miserable I was. I did not have many friends and the school was just too small for me. In the middle of my sophomore year, I decided to transfer to Calabasas High. I had so many questions going through my head when I decided to switch schools: “Will I be OK in a public high school?” “Am I going to make friends?” “Is this decision a big mistake?”

My parents were completely supportive of my decision to transfer to Calabasas High. A few days after I told them I wanted to transfer, we informed my private high school of my decision and I left. My parents then called Calabasas High and started filling out all of the paperwork.

On my first day of school at Calabasas, I was welcomed by a Peer Support member, Sarah Staitman. Sarah gave me a tour of the school, answered all of my questions, helped me set my locker up and let me know she was always there if I needed anything. This first impression changed the way I viewed high school and my life. I no longer felt like I did not fit in. From this point on, I looked forward to getting up and going to school every day.

 

Another reason why I am so grateful to Calabasas High is for their help accommodating me with my disabilities. I have fibromyalgia, which is a chronic illness that causes me to be in pain and fatigue constantly. CHS has helped me in every way possible, from offering support periods to meet with teachers to perform make-up assignments to having a staff and administration that has always been by my side to ask me how I am doing. Calabasas High has created an environment in which I feel safe to be myself, even with my disabilities. Over the past few years, my condition has gotten worse. With the help of my teachers and counselors, I have been able to keep up with my work, stay in school, get into college and will be graduating this month.

The students at CHS have also always been accepting and compassionate. Due to my sensory processing disorder, I have trouble staying focused in class and need certain tools in order to be successful. One of the tools is a stuffed animal I always bring to class. My classmates have never judged me or made fun of me because of my disabilities or differences. Instead, they have been understanding and have always included me. This feeling of embrace even with my struggles has helped me, especially during these challenging times when I do not feel well.

To anyone out there whom is experiencing anything similar to my situation as far as disabilities go: I hope you find your Calabasas High School. Find a place that will make sure you succeed, will listen to you and will help you. Do not give up; you will find your place.

Thank you for everything, Calabasas High School. I will always be a Coyote at heart.

Love,

Lisa Friedman, Class of 2017

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To My Significant Other: Thank You for Your Unwavering Support


You came into my life as things were crashing down all around me. As I was wandering through the stormy, starless night you arrived. As bright as a beacon, you were a lighthouse on calm shores. It was a very tumultuous and transitory period for me, and suddenly there you were. I got the sense you understood me, even though our paths in life had been so very different. I think you knew I understood you, too. I instantly felt as though I had known you a very long time. Human connection is funny that way.

I told you about my chronic illness, the battles I’d fought, but that was insignificant in your eyes. You saw beauty and life where I saw nothing but a sick person trying to make it through another day. The truth is, you have seen me at my absolute worst. You have witnessed me crawl on all fours to the bathroom because it hurt too much to walk. You have seen me cry in agony. You have watched me mourn the loss of a life once lived, the life of a “healthy” person.

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In spite of everything you have seen me through, your loving kindness and support has never wavered. You sat on the hard, cold, tile floor while I lay motionless in the bathtub. You have held me as I cried out in pain. You have carried me through the house, across parking lots, up flights of stairs. You sat and listened to me vent about how frustrating it can be to be me. Oh, how lucky I am to have you.

Above all, you have shown me the depths of unconditional love. A romantic love I am surely not accustomed to. One night, after a particularly heinous day, I looked up at you, my eyes full of tears. I told you I was so sorry. Sorry you had no idea what you were signing up for when you met me. You looked steadfastly back at me, with those gentle eyes like windows into your soul and said, “I know exactly what I signed up for. I signed up for you.”

Thank you, thank you, thank you for being so wonderful. You are the ever-burning light in the dark, so that when I am lost I can find my way.

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