123 posts in the category “Fibromyalgia”

Let’s make fibromyalgia visible today

Posted May 12th, 2017 by

Fibromyalgia awareness day

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.”

-PatientsLikeMe member living with fibromyalgia

“I am so tired of the ‘but you don’t look sick’ comments.”

-PatientsLikeMe member with fibromyalgia

“I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.”

-PatientsLikeMe member with fibromyalgia

This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women.

Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with fibromyalgia, wrote an open letter to the “normals” describing what it’s like to live with a chronic pain condition while dispelling myths that often surround it.

Letter to the normals

 “We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as ‘flaky’ especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice”.

 

Check out Craig’s full open letter to the normals here.

 

So, how can someone with fibromyalgia improve their quality of life? According to the Centers for Disease Control and Prevention (CDC), there are a few things that people living with fibromyalgia can do – namely, exercise.

  • Get active – The CDC suggests physical activity can help improve symptoms of fibromyalgia, including pain, sleep problems and fatigue. It can also reduce the risk of developing other chronic diseases like heart disease and diabetes. However, physical activity can be extremely challenging for those living with chronic pain, so the CDC advises to start slowly and gradually increase your activity level. It can be as small as doing some stretches in bed each morning. They also have a list of recommended exercise programs which you can read more about here.
  • Self-management education – learning more about your condition can help you gain better control over managing your symptoms. Joining sites like PatientsLikeMe to learn about yourself and others like you can help you better understand life with you condition. The CDC also has a list of recommended self-management education programs.

There are more than 3,000 topics in the fibromyalgia forum tagged with “exercise”. Join the discussion!

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Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

………………………………………………………………………………………………………………………………………………………………………………

Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

………………………………………………………………………………………………………………………………………………………………………………

Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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Food for thought: healthy eating in 2016

Posted January 27th, 2016 by

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below:

“I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.”

-MS member  

“I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!”

-Fibromyalgia member

“My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.”

-Major Depressive Disorder member

“I’ve been gluten free since Sept. 2015. I have felt better. I have also added gradually, vitamins and supplements. The most important one being D3. I now am day 3 of 5000iu D3 daily. I also take Omega 3/fish oil daily. Added calcium, C Complex, magnesium, Acetyl L Carnitine, CoQ-10, and B, Glucosamine & Chondroitin. I’m better than I was, more energy, less pain, and IBS is way better. I’m saying this works for me. Consult your doctor before going this route. Looking forward to my best year in a very long time.”

-Fibromyalgia member 

“Since I found out I have MS and cut down on inflammation, I eat very little red meat and pork. Have also cut down on processed food and salt. Feeling better!”

-MS member

Do you have any goals for eating healthy in 2016? Share them with the community!

If you missed our other Food for Thought posts, check out the previous editions here.

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Meet Craig from the PatientsLikeMe Team of Advisors

Posted January 13th, 2016 by

We recently sat down with Craig, one of your 2015-2016 PatientsLikeMe Team of Advisors. Craig is living with fibromyalgia and severe degenerative disc disease, the result of a serious car accident in 1978.

Craig is active on PatientsLikeMe and other online communities, where he adds his voice to discussions about chronic pain, healthy living and LGBTQ issues. He’s also written essays to raise awareness about life with fibromyalgia, a “hidden disability” he feels is commonly misunderstood.

In this interview, Craig shares how important it is to have a community he can turn to for support and to remind him he’s not alone.

What gives you the greatest joy and puts a smile on your face?

It’s a mixture of both smiles and sadness when I think of my greatest joys. I tragically lost my mother in a traffic accident when I was 19 years old. We had started a conversation the week before where I was trying to “come out” to her (that I was gay). I procrastinated and when she asked if I was, I said I wasn’t sure, that I was working on that answer, and that I’d tell her more next week. Well that conversation never happened, but each time in my adult life that I see or hear about a gay person sharing an important life moment with their mom, like introducing a new partner, or a mom marching with their child in a gay pride parade, I’m overwhelmed with happiness, and sadness, wishing MY mom was there with me to share those moments.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Having a “hidden disability” is hard to live with. We worry about being judged because we outwardly seem “able-bodied”. But if a person could try to walk a mile, not even, walk a BLOCK in our shoes they’d understand what a hidden disability is. I wrote an essay about hidden disabilities entitled “Global Masked Hero Sightings Expected”. It discusses the phenomena that we all know too well — that people with disabilities are “INVISIBLE.” I liken it to having a “superpower,” albeit one that we don’t necessarily wish we had. Here’s a link to it on PLM.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm. Your huge, warm, bed calls out to you seductively, and all you want to do is limp over and slip clumsily between the sheets and let the comfort of painless sleep welcome you. When finally sleep overcomes the pain you welcome it as the only comfort you’ve had all day. All too soon you wake up to a new day, and sitting up in bed, you realize that your body still feels as bad or worse than it did the day before — that each time you wake up you NEVER feel rested, or refreshed, and that this will likely go on for the rest of your life.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Learn EVERYTHING you can about your condition! YOU should be the most knowledgeable person you know about what your condition involves. Research it. Google it. Read about Clinical Trials. Learn about the medications that might be used to treat your condition. Become a walking/rolling Wikipedia about your condition, then USE that information to make the best of living with that condition. When you know and understand almost everything about something, it holds NO power over you.

How important has it been to you to find other people with your condition who understand what you’re going through?

When I was first realizing through first hand experience, the symptoms of my illness, before my diagnosis of Fibromyalgia, I felt overwhelmed and alone in the world. I didn’t understand how a condition could affect SO MANY different parts of my body and life. I could understand the mechanics of my neck and spinal damage, but I didn’t understand how it could manifest in so many different and distant ways. When I joined PLM and found that there were thousands of others with my condition I felt such RELIEF that I was not alone. I felt validated and somehow comforted that others knew what I was going through without being judged as lazy, or malingering, or attention seeking.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I advocate for myself and for others on a daily basis. I’m active on PLM helping others understand more about their conditions. I write essays on many different social media, community, and news sites, helping the mundane world at large see the world through our eyes, and by seeing through our eyes, become better, more compassionate, more loving people.

Can you think of any positive changes that have happened in your life because of your condition(s)?

I believe there is a great balance in the universe for every person’s path in life. That for anything “taken away” by extreme loss or illness there is something “given” that re-balances your journey. There isn’t a year in my life that I would ask to do over again. I have learned SO MUCH from my walk through this world that has made me a better person. By seeing the world without the filters that life wants us to see through we are more able to see the world through the eyes of LOVE. It is BECAUSE of the adversity in my life that I grow closer to seeing the world with unconditional love. This ability to see the world without filters is the ability to see enlightenment. To transcend this earthly existence where we can become anything we desire or imagine.

 

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Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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Coming together for immunological and neurological health in May

Posted May 12th, 2015 by

If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common?

The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND.

While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition:

Fibromyalgia1

  • Affects 5 million Americans over the age of 18, and the majority are women
  • The cause of fibromyalgia is unknown
  • Common symptoms include insomnia, headaches, pain and tingling in the hands and feet

ME/CFS2

  • Affects between 836,000 to 2.5 million Americans
  • The large majority of people living with ME/CFS have not been diagnosed
  • There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia:
    • Profound fatigue that impairs carrying out normal daily activities
    • Unrefreshing sleep
    • Cognitive impairment
    • Symptoms that worsen when a person stands up
    • Symptoms that worsen after exerting any type (emotional, physical) effort

But sometimes, living with a CIND can be hard to describe. Check out this short video to get an idea of the invisible symptoms of ME/CFS.

Today, you can share your support for fibromyalgia and ME/CFS on social media through the #May12th, #Fibromyalgia and #MECFS hashtags. If you have a chance, you should incorporate the color blue into your activities, anything from changing the background on your Facebook to shining a blue light on your house at nighttime.

And if you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 59,000 people are sharing their experiences, along with more than 11,000 living with ME/CFS.

Share this post on Twitter and help spread the word for CINDs.


1 http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp

2 https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


Getting to know our Team of Advisors – Karla

Posted February 9th, 2015 by

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community.

About Karla (aka kam-turtle)
Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂

After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there to be better understanding that fibromyalgia is not a ‘one-size-fits-all’ condition.

Karla’s view of patient-centeredness
She believes patient-centered healthcare involves open communication between healthcare providers and the patient: “it should be an active and ongoing process to evolve the patient’s care toward results to create a more productive and comfortable lifestyle. It is a two-way communication stream based on mutual respect.”

Karla on being part of the Team of Advisors
Being a part of the PatientsLikeMe Team of Advisors is very humbling but also refreshing to my soul. At times when my illness is at its worst, I have always hoped my affliction could at least somehow benefit someone else, somewhere, even in the future. That is actually happening with the opportunity to be on the Team of Advisors. Like me, each team member is willing to share freely and openly in hopes of making the future better for others. It is so humbling to represent patients from so many walks of life and bring hope for a brighter tomorrow. The work PatientsLikeMe and the advisors have been doing can truly change the way health care functions.

Karla’s experience seeking care for fibro in a rural community
A decade ago, fibromyalgia was a foreign term in my rural community, even to me. Doctors dismissed me as stressed, depressed and overweight. Employers openly joked that people with chronic fatigue syndrome, bipolar and other hidden illnesses were lazy. One doctor said I had a ‘bucket condition’ or unknown problem. After two hospital stays, XRAYS, MRIs, CAT scans and three or four doctors later, I confided in a nurse practitioner who knew me. She knew me before I had spiraled down into a life of pain and she knew I was not faking. She suggested a condition called fibromyalgia and advised seeing a rheumatologist in a regional area. There I received the diagnosis of fibromyalgia. I was devastated and utterly embarrassed. I didn’t want to suffer the ridicule from the uninformed public. When I was too sick to work, I would call in but if I had a doctor appointment, I would generally take vacation time so no one at work would know I was traveling to the rheumatologist.

I desperately wanted to learn about fibromyalgia to see if there was a cure or at least proven ways to manage the pain and fatigue. Eventually I had to give up my career and focus on my health. My family became educated about the condition and they understood my situation. So, then I began to own my situation and share my story. Amazingly, as word got out, many neighbors in my area contacted me to share similar frustrations. Healthcare in rural areas is in short supply, doctors are overloaded, hospitals are money-making machines and patients are deliberately kept uninformed. I firmly believe if not for the concern and care of one nurse practitioner who knew me personally, I might still be switching from prescription to prescription with no answers.

Unfortunately, ten years later, fibromyalgia is still very misunderstood. Based on my experience, I have learned to share about my fibromyalgia life, to advocate for hidden and chronic illness, to educate people about fibromyalgia and to encourage those on a personal journey to keep fibro from taking over their lives!

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Getting to know our Team of Advisors – Emilie

Posted February 2nd, 2015 by

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia.

About Emilie (aka Memmie)
Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable.

Emilie on patient centeredness
Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best.

Emilie on being part of the Team of Advisors
It was really special to be chosen, I didn’t ever in a million years think I would be chosen. When I got to the interview part I thought there’s no way they’ll pick me. When I found out I was chosen I was really excited because I felt like I had been to enough doctors in my life that I had something to share. I hoped that we could help researchers study the things that would be relevant to us — the collective us — instead of just the things they wanted to know and they wanted to study.

Being part of the Team of Advisors makes me feel like I’m more in control, like an expert about my own body. When you go to the doctor, they think they know exactly what’s happening — they’re going to treat it they way they treat everyone else with fibromyalgia or Sjogren’s or arthritis. It’s great to be able to have input to help doctors understand that we need to be treated as individuals and not like a disease name. Just because I have migraines, does not mean my migraines are the same as someone who just walked out of the exam room with migraines.

Others members on the site have contacted me because I’m on the Team of Advisors, and they’ve seen my picture or seen my name and have said “I’ve seen what you’re all doing, and I went to your page and I see you have some of the same things I do and I found you and I thought you could be a good resource for me.” So sometimes I’ve been able to help out and that has been nice.

Emilie on tracking on PLM
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better. When I go to my doctor and they ask me how things have been, I can tell them that things have been up and down, and sometimes there have been more good days than bad days.

Share this post on Twitter and help spread the word for autoimmune diseases and fibromyalgia.


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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The Patient Voice- Fibromyalgia member Becca shares her story

Posted May 28th, 2014 by

 

What does sharing about health experiences and donating #dataforgood mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca

If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.


Making fibromyalgia visible this May

Posted May 7th, 2014 by

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May.

Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia – that can be localized to specific areas called tender points. Other symptoms include tingling, numbness, fatigue and sleep disturbances.1 In most cases, fibromyalgia is limited to women, but men and children can also be affected – it’s estimated that 3% to 6% of the world’s population has the condition, and about 1 in 50 Americans are living with fibro at any given time.2 3

So how can you help raise awareness for fibromyalgia in May?

The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the community, and now, it’s more than 42,000 strong! They’re donating their data through personalized health profiles and sharing their stories in the forum to help others with fibromyalgia.

The cause of fibromyalgia is not fully understood,1 and if you’ve been diagnosed, no one understands what it’s like better than you – connect with others living with fibro today and start sharing your experiences for Fibromyalgia Awareness Month.

PatientsLikeMe is the most empowering place I could ever imagine, giving us all not just information, but courage enough to be proactive rather than sit back and hope the doctor is doing the right thing…” – Fibro member Lizupatree

 

 

 Share this post on twitter and help spread the word for Fibromyalgia Awareness Month.


1 http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

2 http://fmaware.org/site/PageServera6cc.html?pagename=fibromyalgia_affected

3 http://www.myfibro.com/fibromyalgia-statistics