10 posts tagged “exercise”

Member Chris finds the uplifting side of type 1 diabetes

Posted February 23rd, 2017 by

“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use.

Chris was diagnosed with diabetes at age 20, when he was in college studying law. His diagnosis inspired him to shift his focus to health and wellness (personally and professionally), and he earned a degree in Exercise Science and Health Promotion from Florida Atlantic University. He runs an online nutrition and fitness coaching business and he published an e-book called The Art of Losing Body Fat. He holds four state records in powerlifting (with one hand)! He is also a motivational speaker who has given talks at schools, businesses and organizations like the American Diabetes Association across the U.S.

We recently caught up with Chris about his interests, overcoming adversity and the upshot of his diabetes diagnosis.

What are your three favorite things to do? What do you love about them?

I love powerlifting, speaking and helping people get in shape! Powerlifting allows me to compete against myself and push my limits. Learning to lift properly as an amputee and learning to stabilize my blood sugar while lifting with diabetes was tough. But I love the challenge and satisfaction of working towards a goal and achieving it – no matter how long it takes. Speaking is my passion because I get to share stories that help people overcome hardships in their lives. Speaking allows me to be honest and real with the audience. There is nothing better than people writing me months after a talk or seminar about how they are still motivated and fueled by my talk. Helping people get in shape online is my business, but it is also my passion. I know what it is like not to be confident in your body, and I get the chance to help people with that mental and physical struggle daily.

How did growing up “being different,” as you say in your profile, shape your life? Has it helped you adjust to life with diabetes?

I was bullied and picked on for being different. I tried to stay strong as much as possible but it was hard and depression did get to me. It took a while to figure out that other kids or teens who would make fun of me for something I can’t control probably have a lot of personal issues they are dealing with. I focused on doing the best I could with what I had, and that philosophy carried over into my diabetes management. I was mentally prepared to handle the burden of diabetes because I knew it took the right mindset to thrive.

Could you share your diabetes diagnosis story with us? Why do you consider your diagnosis “the best thing to ever happen” to you? 

I was actually working in the ER at the time I was diagnosed. Weeks prior, I had been going to the bathroom 20+ times a day and I was so thirsty and irritable. My mom worked for a urologist in the same building so we did a urine test just in case, and I was admitted to the hospital with a blood sugar of 510. If it weren’t for diabetes, I would’ve never switched my major from law to exercise science, I wouldn’t be working with other type 1’s in the community, and I wouldn’t have found my true calling in life.

It seems like defying limits is a big theme in your life. What are some limitations that you’ve shattered? What motivates or inspires you to live this way?

Limits are problems and all problems have solutions. I have broken a few state records in powerlifting, deadlifting over 600lbs when the original limit was thought to be: “I can’t deadlift because I’m missing a hand.” Playing drums by sticking a drumstick through a glove finger hole was another limit. I also shoot guns, go fishing and occasionally rock climb. Some might see that as overcoming limits; in my case I just call it living.

What advice do you have for someone dealing with multiple health issues or going through a rough patch with their health?

Keep going. Think logically on what you can do on your part. Do the best you can with what you have where you are right now. By focusing on what you can control and not what you can’t control, life becomes a little more clear.

As a new member, what’s your experience on PatientsLikeMe been like so far, and what are you most interested in learning more about going forward?

I love the community and I’m really interested in just learning about other peoples’ perspectives and how they manage daily. I love to see people succeeding, regardless of how big the success or how hard the obstacle.

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The Magic Pill: A new 21-day podcast challenge

Posted August 12th, 2016 by

Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off on September 1.

Co-hosted by Eddie Phillips, the director of the Institute of Lifestyle Medicine at Harvard Medical School, the podcast is all about shifting our mindsets when comes to exercise and getting active. It’s not about telling you what you should or shouldn’t do — instead, the goal is to inspire listeners to get excited about moving more and to do what you can.

Each day, you can tune in to hear about the science behind exercising, helpful tips, and stories from both athletes and people who’ve never run a mile. Check out the pilot episode for a preview!

Before the challenge starts, head over to the forum and tell us how you feel about getting active: Do you love it? Dread it? And if you do it, what motivates you and how do you work it into your lifestyle?

 

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Strengthen Your Knowledge During National Osteoporosis Month

Posted May 18th, 2012 by

Of the estimated 10 million Americans with osteoporosis – which means “porous bones” – 80% of them are women.  That’s why we wanted to shine a spotlight on this condition during National Women’s Health Week.  Approximately one in two women over the age of 50 will break a bone because of osteoporosis.  Even more alarming is the fact that 24% of hip fracture patients age 50 and older die in the year following their fracture.

Talk to Your Family About Bone Health During National Osteoporosis Month

Now that you know the facts, it’s time to talk to your family about what you can do to prevent this scenario.  The National Osteoporosis Foundation’s Generations of Strength Campaign encourages women (and men!) to start conversations about bone health and family history during National Osteoporosis Month.  Have either of your parents experienced a broken hip, spine or wrist, for example?  What about height loss or a spine that curves forward (two possible signs of broken bones in the spine)?  Research shows that genetics plays a major role in osteoporosis.  If either of your parents has a history of osteoporosis or broken bones, you are more likely to break a bone.

Do You Have a Parent Who's Experienced Broken Bones, Height Loss or a Forward-Curving Spine?  You May Be at Risk for Osteoporosis.

Fortunately, there are preventive steps you can take.  Thirty years ago, osteoporosis was generally considered a part of normal aging.  But today researchers know a lot more about how to protect your bones throughout your life.  For example, getting enough calcium, vitamin D (which aids calcium absorption) and exercise is very important.  Eating fruits and vegetables is also beneficial to bones.  On the other hand, eating poorly, smoking, drinking too much alcohol and not exercising can cause bone loss.

In addition, researchers now have a way to detect osteoporosis before a broken bone occurs.  It’s called a bone density test, and it measures your bone density in the hip and spine.  That’s because fractures in these areas can cause more serious problems, including longer recovery time, greater pain and even disability.  Using a Central Dual Energy X-ray Absorptiometry (DXA) machine, the test usually takes 15 minutes or less.  It is non-invasive and painless.  While it does expose you to radiation, you are exposed to 10-15 times more radiation flying roundtrip between New York and San Francisco.

A Snapshot of the Osteoporosis Community at PatientsLikeMe

If you’re a postmenopausal woman – or a menopausal woman with a family history of osteoporosis or other risk factors – talk to your doctor about whether you should have a bone density test.  Men over the age of 50 should do so as well.  Based on your resulting T-score (the measurement of bone density), your doctor can determine how healthy your bones are and whether you are a candidate for osteoporosis treatments, which can help to improve bone density and even reverse the condition to some degree.  According to the 911 patients with osteoporosis at PatientsLikeMe, some of the most commonly used treatments include Fosamax, Actonel and Boniva.  (Click each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.)

As we wrote at the beginning of the week, women often put their needs secondary to that of their family.  This is an example of how it’s crucial to prioritize your own health.  Because if you break your hip, how well will you be able to care for your family then?


Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”

Posted December 13th, 2011 by

PatientsLikeMe Member and Parkinson's Blogger Steve Ploussard Doing His Best "Heisman Trophy" Pose

Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment.  Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.”  Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.

1.  What’s it been like “going public” about Parkinson’s on your blog?

Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me.  When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders.  I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease.  I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.

I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years.  It wears on you and can consume you if you let it.  Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family.  The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it.  I use the opportunity to educate that PD does not kill you.  It only makes it more difficult to live a normal life due to the symptoms.

2.  What role does PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS) play in your disease management?

The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD.  I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint.  When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7.  Just before I started to answer this question today, I took the test and scored an 11.  My high was a 22 back in May 2011.

A Sample Section of PatientsLikeMe's Parkinson's Disease Rating Scale (PDRS)

Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come.  The PDRS may not be an exact science, but it does give us a baseline in measuring PD.  Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s).  Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe.  If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.

3.  What’s some of the best advice you’ve gotten from other PatientsLikeMe members?

The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal.  The wealth of knowledge you have at your fingertips is extremely powerful.  If you have PD and are not member, you are simply missing out.  Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.

The following is one example of an experience I had recently with PatientsLikeMe.  At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website.  The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:

Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors.  And now for the 3rd time I am stopping due to the side effects.  For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”

Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance.  J. Marley, Lexiegirl, Parkinson’s Pete and equus, thank you from the bottom of my heart.  I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.

4.  You talk a lot about your fighting spirit on your blog.  Where do you draw inspiration and strength?

Good question.  My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day.  I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work.  I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.

Outside my family, there are three men that I draw inspiration and strength from almost daily.  They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali.  This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer.  I have heard and played the speech so many times I can almost recite it by heart.  The main strength I draw on is what Coach Valvano asked us all to try and do each day.  We need to be deep in thought about something important to us every day.  Each day we need to laugh and enjoy life.  And lastly, each day we need to have emotions that move us to tears.  If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY.  The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).

As we go through life, we all have our heroes we look up to for inspiration.  For me that has changed as I have gotten older and hopefully wiser.  When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus.  In my adult life family members have become my heroes and support as I fight PD and try and live a normal life.  My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.

Boxing Legend Muhammed Ali, Whose Attitude Inspires Steve Ploussard on a Daily Basis

Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years.  Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.”  His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail.  And then there is The Greatest, Mohammed Ali.  My blog’s mantra, “Attitude & Fitness Wins,” says it all.  I draw strength and a confident attitude every time I see it.  His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.

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To find out more about PD, check out our follow-up blog post, “Life with Parkinson’s Disease: What We’ve Learned.”


A Peek at the September Newsletter for Members

Posted September 30th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

A Patient's Walking Treatment Evaluation History

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

Need help with something on the site?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site, Here are our top functionality enhancements for September.

EMAIL AND NOTIFICATION UPGRADES
There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

Your New Email Settings Page

HIDDEN FORUM TOPICS
Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

Hide Topics by Clicking This Button

AUTOMATIC LOGIN VIA VERIFIED EMAIL
If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

Click Yes and You'll Never Have to Log In to Click Links in a PatientsLikeMe Email Again

NEW OUTCOME SCORE FOR AUTISM
Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

Autism Patient Nugget with ATEC Score


How’s Your HDL and LDL?

Posted September 28th, 2011 by

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years?

Cholesterol Levels Can Be Tested by Having Blood Work Done at Your Doctor's Office

More than 102 million Americans have a total cholesterol level at or above 200 mg/dL, which is beyond healthy levels, and more than 35 million of those individuals have levels of 240 mg/dL or higher, which puts them at high risk of heart disease. That’s a major concern given that heart disease is the leading cause of death in the United States.

Fortunately, high cholesterol can be lowered with lifestyle changes – including losing weight, eating healthier, exercising and quitting smoking – as well as medication. But to start turning things around, you have to know there’s a problem. Even children and adolescents can have high cholesterol, especially if they are overweight.

Here at PatientsLikeMe, 335 patients report hypercholesterolemia (high cholesterol) while 235 patients report hyperlipidemia (high lipids in the blood, including cholesterol and triglycerides.) Across both conditions, some of the top reported medications include Simvastatin, Atorvastatin, Pravastatin and Rosovastatin.

If you’re unsure of your cholesterol levels, talk to your doctor at your next visit. And if you’re already aware that your levels are high, reach out to other patients like you today at PatientsLikeMe. Changing your lifestyle isn’t easy, but it’s easier when you have a community to lean on for support, answers and advice.


What Patients Are Saying About Yoga

Posted September 15th, 2011 by

National Yoga Awareness Month

Never done a downward dog? Now is your chance.

September is National Yoga Awareness Month, a grassroots campaign to inspire a healthy lifestyle. As part of this national observance, those who have never experienced yoga can try it for free for a week at more than 1,600+ participating studios. Also, beginners and veterans alike are invited to come together for “The Time for Yoga,” a worldwide yoga session held on the last day of the month – Friday, September 30th – at 7:00 p.m. local time.

Here at PatientsLikeMe, more than 530 patients report practicing yoga for reasons such as general health, spasticity/stiffness, fibromyalgia and improved flexibility. The most common “dosage” is 30 minutes daily.

Yoga can be practiced by all ages

What do these patients have to say about yoga? Here is a sampling of the reviews and tips found on the more than 120 treatment evaluations submitted about yoga.

  • “Yoga is so good for so many reasons! It helps me stretch my stiff body, strengthen core muscles, and gives me calm and purpose for the day. I always tell myself I should do some yoga every day! Unfortunately, I find having a class and good teacher is really the motivation I need to stick with it.” – Patient with MS
  • “Yoga comes with many other benefits, such as learning to get in touch with your body, listen to your body, and treat your body with the compassion that it deserves. In the process, you also learn to treat your whole self with compassion. Since being chronically ill involves a lot of surrender to discomforts that are way out of our control, it is good to have a way to remind yourself that you are sacred and that you are not your pain and fatigue, but something bigger.”Patient with fibromyalgia
  • “Give it a try for three months, most everyone I know comes and sticks with it. I was one of the only males in the class to begin with but now about eight guys rotate in and out. Love yoga. The teacher said the para sympathetic something is activated with yoga, and Tai Chi does it as well; other exercise does not. Give it a try, it helps me.” – Patient with Parkinson’s disease
  • “It was a huge step for me to start taking yoga as I have found it increasingly difficult to be around people, but I went for myself and found that it really helped me to just delve into my own space. Hatha yoga is very pleasant because it is enough of an exercise that you notice the health benefits, but it is not so strenuous as to create long lasting physical discomfort. The unexpected benefit is the increase in self control that I am finding, and I haven’t had any lingering thoughts of suicide since starting it.” – Patient with major depressive disorder

If you’re considering yoga, learn more about what it entails – and what potential benefits it has – on Yoga Month’s “New to Yoga” page.


PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers

Posted April 13th, 2011 by

screen-shot-2011-04-13-at-123447-pmPatients Unveil Top Reasons Not to Share Health Information

CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.

“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”

In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).

Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).

The complete PatientsLikeMe® Poll results can be downloaded here.

NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.

Poll Methodology
Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon PatientsLikeMe member dwilliams


One for All: A Cross View of Patient Sharing

Posted February 4th, 2011 by

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

commgraphicToday, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

  • Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
  • Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

What are your major symptoms?

What are you talking about?

  • Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.


Voices of Fibromyalgia: Q&A with Minnie Lee

Posted December 9th, 2008 by

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site.

***

picture-3.png (David) When were you diagnosed with fibromyalgia and when were your first symptoms?
picture-4.png (Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000.
picture-3.png (David) How has fibromyalgia changed your life?
picture-4.png (Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage a fairly active and busy lifestyle– from having a full-time job to training for triathlons– I did have to make certain adjustments in my life to make sure I can work within my limitations.  First of all, I had to make the huge adjustment mentally to be ok with admitting that there are just certain things I can’t do.  For a type A person like me, it was one of the most difficult things I had to change (and it took a while).  I limit the number of errands I run in a day, even if I have a much longer list of things to do.  I spread them out over several days – which requires planning some things ahead.  To ensure I get good sleep (in both quality and quantity) to accommodate my training regimen, I make choices every day that make sleep and rest a priority.  If this means limiting my social engagements and having to cancel certain commitments, so be it.  I also had to make a mental shift at work to not get as affected by stressful situations, which has helped me greatly.
picture-3.png (David) What motivates you to train for triathlons and half-marathons?
picture-4.png (Minnie) There are three major factors that motivate me. First and foremost, this was my promise with God – to turn this negative situation around into a positive one.  I made a promise to swim, bike and run to not only help myself but to help others find hope in their every day lives.  Secondly, it is my fellow patients that motivate me to get up and moving.  I know there are people out there whose conditions have gotten so bad that they cannot engage in any kind of exercise.  I can’t imagine the pain and suffering they go through, and I want to dedicate my races to them, while giving hope to others that anything is possible.  I know that these endurance races are a rather extreme measure to promote the benefits of exercise, but I think by doing something extreme I can make a better point about what we’re capable of.  (If I can do a triathlon/half-marathon, you can definitely go for a walk and see how you feel!)  Lastly, my motivation is my own past.  Four to five years ago I was drowning in self-pity, dependent on muscle relaxants and pain killers, spending a lot of my leisure time in bed, and was frequently missing work enough to make me feel concerned about keeping my job.  They were some of the darkest days of my life.  Now, all I have to do is remember those days to get myself moving on a tough day.
picture-3.png (David) How do you see PatientsLikeMe helping the fibromyalgia community?
picture-4.png (Minnie) Launching a community site for fibromyalgia on PatientsLikeMe has significant meaning.  First of all, it adds to the recent recognition the illness has been gaining in the medical community.  It is time for any discussion of this illness being real or not to be over and done with.  Secondly, and more importantly, it has massive potential of being a crucial resource for patients that lack information and options about their conditions, by having every possible symptom and treatments laid out in one central source.  Additionally, patients can and will find friends that understand what they go through (and we don’t have many of those, because fibromyalgia is still a foreign language to many people).  Another amazing possibility is that this can be a great source for doctors, because knowledge and understanding of fibromyalgia among doctors can always be improved.  This can be the perfect linkage between patients, their support system and health care professionals.  I can’t help but be so enthused and excited about this endeavor PatientsLikeMe has set forth.  They are bringing such a helpful platform of information and communication to the fibromyalgia community.  Thanks!!!!