23 posts tagged “symptoms”

Spoons and forks – not just for summer picnics

Posted July 17th, 2015 by

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available.

Here’s how it works:
Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening.

The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike in the woods. It may be hard to say ‘no,’ but easier to say, “I only have one spoon left today, and I’m saving it for cooking dinner tonight.”

Flipping it around, Jackie, who lives with multiple sclerosis (MS), came up with her “Fork Theory” as a way to communicate her pain points to family and friends. Jackie explained the theory to others in her PatientsLikeMe community:

“Forks are the opposite of spoons, you want to get rid of them. But knowing how many forks you have at any given time can help those around you understand what’s going on. For some of us, these forks take the form of chronic pain or fatigue, but for others, they may be simply a lack of motivation for the occasional family dinner (just kidding, Aunt Helen 🙂 ).”

Support that sustains
Whatever type of cutlery makes sense to you, a summer day may offer you more chances to eat well, enjoy some exercise a bit or spend time relaxing at the beach.

If you need someone to talk to about your health condition(s) and how you are using your spoons or forks today, there are more than 350,000 PatientsLikeMe members discussing more than 2,500 health conditions. Summer wherever, but summer together. Join PatientsLikeMe and discover a place to learn and connect.

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Visualizing insomnia

Posted July 2nd, 2015 by

Jenna Martin is a photographer living with insomnia, and her sleeplessness is the inspiration behind much of her work. Much like the Seeing [MS] campaign, she tries to visualize her experiences through unique photographs that capture what it feels like to manage bouts of insomnia.

Her photographs were recently featured in the Huffington Post, and as she told the organization, “on average, I only get a few hours of sleep every three days or so. During a bad bout, I’ll go close to five days with no sleep. When that happens, reality and the dream world become switched in a way: reality is very hazy and hard to remember, and any sleep I do get has dreams that are incredibly vivid. Everything starts to blend together; I’ll begin seeing things from a third person perspective and it’s hard to tell if I’m awake or if I’m dreaming.”

Check out some of her pictures below, and see more of her work on her Facebook page.

Jenna Martin Photography

Jenna Martin Photography

Jenna Martin Photography

If you are living with insomnia, you’re not alone – over 2,200 people on PatientsLikeMe know what you’re going through. You can also visit the Sleep Issues forum to ask questions and learn more about sleep (or lack thereof).

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Getting to know our 2014 Team of Advisors – Lisa

Posted October 27th, 2014 by

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. 

About Lisa (aka lcs)

Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She 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 somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.

 

Lisa on being part of the Team of Advisors

“When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were all surprised that our variety of health conditions gave us much more in common than we anticipated. Our passion and respective experiences made the discussion rich. And the PatientsLikeMe Team made us feel special and like we were part of the team. I think dinner the night of our arrival, before we’d had any formal introductions to each other, lasted over 3 hours and ended only because of fatigue!

Before I was introduced to the history and mission of PatientsLikeMe at a deeper level, I was an advocate and I knew I was benefitting from the community and tools. Learning more about the history of the brothers, the openness of the culture and the passion shared by the formal team has made me an evangelist.”

Lisa’s view on patient centeredness

“Patient centeredness is a new buzz-word in healthcare today. It’s somewhat oversimplified, but at its most basic it is putting the patient at the center of care. This means many things in healthcare: ensuring access to care, engagement of the patient at and between visits in their own care, integrated care across specialties. In research: collaboration among researchers to advance discoveries as the priority, with financial return secondary; finding a better balance between patient safety and speed to market of new discoveries, improving patient participation in clinical trials.”

Lisa’s contribution to researchers at the University of Maryland 

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. For one of the working sessions we invited Lisa to join us remotely, to discuss her journey with Parkinson’s disease (PD), and share her perspective and expertise as a patient. Here’s what she experienced:

“When I was still working, I learned that Parkinson’s affected my ‘public speaking’ ability. So, starting our discussion with a Q&A format helped me feel that it wasn’t presenting but rather just talking with colleagues. Also, speaking ‘as a patient’ meant I didn’t have to pretend…like if the right word didn’t come to me quickly, it was okay. The PatientsLikeMe team made it easy.

I had to work out my thoughts in advance and at first had considered sharing ‘data’ about PD. As I thought further though I realized that they live with data, they don’t live with PD. Instead I tried to share my experience through storytelling, hoping I could bring them into the life of a PWP on a daily basis.

Two things came as a surprise, both out of the questions I was asked by the UMD team. When we opened up the discussion to questions, there was some good discussion about the hurdles of participating in a clinical trial from the patient’s perspective. But then the researchers asked me questions I didn’t expect – not inappropriate, just surprising to me. One [of] the researchers wanted to know how my condition affected my family.

Another asked me, “what would my experience be like if I didn’t have PatientsLikeMe as a resource?” That one made me think. I hadn’t realized that I’d probably have no idea what I didn’t have. I would not know that other patients often have this onset of anxiety in public that they’d never had before. I would not know that there is a skin condition associated with PD. I would have a list of meds I kept and probably wouldn’t be able to go back and see start and stop dates because I wouldn’t have bothered saving that data…..

Patient participation in research is more than recruitment and trial results. I think a patient should participate in the study design process – before the Institutional Review Board approves. Be more creative in the design:

  • Ensure patients who meet the study criteria KNOW about the study – extend your reach to leverage support groups, forums and patients.
  • Ensure patients have ACCESS to the study – if your study requires multiple visits and has a handful of study sites, you’re limiting yourself to a finite number of potential participants.
  • Ensure patients learn about the study RESULTS – we need to know what we did mattered so we’re inspired to do it again, so we’re inspired to tell others.

For the PD community, a recent study found that only 1 in 10 patients with Parkinson’s disease have participated in a trial. PARTICIPATE! My experience is that YOU have to go find them. Sure, if you see a doctor in an academic setting, you’ll see flyers posted on the bulletin boards about trials (your provider may or may not mention to you). PatientsLikeMe has a clinical trials tab (did you know that?). PD has Fox Trial Finders and I suspect there are other condition specific registries. Or go to http://clinicaltrials.gov/ and search a database of private and public clinical trials. Together we can all help each other and ourselves!”

More about the 2014 Team of Advisors

They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Seeing [MS]: The invisible symptoms – hot and cold

Posted October 20th, 2014 by

Dimitri Cachia is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.”

 

You are now seeing hot and cold

Photographed by Jamie MacFayden
Inspired by Dimitri Cachia’s invisible symptoms

He worked with photographer Jamie MacFayden to portray his hot and cold sensations as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which we also posted about on the blog in July (blurred vision) and August (pain). It’s all about raising awareness and showing everyone the invisible symptoms some people are living with because of their MS. Stay tuned for more Seeing [MS] posts.

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Seeing [MS]: The invisible symptoms – pain

Posted August 22nd, 2014 by

“I’m burnt alive every day.”

That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video below:

 

You are now seeing pain

Photographed by Garth Oriander
Inspired by Stephen Papadopoulos’ invisible symptom

 

We’re highlighting pain this month in an effort to reveal the invisible side of living with MS. You can also read other posts on pain – of particular note, Tam’s story about her private, intense pain.

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Seeing [MS]: The invisible symptoms – blurred vision

Posted July 25th, 2014 by

Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS] and includes nine photographers depicting nine invisible symptoms in a series of single images. And all of them are inspired by the experiences of people living with the condition – these photographs are what life with MS is like for them. We’ll be highlighting them all on the blog over the coming months to help expose the invisible side of disease.

You are now seeing blurred vision

Photographed by Toby Burrows
Inspired by Emma Giunti’s invisible symptom

 


Emma Giunti talking more about MS and blurred vision.

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A Traumatic Brain Injury Can Happen to Anyone

Posted March 18th, 2013 by

Did you know that 1.7 million Americans sustain a traumatic brain injury each year?  Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function?

Brain Injury Awareness Month Banner

March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that traumatic brain injuries are a contributing factor in a third of all injury-related deaths in the US.  In addition, 3.1 million individuals are living with life-long disability as a result of a traumatic brain injury. Some common causes of these injuries are falls, car accidents, workplace accidents and assaults, but the effects can vary greatly from person to person.  No two brain injuries are alike.

Brain Injury Global Picnic Logo

Are you living with a traumatic brain injury?  Share your symptom and treatment histories with the 500+ members of PatientsLikeMe’s traumatic brain injury community and discuss your experiences in our Injuries and Traumas Forum.  In addition, consider raising awareness in your area by getting involved with the Brain Injury Global Picnic, which takes place September 21, 2013.  The goal is to organize 1,000 picnics around the world – thus setting the Guinness World Record for the most people picnicking in a 24-hour period – to promote awareness, education and change.


Life with Bipolar I Disorder: What We’ve Learned

Posted December 9th, 2011 by

Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder.  Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members.

First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ.  Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness.  It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well.  In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.

A Snapshot of the Bipolar I Community at PatientsLikeMe

Now, let’s take a look at the wealth of data found at PatientsLikeMe.  To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19.  What exactly are the symptoms of this condition?  Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia.  As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.

As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously.  Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel.  How well do these treatments work?  Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.

Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts.  We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:

  • “My manias last for about three to four months and are followed by depressions that tend to also last three to four months.  Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
  • “The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
  • “Now I’m a little manic.  I know what you mean about relentless depressions.  I have those too.  At the other end of the spectrum, I become psychotic.  That’s the part that really frightens me and usually lands me in the hospital, or worse.”
  • “A month ago, I truly would have been leveled by all this drama.  I’ve come quite a distance in a short period of time.  You guys give me such strength.  I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”

If you’ve got something to share about bipolar I as well, join the conversation today!


It’s the Season for Seasonal Affective Disorder

Posted November 15th, 2011 by

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

An Example of a Light Therapy Box Used to Treat SAD

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?

  • “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me – meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October – such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder
  • “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder
  • “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.


Get “Seizure Smart” for Epilepsy Awareness Month

Posted November 10th, 2011 by

Click Here to Take the Seven-Question Quiz and Get Your "Seizure Smart" Completion Certificate

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.


American Diabetes Month Kicks Off with “T1 Day”

Posted November 1st, 2011 by

As we mentioned in our blog about the “Calling All Types” campaign last week, November is American Diabetes Month.  Today, November 1st, is also “T1 Day,” a new event sponsored by the Juvenile Diabetes Research Foundation (JDRF) to raise awareness about type 1 diabetes (previously known as juvenile diabetes), which is often diagnosed in children, teenagers and young adults but may occur at any age.

November 1st is "T1 Day," An Event Designed to Raise Awareness of Type 1 Diabetes

Affecting 5% of those with diabetes, type 1 diabetes occurs when the pancreas does not produce any insulin, a hormone that is needed to convert sugar, starches and other food into energy for the body.  As a result, people with type 1 diabetes are “insulin dependent,” meaning they must take insulin in order to stay alive.  This requires testing their blood sugar and taking insulin (via injection or an insulin pump) multiple times per day for the rest of their lives.

In contrast, type 2 diabetes patients do produce insulin.  The problem is that it’s either in insufficient amounts, or the body doesn’t respond to it as it should.  Thus, oral medications, supplemental insulin and/or lifestyle modifications such as diet and exercise may be prescribed to help control blood sugar levels and prevent hyperglycemia (high blood sugar), which is a major cause of serious diabetes complications such as blindness, kidney failure and amputations.

Learn More About How You Can Get Involved with American Diabetes Month

Here at PatientsLikeMe, there are currently 386 patients reporting type 1 diabetes, with 63% female and 37% male.  Some of the most commonly reported symptoms include blurry vision, urinary frequency and excessive thirst, while some of the most commonly reported treatments are Insulin Glargine, Insulin Lispro and Insulin Aspart.  Collectively, our members have submitted 45 evaluations of these three insulin types, sharing their experiences with dosage, side effects, cost, adherence and more.

Confusion about the differences between type 1 and type 2 diabetes – the latter being far more prevalent as well as strongly linked with the obesity epidemic – is a frustration for some of our type 1 members.  As one member writes in our forum:

“As a type 1 diabetic, I am sick of people giving me advice or ‘cures’ that are for type 2.  Almost all advertising in Canada is directed towards type 2 diabetics and how the disease is on the increase due to poor eating habits and obesity, weight problems, whatever.  So when people hear I am a diabetic, I get: ‘Should you really be eating that dear, diabetics should not eat sugar.’  I look at them and think of the blood test I just did, which let me know that I needed some sugar.”

Indeed, as the JDRF states on its Myths and Misconceptions page, “While obesity has been identified as one of the ‘triggers’ for type 2 diabetes, it has no relation to the cause of type 1 diabetes.  Scientists do not yet know exactly what causes type 1 diabetes, but they believe that both genetic and environmental factors are involved.  Eating too much sugar is not a factor.”  Also, as the patient quote above illustrates, patients with type 1 diabetes must always be on alert for insulin-induced hypoglycemia (low blood sugar), which requires an immediate intake of sugar to avoid fainting and other complications.

For a deeper glimpse into life with type 1 diabetes – which is diagnosed in more than 15,000 children and 15,000 adults each year in the US – tune in to our podcast interview with Sarah Taylor, a registered nurse and friend of the company who was diagnosed with type 1 diabetes at the age of nine.

To learn about other American Diabetes Month events, check out this great preview on the blog Diabetes Mine.  And if you’re a diabetes patient, don’t forget to share your thoughts and stories at CallingAllTypes.com.


How Much Do You Know About Autism and IBS?

Posted April 22nd, 2011 by

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

  • PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

What are the major symptoms?

IBS

IBS

Membership

  • PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

  • IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
  • The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
  • The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

PatientsLikeMe member afleishman


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.


Sharing and Learning with PatientsLikeMe

Posted December 22nd, 2010 by

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions.

We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.

To review all of our newsletters, you can visit our archives page here.

* * *

2166 (Amy)

How has PatientsLikeMe helped you learn and share this year?

tommymkr (Tommy Maker – ALS Community)

PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own.  I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.

cobe (cobebu8 – MS Community)

I really like it here in that I can keep track of all my meds with their side effects, etc.  Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.


mtnlady (mountain lady – Parkinson’s Disease Community)

It has given me the experience of reading about others who are in situations similar to mine.  It has shown me that I am not alone.  I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.

Also, I became acquainted with someone online through PatientsLikeMe.  We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time.  Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.

ellie
(ellieGADsufferer – Mood Conditions Community)

It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary.  (My general practitioner and Consultant just brush the list aside and shrug their shoulders).

I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.”  I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.

Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.

andrew (andrewn78 – HIV Community)

I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.

(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.

kg
(kg10043 – Epilepsy Community)

I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).

kidneygirl (kidneygirl1198and0505 – Transplants Community)

PatientsLikeMe has helped me so incredibly much!  I’ve made so many friends that I thank God for every day.  It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.

I just really hope that people can say that about me.  It took me awhile, but no one is alone out there.  Everyone is going through their own personal struggles.  I just want everyone to know I am all ears!

PatientsLikeMe member lscanlon