44 posts tagged “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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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Posted March 24th, 2017 by

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work.

What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here? 

A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people.

In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development.

How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient?

For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes and, in general, I was feeling a burning sensation in my esophagus on most days. It started to affect my concentration and my mood. On the plus side, I made some healthy improvements to my life – drinking a lot more water, exercising regularly and cutting down on one of my worst habits (eating late at night). But until I was prescribed Prilosec, it was definitely a frustrating challenge. At this point, the prescription has me feeling pretty much 100 percent, other than the fact that I’ve given up coffee for a strong breakfast tea every morning. I have a cup now and then but, all in all, coffee and my stomach do not get along.

I use PatientsLikeMe to track how I’m feeling and why – I try to leave comments along with my InstantMe. It helps me identify bad habits and external factors that exacerbate my condition. I also like to see how other patients with my condition are faring, what treatments are working, and, in general, it’s been eye opening to see how many other people have experienced the same things I have with GERD.

When was your mom diagnosed with fibromyalgia? Can you share how her diagnosis affected her and your family? 

My mother, Maria, was diagnosed with fibromyalgia, after several fits and starts, in 1997. For some time, we had no idea what was going on. Only after several second opinions, Fifth’s disease and Fibromyalgia were identified as potential culprits for her pain, inflammation, and total fatigue. It had a huge effect on our family as she was always the motor that kept us going. My father worked a lot but really wasn’t very active around the house with chores, cooking, homework and things like that. On top of that, my mother worked as his accountant full-time.

It shook us all for many reasons. I had never encountered a problem our healthcare system did not have some reasonable explanation for or plan to address, other than terminal illnesses. We’ve both taken strength from other people’s stories on PatientsLikeMe, like Team of Advisors member Craig’s inspiring post about fibromyalgia that led my mother to say, “That’s exactly what it feels like!”

How is your mom doing these days? 

My mother still struggles with fatigue and has given up some of her favorite things, like gardening, due to arthritis-like pain. She has to limit her driving time, which results in missing family events on occasion. Really, anytime we plan an event or trip together, it is generally constrained by managing her energy levels. We’re lucky to still be together as a family, but it is definitely something we have to always keep in mind with her. I would like to say that overall she’s doing fine and couldn’t be happier to spend time with my daughter – her granddaughter, Mariana – lately. She watches her two days a week, and I’m not sure it would be possible without PatientsLikeMe. I’m able to work from home on those days and give my mom a quick hand if she is in pain – just another reason we are so grateful to be part of the PatientsLikeMe family.

How does your and your mom’s experience shape your work here?

Typically, I am someone who takes great ideas from other PatientsLikeMe staffers and puts them into practice through software development. But I’d like to think my experience as a patient and son helps me view the website from that vantage point and make good suggestions, if I see anything we can improve.

And, of course, I couldn’t be happier to get up every morning and go to work somewhere that has a truly inspiring mission and has touched my family. It’s a real blessing!

What do you like to do for fun when you’re not at work? 

For the last six months, I’ve been focused on my stepson, Daniel, and his brand-new baby sister, Mariana. She never wants to stop – mostly demanding that I help her try to stand up and walk, walk, walk. Danny’s first language was Spanish, so we spend extra time reading and doing homework to catch up on some of his English skills while we reinforce his already great math skills. We also find plenty of time to play “Just Dance,” ride bicycles, go sledding and all the fun things. Personally, I really like to get outside and stay active – mountain biking, skiing, hiking. It’s a lifelong passion and it helps me stay in good health – something I know not to take for granted. In the evenings, I like to relax with a National Geographic or a good video game like “Tomb Raider.”

 

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