The FibroMapp app came about due to my wife, Alyssa being diagnosed with fibromyalgia, CFS/ME/SEID and also has severe neck pain due to mechanical issues and injuries.
I felt completely and utterly at a loss as to what I could do to help Alyssa. I watched my lovely, clever, happy, vivacious and fun wife spiral into a shell of her previous self. I saw the pain in her eyes, not to mention the sheer exhaustion. The brain fog was getting really bad and I was starting to get concerned that she had early onset Alzheimer’s. Seriously. The ability to wear clothing also became a thing of the past. She became so sensitive to anything touching her that all she could wear (and still does) was a light, loose nightie.
For 4 years I watched my wife turn into an extremely anxious, paranoid, woman who had become almost agoraphobic and in chronic pain. She was bed bound and very depressed. She was lost. I was lost. Her ability to work was out the window and ultimately, our business ended up having to close down. We were in a very tenuous financial situation…to the point that we almost lost our home because it. Things were bad. Very bad. And the stress for us both was exhausting on top of many other things. We had each other and our 2 fur babies. And that was pretty much it.
We both knew that something needed to be done to get her chronic pain management under control – and it became very evident that her doctors weren’t interested or listening to her.
She had been what we call, ‘tarred with the fibro brush’. Every issue that cropped up (from IBS to horrible bruising from walking or standing too long to just the sheer pain of her neck and other areas) was immediately dismissed as fibromyalgia and CFS/ME/SEID. And the amount of medications that she was on was extremely concerning.
At this stage (I found out much later) she was suicidal. Like reading her life insurance policy to see if she would have coverage. (She didn’t. Thankfully. As that was what stopped her in her tracks.). I know that Alyssa is going to do a blog about life insurance – that in itself was a shock to find out that she was not going to be covered at all by her existing life insurance …because of fibromyalgia. (This only made her feel even more worthless…).
Around this time smartphone/tablet apps were really starting to be ‘the thing’, so I suggested to Alyssa to look for an app to help her manage her fibromyalgia and for chronic pain self-management.
So she downloaded an app and within 3 minutes of opening it was absolutely livid. She had pinned her hopes on this app being the solution to help her understand her body better, get her medications under control and much more. This app did nothing of the sort. In fact, it was around 5 pages, couldn’t be personalised and was, well, useless. But alas, in the end it served a rather amazing purpose….
The FibroMapp App Was Born
As a web developer, I was interested in learning how to develop apps. So, we decided to create an app for her as a training tool for me, on top of course helping Alyssa.
We quickly realised that in order to create an app for the complexities that fibromyalgia and CFS/ME and the fact that everyone has their unique experience of these conditions – not to mention the fluctuations and flare-ups – that this app needed to be personalized to fit Alyssa’s ever-changing experiences.
At this point in time, Alyssa had connected with a few people on Facebook who also had fibromyalgia – and she was telling them about the app. They thought it was an amazing idea (and subsequently many of them became our beta testers down the road). And so…FibroMapp App was born!
An Opportunity To Make a Difference
One day I found out (by fluke or perhaps a divine intervention!) about a grant could be awarded to a social enterprise (not for profit – helping individuals, charities, communities and more grow).
We also realised that this app could be used if sold through charities and organisations for fibromyalgia, CFS/ME/SEID as a residual fundraising tool. So, ultimately a win/win situation – as users of our app would benefit as would the charity through the sale of the app.
2016 – Four Years Later
Thousands of people are using FibroMapp App, which has won the Healthline Best Apps Award 2014/2015. FibroMapp App is helping people with not just fibromyalgia and CFS/ME but people with complex chronic pain conditions such as Lupus, Multiple Sclerosis (MS), Lyme Disease and arthritis.
Patients are loving FibroMapp App because they are getting to understand more root issues, their bodies and their patterns, getting their medications and supplements under control (and deciphering what is and isn’t working).
All data entered is collated into easy to read reports that are ultimately giving patients a tool for self management. Healthcare professionals are also finding that the easy to read collated reports are excellent in helping them treat their patients best.
Lastly, Bodymap Apps has gone on to do some very exciting things! In 2015 the myLDN app was created for the LDN Research Trust as a research study. And this research study is the largest, global research study on 174 different auto immune conditions being treated with LDN (Low Dose Naltrexone). Bodymap Apps has raised a significant amount of money for charity, as they have benefited through fundraising by utilising our app as a tool to raise funds – as well as helping people, of course.
David Savage, owner & lead developer of Bodymap Apps