Life with Fibromyalgia, CFS/ME & Chronic Pain – Blog 1

In Blog by Alyssa Reid0 Comments

Welcome to our (my) very first blog! Here is the spot where I will be sharing experiences, information, research, helpful hints and tips to make life more comfortable and products that help make a difference when struggling with fibromyalgia, CFS/ME and chronic pain.

At first, I was going to keep these blogs ‘tight’. Here are 10 tips xyz etc. which I still will be doing now and again. However, I realised that it is important that right from the start for our readers to know that we are REAL people behind our award winning FibroMapp App and the social enterprise,  Bodymap Apps.

Bodymap Apps is a Social Enterprise – which means that it is ‘not for profit’.  My husband, Dave, is the Director of Bodymap Apps.  He is the one who developed our FibroMapp App as well as chief masseuse, grocery shopper, IT genius and The Big Bang Theory lover (as am I).

Dave/hubby does all the work in regards to programming, doing beta testing with patients, making sure people get any support they may need in regards to any questions they have with our apps. I am just the person with the ideas – Dave is the person who does the hard work.

You Can Never Judge A Book By It’s Cover…

…and in our case, apps by their developer! Bodymap Apps HQ isn’t made up of a bunch of IT peeps who build apps in a huge room filled with people on their computers, programming away with very little interest or understanding of the health conditions the apps are for…It is actually the very opposite!

In fact, my office is also my bed and combined with a variety of pillows, neck brace, wrist splints, ice packs, heating pads and a cat that demands attention and tends to drape himself over the keyboard, this is the communication side of things happen.) I also want to mention that I am a volunteer in all of this. I do what I can, when I can…!

Been there done that…

And I continue to be there in regards to the pain and other symptoms.

I/we know what it is like to go from doctor to consultant and trying every medication prescribed, without gaining much, if any success or help.


I know how frustrating and upsetting it is to be struggling so much, without ever getting the support I really needed from my GP (I then changed GP!). Believe me I have been there with the ‘It’s all in your head’ speech.  But I REFUSED to accept any of this as an answer – let alone help.

It’s my/our belief that by going through all of this – and now being on a new path, which is taking my health into my own hands, with as little involvement from my doctor as possible.

It is because of all of the above – and more, then makes Bodymap Apps what it is  – dedicated to helping people.

A Sense of Purpose Makes All the Difference

However, I feel that I now have a sense of purpose…I want to help people. We want to help people!  And, I believe that we are, in some small way making a difference for people, through using our apps, to be able to track. monitor and download reports is allowing people just like you and me gain an understanding about our bodies, our actions – and subsequent reactions.

We all have patterns with fibromyalgia, CFS/ME.  And to be able to understand what is causing us issues, is the start to getting the help we need – whether it is from our doctors or making lifestyle changes and using natural and alternative products to help us feel better.

In these blogs I will be sharing with you the ups and downs that I personally have gone through (and am going through), in the hopes that in one way or another, it will help you.

We have even created a little shop on the FibroMapp App website  of products that I have personally tried and tested and know (through my FibroMapp App reports!) they are making a difference in my quality of life.  Hopefully they may make a difference in your life, or someone else’s that you know.

All I can tell you is that…

Believe me…life was a lot different before having fibromyalgia, CFS/ME and severe mechanical neck issues.  Like so many others, we have gone through the stress, the strain, the financial instability (to the point of almost losing our home)…not to mention the huge reliance I have in regards to my hubby in regards to the help I need in day to day living.  I used to be an independent woman…and my goal is to get that back again…I am never going to give up in regards to making that dream my reality!

I realised that even though I struggle physically, I still have one thing that functions now and again (albeit foggy one…), my brain!

 

So! I still seem to get lightbulb moments…combined with hubby being an IT whiz means that we are striving towards continuing to help more and more people through mHealth.

One day, in severe frustration of trying to keep track of medications, flare-ups, pain, sleep issues – in journals that I was handwriting and were an incredible mess, I thought, ‘Wait a second! Maybe there is an app for my smartphone to help!’.  There was a fibromyalgia app indeed…but after realizing that the 3 page long app was absolutely useless – and the developer who created it had no concept of fibromyalgia, whatsoever…the lightbulb switched on.   What if my hubby could design a fibromyalgia app?  One that the user could personalize? Track pain, mood, meds, sleep, fatigue, other symptoms?  Create reports that could be emailed or downloaded and printed off?  Help the user and their doctor to understand what was really going on?

FibroMapp App Was Born

And that is how FibroMapp came into existence.  Launched in 2012, it is now a triple HealthLine Best Fibromyalgia Apps award winner.  FibroMapp continues to help thousands of people not just with fibromyalgia, but with any condition that is complex and painful.

 

Fibromapp is available on:

Available on kindle fire

Get it on Google Play

Download on the App Store

So there you have it!  The very first blog on my journey to share information, research, hints, tips and helpful products that I am investigating and finding interesting and helpful in using for fibromyalgia, CFS/ME and chronic pain.  I hope you join me on my journey by subscribing to receive blogs once a week (at least that is the goal).  Alyssa x

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