My experience with fibromyalgia so far — Scope | Disability forum
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My experience with fibromyalgia so far

Doomlord666
Doomlord666 Member Posts: 1 Listener

Hi, 

Thought I would post my experience with fibromyalgia so far. 

As a bit of context, I'm a male in my 40's with a full-time job in IT. 

Before the diagnosis: 

The Fibro crept up on me slowly and looking back I can see that it must have been with me for at least three years prior to me realizing.  By 2015 I was taking as many pain killers as I possibly could so that I could continue to work.  Apart from the constant pain, the Fibro fog was debilitating and there were days where I just pretended to work because I was mentally unable to do my job.  By mid 2015 I realized something was very wrong and I needed help.  It was at this point that had to quit working. 

I booked myself an appointment with my Doctor and I think he spotted it straight away but went through the process testing me to rule out everything else.  This was a very frustrating and emotional period which overall took about 2 years.  

  

The diagnosis  

Finally, the Diagnosis of Fibromyalgia was given and this is what I took away from it: 

The positives were that I had been tested for some very serious conditions and all the results had come back as negative.  What I have doesn't look life threatening.  

Fibro is the diagnosis of last resort for a set of grouped symptoms - It means medical science does not know what was wrong with me but acknowledges that I am chronically ill.  This was psychologically good for me to have a label but also from a society and work point of view essential. 

  

Acceptance 

 There was a period of time between getting the diagnosis and the actual acceptance of the illness.  For a while I really wanted to Doctor to keep investigating but once you have the diagnosis they won't and that is the double-edged sword of a fibro diagnosis.  In the end the Doctor essentially told me to stop coming back unless the symptoms got worse.  Taking on board all the tests that had been undertaken I also decided this was the best approach.  That sentence was easier to write than what happened in real life. 

I now understood that I was probably going to have to live with this condition for the rest of my life and I had to find a way of coping with it. 

  

My coping strategy 

Once I quit working, I was lucky enough to have the full support of my family and took the first few months just to rest.  I quickly realized the pain killers I had been taking didn't help and I stopped taking them.  I also realized the more physical activity I undertook the worse my Fibro was and the more I rested the less pain I was in.   

Being physically fit is important to me both as a way of staying healthy and just as a part of who I am so I decided this was going to be where I would try and attack the fibro and see if I could reclaim back some of my previous life. 

  

Know your boundaries 

Understanding that if I did too much physical activity fibro would get worse and potentially flare up, I set about trying to find where that boundry was.  I brought a pedometer and started increasing very slowly the amount of activity (walking) I did in a day and found out that I could manage around 2000 - 3000 steps a day max, after that my symptoms would start to get worse.   

  

Once I had that measurement, I then stuck to it like glue, this meant downing tools leaving things half done and saying no to lots of things.  To this day if I think I am doing too much I just stop.  

  

Doing more with less 

Now I had a starting point I started to plan how I could try and increase the amount of activity I could do and after reading some internet sites and books I decided the best approach would be to get stronger whilst losing weight as I was overweight: 

By losing weight my body physically had to carry less weight which meant I could do more activity, as long as I didn't lose my muscle when dieting.  By getting stronger, the weight which was left would be easier to carry meaning again I could do more activity. 

To gain strength I do weight training and started off using my own body weight progressing very very very slowly compared to when I was healthy and eventually moved up to equipment and weights.  I train once a week 5 exercises: Bench press, overhead press, bent over rowing, squat and deadlift, one set of 90 secs max using progressive overload.   

I also started to try and increase my daily steps, again very very slowly. 

Every 5-6 weeks I have to take a week off to fully recover.  If I ever feel like I'm over doing it then I stop.  I never attempt any sort of endurance-based activity such as running as it results in my body crashing into a massive fibro flare up. 

To lose weight I count the calories and eat a high protein vegetarian diet.  I use scales with a body fat % and a online TDE calculator to work out my calories and macros. 

My Goal is to stay within a healthy BMI range whilst also keeping my body fat % in a healthy range and being as physically strong as I can. 


Six years on. 

I still have fibro but my symptoms are generally not as bad as they were in 2015 and I rarely get full on fibro fog, it's more like a trippy headache.  The training and dieting have allowed me to improve my general health and extend what I can do in a day (up to 7500 steps).  The squats and dead's really helped with the restless legs at night and I sleep better.  However, doing the training is a balancing act and sometimes I do overdo it.  I also returned to work after having nine months off. 

My flareups are not as bad or for as long.  In general, the most painful times are right after my weight training, a combination of fibro and delayed onset muscle soreness which gets easier towards the end of the week.  Because I train on the same day every week the fibro feeling and recovery is now part of my weekly routine which physiologically makes me feel it's sort of under control. 

  

Thanks for reading :) 

Comments

  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @Doomlord666 and welcome to the community! Thank you so much for sharing your journey with us. It was very insightful and informative :) I hope you're having a good weekend! 
    Disability Gamechanger - 2019
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @Doomlord666 - & welcome to the community. Thank you for joining & sharing your story. It really is all about listening to your body isn't it? That & not giving in, but finding what works for you. I know if I don't exercise, it really doesn't help, not that I can do anything like you! Good for you for losing weight too; it's important to eat healthily, & not put your body under more strain with extra weight. It's really good to read you have improved, & were able to return to work. :)

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