Update on Living with Fibromyalgia

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Pickles taking care of me during a flare day. 

May 12th is Fibromyalgia Awareness Day.

I have been living with Fibromyalgia since 2014 when it was first diagnosed.

Over the years I have started to learn how to live with it and thought I would share some of the things that have happened over the years and the tips that have helped me. I am hoping that this might be able to help at least one other person out there.

Training with Fibromyalgia; this was the main part about this website and WHY I created it. It was to show that it is possible to train/workout and live through chronic pain.

Obviously I know everyone is different. I know everyday there is a different challenge. One day is good, others are bad. They go up and down but just by keeping somewhat of a routine is going to be beneficial.

It took me almost a year. But I built up skating 2x a week for 20 minutes both days.

Eventually 3x a week at 20 mins.

Then 3x a week at 30 mins.

…. now I am at 5x a week at 30-45 minutes. Some days (depending on my body) I allow myself to push to 1 hour. If I do, I make sure that the following day is off because I know it will flare).

I am not saying it is always good. Hell most of the time all the symptoms flare at the same time. Other days it is like never being diagnosed with anything.

Due to injuries (Non Fibro related) and still pushing through the injuries, I have not been back to the gym in over a year. Eventually I will make it there.

Chronic Fatigue has been another one challenge. However, cutting out caffeine (cold turkey), I have learnt how to deal with it!

Caffeine Intolerance was a problem that was overlapping with Chronic Fatigue. So, cutting that out overall helped.

There are some days that are worse then others. Somedays I have to take naps in cars in order to function slightly.

There are other days I miss half my morning or half to finish my day early because I can’t.

I deal with time management. Scheduling properly and having lot’s of breaks and overall it helps.

If you are exhausted, it is best to make sure you see a doctor to get a blood test before trying anything. This will ensure that there are no other underlying issues.

For me, I went through millions of blood tests and no doctor ever said anything. Everyone said it was fine. When I got all my results for my medical profile we learned that I have a B12 Deficiency.

I have not started taking vitamins yet. I see rheumatologist at the end of the month, and will ask him about it, in order to get what I need.

As well, I have taken supplements and it has gotten better but I have had an iron deficiency as well. I have been able to get off the pills and start eating more food with Iron and it seems to be helping. My last 3 tests have been cleared.

Cognitive Issues have also been a huge problem for me.

However, suffering from concussions some can argue it could be a mixture or latter vs earlier.

In any case it is something most Fibro-warriors go through in life.

For me it depends on the time of the month. When I get my period I tend to be a bit more forgetful. I think in relation to everything else, there is a hormone trigger there as well.

Examples I have gone through; Driving a few weeks ago. I could not remember how to use my flasher for a minute. I sat there playing with every part of my car and managed to get the temporary flasher (3 flashes and then it turns off) but nothing more. Then it clicked back and I was fine.

Other times, I forget and lose everything. Including my medicare card right before my appointment at the hospital.

A few days ago, I ended up taking the wrong turn on my way home and was about 30 minutes in the wrong direction before I realized I was at the wrong place and had to drive 30 minutes home.

There are certain things like that, that keep popping up.

Writing everything has helped.

As well taking 30 minutes every few hours to breathe and relax has helped.

Playing mind games too (not long just 20-30 minutes a day).

Sensitivity is A MAJOR issue. And one EVERYONE should be aware of. Chronic Pain Sufferers will understand. But for everyone else…. Do not touch someone with Chronic Pain unless they allow you to do it.

I have such sensitive skin that a light touch on the skin can cause severe burning pain.

For this reason I only work with one chiropractor and  one physiotherapist that I have had for years! They are miracle workers and have never caused my body to flare.

When you find yours. KEEP THEM! Because they are also rare.

You will see years working with them, you will create an unforgettable bond.

Other sensitivity issues I suffer from are; light and noise. Some lights trigger migraines. Some noise make me severely irritated.

There seems to be a link with Fibromyalgia and Post-Traumatic Stress Disorder.

I was diagnosed with Fibro in 2014. That was the same year as my first car accident.

I am not saying this is what caused Fibro, but I know this is one of the events that I think triggered the symptoms.

When I had my other car accident in 2018, I know the flare was bad for months. It hurt just to stand up.

Another thing that I have learned is Fibromyalgia is linked to arthritis.

Over the years I have been diagnosed with osteoarthritis (in my spine) and Ankylosing Spondylitis (a type of arthritis that causes longterm inflammation in my spine).

While everything is starting to come intact and I am learning how to deal with everything. I am just grateful for the challenges I face. They could be a lot worse, but they have taught me more than anything.

I have learned patience with my body.

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I have learned how to help myself and help others.

Key Tips to take away:

  • Drink water. Lots of it.
  • Avoid caffeine. Minimize.
  • Eat healthy.
  • Take breaks.
  • Rest
  • Say No.
  • Find your support group.
  • Find your dream team.

What have you achieved with a Chronic Illness? What would you like to achieve? What tips work for you?

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