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How Fibromyalgia took down a high achiever.

Jan 05, 2015 9:40 PM

I was diagnosed with Mild Fibromyalgia in 2008, and symptoms were controlled with exercise and relaxation. This worked well and allowed me to live my normal fast paced life.
I am a RN/Paramedic and had been working as a mine resuce officer in a large iron ore mine in the far north of Western Australia.
I was also able to complete 2 tours as a health provider in Haiti back in 2010-2012.
That all changed in September 2012 when I contracted Glangular fever. It changed my once quiet fibro symptoms into a monstrous swarm of stinging, burning, pounding pain machine, and don't even get me started on the fatigue.
My schedules of light exercise and relaxation no longer worked and I found that I couldn't due any level or form of exercise due to pain and fatigue.
Almost instantly my world fell apart. I had been medically discharged from my job, which meant that I also lost my greatest friend base as most of my friends were from work.
Fortunately for me I had married a wonderful, understanding and loving man who dropped everything, took leave and concentrated me and helping me through.
I gained 20 kg in the space of 3 months due to medication, and before I knew it I was sinking deeper and deeper into depression. All I wanted to know was where had my life gone and how do I get it back.
I have finally come to terms with the fact that fibro will be with me for the rest of my lofe so I have to stop looking behind me to recapture my old life, and look forward to creating a new life where I stop to smell the roses and listen to the birds.
Fibro has definitely stopped me in my tracts, but by doing so, it has made me see everything in my life that I WAS missing. Now I spend my time experiencing and appreciating everything.
I may have Fibromyalgia, but it doesn't have me!

Jan 06, 2015 3:52 AM

I feel your pain. I had just gained my nursing diploma when a car accident caused me to have a minor VAD and strokes plus hearing loss & Tinnitus.
I lost my job and my life as i know it. Life can be so so cruel. Sometimes i wish i had died in that accident xx

Jan 06, 2015 7:44 AM

Kriket, I can completely relate because I worked until 2010. I had complained of IBS symptoms that seemed abnormal to me but couldn't get a doctor to take me seriously until I started bleeding, beginning in 2008. During the next 2 years my health began to get worse but I had no idea why. Turns out I had a paraovarian cyst growing the whole time (10-11cm when removed), depleting my immune system and causing a domino effect on my health & life, from the adhesions scars and surgical hematoma & Ileus. I went on to develop pelvic floor congestion and dysfunction, and fibromyalgia. I already had DDD & osteoarthritis, & neuropathy in both feet. I now have osteopenia that's deteriorated my TM joints and jaw (can't replace 2 missing teeth bc bone graph nor posts will hold).

In November they diagnosed dementia and motor skill deficits bc whole right side is weak, so I need to walk with a cane for stability. I'm not sure but I think the pelvic veins may have got worse bc I'm feeling the same pelvic floor & thigh pressure as before they closed some off. I now have to be evaluated for multiple changes on brain MRI and motor deficits, as if I didn't have enough to deal with already.

Because I was never able to return to work many people would say I needed disability, including my husband. It took me 4 years to accept I am disabled and come to grips with how my life is now, compared to what I had before I got sick. And like you I refuse to just give up and exist until I die. I want to stay positive and look at the blessings I do have, enjoy the good things I can, and accept my limitations with humility.

I don't know about you, but my faith, that God will get me through this, is what keeps me from giving in to the dark abyss of depression. I remind myself daily, that children are born with handicaps and grow up to live beyond them in amazing ways. And that no matter how bad my mind tells me I have it, my heart reminds me there are many others out in the world (many on here) that are much worse off than I am. Of course it helps too that my mother-in-law, who recently suffered a mild stroke and lost her remaining sight (glaucoma) bc of it, has become one of the most bitter, resentful & selfish person I've ever met. I do not want to be like her. I love how you out it... I too want to stop and smell the roses.

I hope it helps you knowing this community is a wonderful place to vent, cry, or laugh together. You are not alone in this. And I will add you to my prayer list, along with the others I've met on here. Good luck with your walk through the fibromyalgia & any other issues, and God bless!

Jan 06, 2015 12:10 PM

Hi All,
I read the first post ( sorry fibro fog can't remember your name) and all the replies with such interest and understanding, as it is so how I have felt!
I felt, that I was diagnosed with fibro and it was like the flood gates or defences in my body suddenly opened and my deterioration was so rapid, it was scary and gave no time to 'adjust' to this new way of life and it's limitations!
I was diagnosed about 3+ years ago. I seem to go from a healthy, although in pain and tired human, to someone that could hardly walk, no energy, got every germ going for it, complete exhaustion, could hardly work at housework or employed work. I had just become a granny, and could not do all the things I dreamt I would do with my grandchildren.
I think it has taken me this long to accept that I have to do things slowly, prioritise things because of low energy, there are things I do differently than I used to to try to reach the same end and there are things I cannot do anymore. I think I went through a sort of mourning of my lost life. But then I kicked my self up the behind and am now getting on with a useful but very different life. I am also blessed with a fantastically understanding and supportive family.
Good Luck to all of you, it really does take time, acceptance and the realisation, you can still have a good life, but by golly it is different than the one that had been planned, but it could also be so so much worse.
Gentle hugs to you all x

Jan 06, 2015 5:18 PM

I am right there with ya'all.

Jan 06, 2015 10:58 PM

O my goodness. I am overwhelmed. Thank you all so much for your encouragement and wisdom. Unfortunately part of this syndrome (pain), causes you to believe that you are the only one in the universe suffering like this. Thank you Jesus that he has brought you people into my life.
I actually wasn't going to do a post because I didn't want to start a pitty party. I don't go for that stuff. But I was so wrong.
You have lifted my spirits so much. Thank you.
K.

Jan 06, 2015 11:45 PM

I feel your pain. I'm sorry this happened to you. I am only 20 and it restricts me so much. I want to exercise, but fatigue won't allow me to do more than just attend school. I'm exhausted all the time and the pain is inevitable and always present. I feel like my life is over and it's just starting. No one believes me, even my mom who has RA thinks I'm exaggerating..

Jan 07, 2015 1:43 AM

It makes me sad to hear your story MilaC. As you can see by the rest of the post not just on this page but throught the community, your not alone and definately not exaggerating. Please find comfort in that knowledge, I have.
The main thing I've learnt throughout my journey with chronic pain and fatigue is need to take one moment at a time. One minute, one hour, one day, one event and one responsibility.
I have learnt to prioritise and the most important thing I've learnt is to say NO. No use to be a very hard thing for me to say. I have to be honest and say that I'm still battling it.
Hang in there people.
K. 💋

Jan 07, 2015 7:42 AM

Milac, kriket is right on advising you... One day, one moment, one step at a time. That's my way too. Read through older posts, and you'll also hear each other advising be open & honest, and don't feel guilty if you have to say no for your own health. When mine first started my family & friends doubted too. 3 years into my battle I asked my husband to go with me to several specialist appts. That's how he became my biggest advocate and supporter. Now he tells the others what the doctors say. But he's also at appts for me to fill in my fibro fog blanks for doctors. Good luck going forward with a new life of what you can do, and God bless!

Jan 07, 2015 8:02 AM

So my clinical supervisor, who is also a therapist, and I have been talking a lot about my fibro. He says there is a reason for it and that I have been given a gift. I just have to now figure out what kind of gift it is.... Which is hard when a am tinged with pained and fatigued 99% of my life! I have a feeling it is something about slowing down and smelling the flowers, like you said krik. We have to do this people! We will not let this illness bring us down!

Jan 07, 2015 8:20 AM

Let's do it jesswoo! I'm right beside you & kriket & others who maybe can't defeat the illnesses but can prevent it from defeating us!🙌

Jan 07, 2015 9:43 AM

One thing most people say is that they're not believed. People think their drug seekers or hypochondriacs or attention seekers. To me that hurt more than the pain I was in sometimes. On this site I feel like I have more advocates then I can count. Get your strength from that fact and remember that no one can actually tell you your not in pain. Pain is what YOU say it is, not what others think it is.
Be blessed my new friends. We will talk more and glean from each others tried and tested wisdom.
K. 💋

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