Fibromyalgia

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Fibromyalgia

Postby JonQ » Mon Aug 03, 2009 3:20 pm

Hi-

I joined this forum just a few days ago, after finding some useful info. So now I wanted to ask if there's anyone with experiences of fibromyalgia.

I was diagnosed around 4 years ago, and have sinced improved immensely. At that time, walking and yoga was about the only thing I could do, physically, because of absolutely constant pain worsening with exercise. Now I even practice capoeira and have little to no pain most fo the time. It's been something of trial and error, most of it error.. but slowly, it's gone the right way, with extreme caution in exercise, eating well and finding medication that works.

But I still have very little stamina, in spite of all the exercise, and in a week or two without it, I lose what little I have. I also suffer from a lot of fatigue. I take creatine, and have started with DHA/EPA, in addition to regulars like calcium and magnesium. Also got a hyperexpensive medication prescribed (modafinil), which I won't be able to take in the long run. And would prefer to skip it by now, to be honest.

Does anyone have any experiences or suggestions to share? I have read the usual guidelines for fibro a million times and know them by heart, so it's not basic info on the syndrome I need, but personal experience of fibro, veganism and exercise/fitness. Would be greatly appreciated 8).
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Postby Boo » Mon Nov 02, 2009 7:00 pm

Hi JonQ,

I'd just like to start by saying well done in managing your condition so well! It's good to hear of someone who is making progress and enjoying life despite the struggles the condition can cause.

My dad suffers with Fibromyalgia as well as spinal defects and it has completely ruined his life. He suffers immense pain and struggles with day to day tasks.

I was wondering if you are under a pain specialist? My dad goes to a consultant once a month and they assess his condition and go through mind techniques to help him block the pain and work through the fatigue. Obviously if his fatigue is really bad he cannot overcome this, but despite the severity of his condition he does have his good days from doing this.

The main thing I will stress is not to let it get you down. When my dad started to get depressed from his illness it only made things worse as the added stress only made the fibromyalgia worse, so carry on with your healthy lifestyle and make sure you enjoy each day. If you are having a bad day, see it as your body needing to rest and think that there is always tomorrow to try again.
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Postby draco880 » Tue Dec 15, 2009 4:24 pm

Yeah, great job on managing the fibro. My mother has that as well and it's really, really hard.
I wanted to note that there's a chemical called adrafinil that's used in France and a few other places to do the job modafinil does in the US, and it works because the liver turns adrafinil into modafinil. Here's the wiki. Adrafinil is not considered a drug in the US, so you can buy it online. I used to take Provigil when my back was all messed up, mostly to balance out the painkillers, and eventually my insurance refused to pay for it. Adrafinil works just the same, although you have to wait a couple hours for the liver to do its thing.
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Re: Fibromyalgia

Postby JonQ » Thu Sep 02, 2010 10:36 am

Hello Boo and Draco, and thank you so much for your encouragement! I hadn't seen these replies before; just returned from a hiking trip, pleasantly surprised at how well my body survived it 8).

I haven't seen pain specialists; initially, I was referred to a reumatologist who diagnosed me, after that, I have seen GPs when needed. I'm a student and student's health care is mostly like that. At any rate, right now I'm well enough not to need frequent visits there anymore, to my great relief.

As you say, Boo, about taking a bad day as a sign of needing a little extra rest is so extremely important; just so difficult to remember sometime...

Thanks for the adrafinil tip, Draco! I shall look into that, sounds very interesting!!
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