Fibromyalgia Awareness – Make My Voice Count!

May 9, 2012 By Leave a Comment

 

This is not me speaking in the video above, but this IS my life. THIS is how it really is living with Fibromyalgia. Most people think it's a joke, a lie. Or worse, that I am just a slacker trying to avoid working for a living, that I'm looking for a handout. When really, I spend most of my days in a dark room, in agony, trying to avoid noise and light that physically hurts me. Taking medication to dull the constant pain that NEVER goes away. Trying to take medication on time because nothing is worse than waking up, in pain, because the pain meds wore off.

This is my life. There has to be better. Doctors, politicians and health care need to pay attention and get with the reality of Fibromyalgia. How many of us suffer in silence and darkness because no one listens, we don't matter. We are liars looking for hand outs. Support Fibromyalgia Awareness people. Make our voices count!

International Fibromyalgia Awareness Campaign

May 12th is Fibromyalgia Awareness Day

Cities in Canada that recognize National Fibromyalgia Awareness Day

 

Filed Under: FM in the News, FM Thoughts Tagged With: ,

Fibromyalgia Night Pain

May 2, 2012 By Leave a Comment

I've recently begun to frequent a Fibro support group/forum on healthunlocked.com. It is created by people with Fibro but the forum is on a 3rd party website which I assume is free. The people there are friendly enough and the format is very simple (nothing fancy like some message boards). You can write a blog post on the site, or ask questions about pretty much anything you like that are answered by the people who frequent the site. This is NOT a forum run by medical professionals. 

Anyhoo, I have left some lengthy comments there in response to folks that seem newly diagnosed. A recent post about dealing with night time pain inspired this long comment reply:

 

Yes I have been where you are many a night. Try to slowly and gently stretch out where you are hurting. Maybe ask your doctor to show you some gentle stretches specific to YOUR pain.

Fibro is different for every single person. We all have similar symptoms but some may have some symptoms where others have different pain in different areas. Then there is drug side effects lol. Same thing. Some people do well with some drugs, others can't tolerate this or that drug at all.

It's a long painful process to find the right things that work for you. So make sure you talk to your doctor A LOT. Befriend your pharmacist! He/she knows more about drugs than any other professional because that is their job. In fact, make sure you see the same pharmacist all the time if at all possible. Communicate with your pharmacist even, what your experiences are with this or that drug. My pharmacist does a yearly profile go-through with their customers even, where possible and only if you want to. What drugs are they no longer taking, what supplements and so on.

Communication and being active in your own health plan for the future will help you so very much! And don't take no for an answer. If your doc doesn't know the answer or won't help, find one that does! Or a resource online. Again, back to that Pharmacist. Ask him/her what other medications he is aware that fibromyalgia patients are trying in his store. My pharmacist spoke to my doctor on the phone even, to talk about a drug new to her. So far this is the ONLY one that is dealing with the majority of my pain.

If you have epsom salts at home, that is always a huge help for me even during my worst pain. 2 heaping handfuls and 15-20 mins in the bath will help some, I promise!

What do you do when you are having a really bad pain night? What do you have in your magic box of tricks to get you through the long night?

Filed Under: Chronic Pain, Coping Tips Tagged With: , ,

Sleep rules my life

April 25, 2012 By 4 Comments

All I've been able to do lately is sleep! It's been like this for nearly 2 weeks now, this is the 2nd week. Literally, all I do is sleep. Refill my CPAP humidifier reservoir up when I wake up, eat if it's been a long time since I ate last, check email and go back to bed. Last night I went to bed at 8pm, slept til 1am. Took my meds, slept til 5 am. Now I'm so tired I need to go back to bed again.

My exhaustion is overwhelming. It's an effort to stand up and walk to the damn bathroom. Yes! I've been eating. Nothing different really. I've made sure I've drank enough water. Again, that's not different. The only thing different is the water pill that was added to my prescriptions. But my family doc says there shouldn't be any reason for that to cause me MORE exhaustion. 

Maybe I'm just working out some kind of spring flu/bug. As you may know, Fibromyalgia symptoms often feel flu-like. That would include the exhaustion and clammy skin with sweats I've had lately too. Hmm.. or maybe it's just freaky stuff with the weather changing. It was warm for a few days and now it's been cold again.

Who knows! Welcome to my life lol. And on that, I bid you adieu. Back to bed for me, before my eyelids slam shut and I pass out in my computer chair.

Filed Under: Journal Tagged With: ,

Stand up and be a woman!

April 12, 2012 By 2 Comments

 

If you haven't heard about Ashley Judd's essay on The Daily Beast, you've been in a media black out, asleep or living in a cave. It's quite an amazing thing, what she did by writing that article. Instead of flaming back at the various media, she went on to tell us all exactly what the media (and society in general) were really talking about when they assumed she *must* have had something done to look the way she did. Ashley pointed out that either way she couldn't possibly look as good, or bad (re the "puffy" face), as she did without cosmetic surgery. 

I am 42 and one of those lucky people who still don't have wrinkles. No one ever believes my age when I tell it. My skin is pretty good too. I get blemishes sometimes, but overall my skin is pretty good. Those are things I don't mind people pointing out even while I dislike the fact that they are pointing them out. To me it's more of a "you have such beautiful skin" (too bad about your weight) or, "you have no wrinkles! I'd never have guessed your age" (too bad about your weight). So while they give out the compliment, you know what is unsaid.

The fact is I've struggled with depression and weight all of my adult life. And while I was aware of how people judge me and label me as a fat person, I didn't truly comprehend how BAD that is nor how much it really added to my stress and depression. Perpetuated it even. I suspect many women are having some of the same feelings about Ashley's thought provoking post.

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Filed Under: Journal Tagged With: , , , ,

Fibromyalgia Noise Sensitivity

April 10, 2012 By 2 Comments

I've been taking an online course on how to cope with Fibromyalgia. It's done via email and though we are told to keep the posts short, sometimes it's just impossible when you have lots to say. One of the members of the course had recently begun to experience noise sensitivity and had asked the group how their experience was and how they felt about it. The following is my response. I thought to share it here because it may help you too.

For me, noise is a constant issue. I wear ear plugs 24/7 to tone down background noise where ever I am. It helps, but on those days were everything is hypersensitive any constant type of noise is like a hammer. Like nails down a chalkboard, if I can't get away from the noise I have to STOP it. If I can't stop the noise then I have to leave where ever I am. If that means I'm at home and I have no where else to go.. well let's not go there. Think of construction for 6+ months on the outside of our building. Jack hammering the cement railings off the balconies, then putting up iron ones – all 20 floors. Yeah I do NOT recall that time too fondly.

As I sat here and really thought of why noise bothers me, I have to say that I think it's the presence of yet one more thing that I can't deal with. Like being hypervigilant all the time, living in "fight or flight" mode (on the bad days everything makes me jumpy). Where noise is one more thing to add to the top of things you are trying to cope with. Maybe noise becomes one TOO many? That noise may be one of the few things you can control, or stop. Then I was thinking, too, that maybe our energy envelope comes to play here too. Trying to cope with the noise is draining, eventually it becomes too much and you have to take action to stop the noise.  

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Filed Under: Coping Tips Tagged With: , ,
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