Time to Get Real

Just yesterday, a single sentence from a Facebook friend led me to ponder something I take for granted.

I am a chronic pain patient, most doctors’ worst nightmare, and I am tired of being treated like a second-class citizen.

Among the litany of ailments, which I won’t list here, I have fibromyalgia.

I can see the virtual eye rolls from those who think that fibro is a “garbage can” diagnosis meant to shut up the patient who presents with debilitating pain, exhaustion, and memory issues.  And, it was just that.  Until some dedicated scientists and doctors began to really study the disease.

Now, it’s an accepted disease and the criteria for diagnosis has been narrowed and focused to the things that nearly all fibromyalgia sufferers share.

All of this has little to do with this post, but I use the first few paragraphs to set the stage for the real reason I’m writing.

It’s the shame, the guilt, the overwhelming feelings of inadequacy that so many chronic pain patients experience.

We feel it every time we have to explain to a doctor that yes, we hurt, and yes, we understand your lab work doesn’t give any indication why.

We feel it every time we encounter a pharmacist, skeptical as to why we need yet another month’s supply of an opioid medication.

We feel it every time a family member or friend – always well-meaning, of course – tells us about the latest breakthrough in treating chronic pain with home remedies like beet enemas and anecdotal evidence that it worked for someone’s brother’s wife’s mother.

Or worse, when friends and family tell us we just need to get up and do more…everything. Walk, exercise, go vegan, deny gluten, and drink lots of water.  I mean, if we did all that we’d be fine, right?

We look normal.

We (usually) act normal.

We desperately want to be normal.

We don’t want to wake up every morning more tired than when we went to bed.

We don’t want to hurt from the top of our heads to the tips of our toes.

We don’t want to feel like we’re slogging through molasses that gets thicker as the day wears on.

And so many of us don’t want to have to rely on a pill to get us through the next day, the next few hours, until we can take another to dampen the pain to the point of making it possible to function for a while.

Mental health gets a bright spotlight, and almost everyone is understanding and caring. Take a pill to elevate your mood, or keep you from going all stabbity?  That’s considered a good thing.

Chronic pain patients don’t always get that same TLC.

And we need it.

What we don’t need is to be called “addict” or “drug seeker” because we rely on chemicals to get through the day.

 

 

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Posted on January 21, 2016, in Fun With Fibromyalgia, In All Seriousness, Uncategorized and tagged . Bookmark the permalink. 4 Comments.

  1. Oh, awesomesauciness, while I (thankfully) do NOT feel your pain, I absolutely empathize. My Mommy had Chronic Fatigue Immune Disfunction Syndrome, a.k.a. CFIDS, a.k.a. Chronic Fatigue, a.k.a. “it’s all in your head” for FORTY-plus years. It was only in the last ten years of her life that there was a diagnosis, and/or treatments, and an ability to get DISability and a handicapped tag to hang in the window of her car when she really really needed it. Like you, she LOOKED normal to the outside world. Like you, she slogged through molasses to get through the day. Like you, she struggled to “accomplish” anything, and to feel worthwhile and not crazy. She was pain-free, for the most part, or at least as far as any of the rest of us know. She was just ALWAYS BONE-TIRED.

    Her biggest fear through it all was that what she had was inheritable. My gratitude goes beyond the (fact?) that it is not; I’m grateful that the worst I’ve personally suffered is with Depression, which, as you say, no longer has any stigma attached. I’m grateful that Mommy was eventually diagnosed, which does at least drop the stigma a little. I’m grateful that she was on an upswing in her energy levels near the end. She died in a car accident almost a decade ago while living her adventures. She suffers no more.

    My wish for you is that your pain will be managed, and that you’ll learn to either ignore the haters/doubters or use your awesomesauciness to cut ’em down to size, and be at peace while living your adventures.

  2. Oh emelle, I am so sorry you lost your mother. And thank you for the good wishes. Some days are worse than others, and winters are always a special kind of shitty.

    Hugs to you, my dear.

  3. I stumbled on your blog via “it just gets stranger”. I thought I’d share something with you that happened to me recently. I have been in pain for YEARS and YEARS. Maybe 5 years ago I went to the dr and said you have to figure this out…I got a massage and the guy massaged the top of my head and it HURT! Rubbing the top of my head shouldn’t hurt! So she got out a big medical book and looked at fibro pressure points and “tested” me…I had 13 of the 18 sore points right then. She tried me on a few different antidepressants looking for the right one to help with the fibro pain. I ended up on Savella and have been taking it (and supplementing it with Ibuprophin) for several years. I told you my background to bring you up to now. 5 weeks ago I had gastric bypass surgery (ru-en-y) to be exact). I can’t eat any bread, pasta, rice or popcorn products for the next 6 months. I don’t know if it’s because of the surgery or my diet change but I DON”T HURT ANYMORE! Today is the 1st day in over 5 weeks I have some lower back pain…I can manage that with ice! I went to the dr. last week and we discussed taking me off the Savella. I’m in the process of weaning myself off it now! I just thought you might want to know to see if a change in diet may help…

    • Hello Diannia and welcome!!! I have tried no gluten, no sugar, and so on. Nothing worked. Cannot take NSAIDs, unless I enjoy puking, which I do NOT, so I take a combination of pain medications to control the fibro symptoms. Most of the time it works like a charm, but when it’s really cold or really wet outside…sigh…Fortunately, I live in Texas where it’s warm and dry most of the time. I’m so happy you found a solution, and good luck on your weight-loss journey. I’ve been on mine for 9 months now, and have lost 45 lbs. (no secret tricks, just diet and exercise). My joints are happier, but the fibro is as it’s always been…getting progressively worse. Anyway, long-winded comment to really say thank you, welcome to my corner of the ‘Net, and come back and visit often. 🙂

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