Showing posts with label chronic pain. Show all posts
Showing posts with label chronic pain. Show all posts

Monday, May 16, 2016

Fibromyalgia Awareness: Resources for Patients and their Families

Because May is Fibromyalgia Awareness Month, I wanted to compile a list of online fibromyalgia resources for you to use and share.

Whether you're new to the diagnosis and looking for answers, the loved one of a fibromyalgia patient, or a seasoned fibro warrior, I'm sure you'll find some—if not all of these links—helpful.

If there are additional resources you'd like to share, please post your links in the comments.

Fibromyalgia Resources For Patients & Families


National Fibromyalgia Association
FMaware.org keeps you up to date on important information pertaining to fibromyalgia and related topics.

FibromyalgiaAwareness.com
Dedicated to raising awareness about Fibromyalgia and offer online support. Find fibromyalgia information, news, interviews and tips.

MyFibroTeam
A social network for people living with fibromyalgia.

Questions and Answers about Fibromyalgia
This article contains general info about fibromyalgia: what fibromyalgia is, who gets it, and what causes it, how it's diagnosed, and how it's treated.

Mayo Clinic Fibromyalgia Symptom List
Are you wondering if you're experiencing symptoms of fibromyalgia? This list may help.


Available Fibromyalgia Treatments


Fibromyalgia treatment options vary based on symptoms and approach. Treatment might include any combination of the following:
  • Prescription drugs
  • Alternative therapies including massage, physical therapy, chiropractic treatment, and acupuncture
  • Vitamins and supplements
  • Moderate exercise under doctor's supervision
  • Lifestyle changes, including diet, meditation, and self-pacing
People with fibromyalgia may be treated with pain medicines, antidepressants, muscle relaxants, and sleep medicines. Learn more about FDA-approved treatments at fda.gov.

Aquatic therapy has been recommended for the treatment of fibromyalgia syndrome (FMS). Learn why in this summarized study.

Vitamins (especially Vitamin D) have been suggested for helping ease the symptoms associated with fibromyalgia.

5 Best Workouts For Chronic Pain
If you have fibromyalgia, exercise may improve your quality of life and reduce pain. Prevention lists the best workouts for fibromyalgia sufferers.

Fibromyalgia Books


Take Back Your Life: Find Hope And Freedom From Fibromyalgia Symptoms And Pain by Tami Stackelhouse
Foods that Fight Fibromyalgia: Nutrient-Packed Meals That Increase Energy, Ease Pain, and Move You Towards Recovery by Deirdre Rawlings

The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy! by Jacob Teitelbaum M.D.

This post is part of Being Fibro Mom's Chronic Friday Linkup.

Friday, April 22, 2016

Fibromyalgia, Chronic Pain, and the Movie Cake

If you haven't yet seen Cake but want to, you might want to bookmark this post for later.


Sunday afternoon, my husband, Dan, and I were looking for something to do that didn't require a whole lot of effort. 

"Hey," I said, "Cake is still in our Netflix queue."

A part of me wanted to see it when it was still at the theater—the part of me filled with delusions about being able to sit in a comfortable chair for 102 minutes, let alone an uncomfortable one. The sane part of me, however, knew I'd be better off watching it at home. And, luckily, the sane part of me still wins most of the time.

Five minutes into the movie, I was fighting tears. Jennifer Aniston was so believable playing the role of Claire Bennett.

"It's making me hurt just to watch her," Dan—who knows chronic pain in the form of psoriatic arthritis—said. I agreed. (In fact, since I saw the movie two days ago, I've been in a flare. Perhaps I identified with her pain a little too much for my own good?)

There were many things in the movie to which I could relate, but two really struck me: Claire's hair and her clothing. It's not that I want to go out in public looking like a giant sack of potatoes; it's just that it's the best I can do most of the time. On the rare occasion that I feel up to doing more to make myself presentable, I don't want to waste my energy on something so superficial. I'd rather use my energy to make a meal or wash and fold some laundry. So combing the tangles out of my hair after a shower? Not on your life, man.

If you can tell that my hair has been blown dry, you know I'm having one of the best days I have had in 14 to 18 months. Or at least I want you to believe that I am.

Light a Candle


Here's a little exercise that may help you comprehend how chronic pain affects everyday life for people. Go grab a butane lighter (one of those multi-purpose deals) and a candle. Now light the candle with the lighter. Can you even imagine not being able to make one of those things work? I couldn't either. Until yesterday.

My hands are so weak right now that I have to use both of them to produce a flame. I need one hand to press the safety mechanism and the other to engage the trigger. Once the flame is rolling, I may or may not be able to connect the fire with the wick of the candle. This simple task used to require a thumb, a forefinger, and barely a thought.

Now imagine making a few of these can't-do discoveries every week for a year or more. The pain drains you of everything—will, muscle tone, positive attitude.

My luxurious bath towels are too heavy to hold, so I have to go back to old skimpy ones.

I get winded trying to roll over in bed. Sometimes I can't muster the energy to change position until long after my legs have started aching.

Do I get depressed sometimes? Fuck yeah, I do. You would too.

People with Chronic Pain Judging Other People with Chronic Pain


Back to the movie though. At some point during the film when Claire was trying to get her hands on more opiates, Dan told the TV that Claire needed to at least try. I immediately came to this fictional character's defense. A few minutes later, though, and I was the one being dismissive of her struggle. 

Oh, well at least she's got physical scars and a clearly identifiable cause for her pain. 

"Why are we like that?" I asked Dan. "If anyone's going to be able to empathize with someone who has chronic pain, it's going to be someone else with chronic pain, right?" 

It wasn't really about empathizing with a fictional character, though. I was expressing my frustration that her story wasn't exactly like my story. Because I want people to get me. I want my own validation. Screw Claire Bennett. Whoever she is.

No wonder people with addictions, chronic pain, and invisible illnesses become jaded with support groups. You have to go in with the understanding that even after sharing the most intimate details of your personal story once a week for months or years, not one other person will know what it's like to be you. And people who've never been to a support group in their life will ask helpfully, "Have you tried going to a support group?"

Wait a minute. Do I mean that in addition to losing a child, getting a divorce, paying bills, overcoming the constant pain and disabling results of the wreck, fighting drug addiction, taking a shower, and suppressing thoughts of suicide, Claire Bennett has to dig even deeper and figure out by herself how to manage her own expectations at group therapy?

Yep.

And the kicker? Group therapy, like the pool therapy that torments Claire, was probably required by her doctor. She has to prove to her prescribing physician (someone who probably only intellectually understands what chronic pain is) that she's deserving of a few meager moments of opioid-induced respite. How does she prove her worth? By SUFFERING.

Then she has to hide her addiction to said painkillers so people don't label her a pillhead and make it even harder for her to find relief. Anyone still wondering why Claire squirreled away meds behind that painting in the hallway?

Anyone still looking down on her for making Silvana drive her to Tijuana?

I don't take prescriptions for my chronic pain. But what if I need them someday? Is this what I have to look forward to?

The End


So eventually Claire decides to kick the painkillers, offers conciliatory vodka to her group therapy leader, and gives water therapy another go. She brings Nina's surviving child (Nina is the woman from group therapy whose suicide haunts Claire throughout the movie) a shark kite and a cake for his birthday. Then the movie ends with Claire finally sitting upright in the passenger seat of a moving vehicle, presumably for the first time since the car accident that killed her own son. If all of this gives you warm fuzzies and fills you with optimism for Claire's future, congratulations! You still have no idea what it's like to live with chronic pain.

Just because Claire's got her shit together now doesn't mean she'll have that luxury tomorrow. Perhaps the hardest part of living with chronic pain is having a few good days, and then having that progress ripped right out from underneath you without cause or explanation.
 
This post was originally published on my old blog on July 28, 2015.

Sunday, April 17, 2016

The Fibromyalgia Pain Scale and My Celiac Suspicions

I don't know about you, but for me the numeric scale for fibromyalgia pain is exponential. Like the Richter scale for earthquakes. Even though going from an 8.5 to an 8.0 doesn't seem like much on paper, it can have a pretty dramatic impact on my actual life.

For instance, after days of barely being able to lumber to the bathroom at an 8.5 on the pain scale, yesterday I dropped to 8. That meant getting outside, doing a load of laundry, changing the sheets on my bed, and unloading the dishwasher.

Sure I'm paying the price this morning, but I was a semi-functioning member of society yesterday. That helps.

The change was just enough to improve my mood and soothe my depression. One night I thought I was going to die or else suffer for the rest of my life. The next night I pondered how nice it would be when (not if) I lost 30 pounds and could stand to wear a bra and drive myself places.

***

Yesterday I finally decided to bite the bullet and go gluten free. After a blistery looking rash and canker sores showed up with my most recent flare, I can't shake the suspicion that I've got Celiac. I have an aunt who has it, and though she's not a first-degree relative, there are still studies that show a greater prevalence even among second-degree relatives.

At first I wanted to keep eating gluten. (You see, if you have Celiac and aren't eating gluten your test results may come up negative and you'll miss getting a real diagnosis.) But when I discovered I couldn't get in to see my gastroenterologist until July, doing nothing to try and end my flare didn't seem like an option.

So here I am, 24 hours gluten free.

I'll keep track of how things go. And if Celiac seems plausible, closer to July I can always do a gluten challenge for a couple of weeks prior to my appointment.


Sunday, April 10, 2016

Pain Level: FML

Originally published on my old blog on November 8, 2015.

This morning as I was using the towel bar to lower myself onto the toilet, I had a thought. What if this towel bar gives out?

Every inch of me is screaming with pain. I can hardly move, and I'm reduced to asking my husband for help with the most absurd things. "Hey, if I put the chicken patties in the toaster oven, will you assemble the sandwiches?"

When things get this bad, I can't help but try to identify a reason for my suffering. I let myself get cold yesterday, sitting outside while my husband did some yard cleanup. Maybe my muscles don't like the cold. I had an alcoholic beverage three days ago, maybe it's taking this long to give me a hangover? My food diary shows I haven't taken a diclofenac in a week, maybe I've got some inflammation that's raging out of control (even though none of my numerous medical test results point to a problem with inflammation). I started having two cups of coffee a day. Maybe the coffee creamer I use is poisoning me.

It's hard to accept what's more likely true—that nothing I'm doing is causing the pain and nothing I can do will make it go away.

That's why I wish people would stop fucking asking me if I've tried going vegan, or cutting out carbs, or eating only organic, or exercising more. In the past 18 months, I've tried everything, okay? I don't want to feel like this, and I certainly don't enjoy every little aspect of my life being scrutinized like I somehow brought this upon myself.

Besides, if a random alcoholic treat or piece of candy with Yellow #5 in it or a processed chicken breast was so dangerous, the entire fucking world would be ending. Your garbage men would have to quit their jobs because the noise from the truck's compactor would make them puke. The people stocking the shelves at your local grocer would be fired because they couldn't lift a 12 oz. can of beans above their belly buttons.

What really gets in my craw are healthy people admonishing people with illnesses over their dietary choices. "Oh, I went 100% gluten free and I feel so much better. You're not doing yourself any favors by eating that PB&J."

In my mind I'm like, Let me get this straight, your perfectly healthy self went gluten free and now you feel even better?

Go die in a tire fire, asshole.

This kind of exchange with people has been bothering me for a while. I've just been absorbing the rage and convincing myself that people who do this "mean well." But today I'm like, why is it that I'm always the one who has to assume the best of Person B in these situations?

See, I have always been terribly hard on myself, so the first thing that ever came to my mind when my health started deteriorating was that I was doing some horrible thing to myself. When someone comes along and asks these "helpful" diet and exercise questions, it's insulting.

Whatever's wrong with me just is.

Wednesday, April 6, 2016

Today is Migraine Day—Yippee!

As they say on the local news here in Central Illinois, "There's going to be some weather today."

The idea that weather only happens when whether is bad? Well, that's odd to me. Isn't there weather every day? When my husband and I moved here and first heard meteorologists talk like this, I scratched my head. It's been grating on my over-sensitive nerves for about three years now.

It's weird, right? It's not just me? Sunshine, poofy white clouds, blue skies—that's all weather too!

But sunshine eludes me today. A cold front is moving in, the sky is dark. And that brings me to the whole point of this post: rain and storms are my migraine triggers and good lawd, I am feeling it.

A migraine for me involves splitting pain above my eyes and across the lower back of my head from ear to ear. The pain radiates until my whole head and face throb, and then I start seeing the dreaded squiggle in my field of vision. Next, one of my arms will go numb for a while.

So that's what I'll be doing today. What are your plans?


Friday, March 11, 2016

5 Tips for Dealing with People Who Don't Believe Your Chronic Pain is Real

This might seem a little dark. It's supposed to. If you'd like to add your own tip, please do so in the comments. But let's all please remember to have a little fun with this and be as snarky as humanly possible.
  1. Tell them to fuck off.
  2. Hit them with a sack of oranges. Then, before they have a chance to bruise, remind them that they look fine.
  3. Tell them you'd love to continue chatting, but you've got another chapter to write in your self-help book, How to Fake Hurting and Live the Life You Always Wanted.
  4. Hug and touch them repeatedly while reminding them not to worry because you're not contagious.
  5. Start writing. Then mumble, "I knew there was someone I forgot to take off the will."