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

FDA-Appoved Drugs to Treat Fibromyalgia Pain

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 for Fibromyalgia

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

Vitamin D Supplements for Fibromyalgia

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

The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor by Ginevra Liptan

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.

Amy's Bowls Mexican Casserole Gluten Free Review

I've completed three weeks on a gluten-free diet. Without the help of packaged foods and my husband, I don't think I'd have made it this long.

Eating gluten free is so, so hard, but especially for someone who's so physically spent she struggles to walk down the hallway, is on the verge of passing out after every shower, and doesn't possess enough strength at the end of an average day to roll over in bed at night.

With my perpetual brain fog, reading an ingredients list is a challenge. Nevermind trying to plan meals or alter recipes at this stage. It. Just. Isn't. Gonna. Happen.

At least for now.

So here's another of my gluten-free food reviews. I bought this myself and haven't been compensated in any way for what I'm about to tell you.

Amy's Bowls Mexican Casserole

Price: $3.99
Count: 1
Taste: 5/5
Texture: 5/5

The Bad News
As with everything gluten free, it costs more money. Four dollars for a meal that only serves one person? I don't know how much money you make, but for me that's brutal. Chronic illnesses are so freaking expensive, throw special dietary requirements in and...good God.

The Good News
This tastes fantastic. I've always found that Mexican dishes stand up really well to the freezer. This one does too. It doesn't taste like a frozen dinner at all, and when my husband wants to get a burrito from the local Mexican restaurant, I can pop one of these in the microwave without feeling left out or sorry for myself. I think it's that yummy!

The Verdict
Buy this. Serve with pico, sour cream, guacamole, lettuce, or whatever you like. (For Cinco de Mayo, I splurged and had a Cayman Jack Margarita*.)


* This drink is "crafted to remove gluten." Not recommended for those with celiac disease, but I tried it anyway without reaction. Don't be stupid like me, unless you're stupid like me.

Practicing Self-Care with a Spoonie Progress Report

Via The Good Vibe on Bloglovin'

At the end of every month, I have to compile a progress report for my job. It's a little tedious, but oddly rewarding.

To complete the report, I go through my worklogs and note every project I worked on for the last 30-ish days. It's arranged so that my boss and my boss's boss can see what a badass I am at a glance. But you know what? It also helps me see what a badass I am.

As a Spoonie, I need to take note of the things I accomplish on any given day. It's so easy (but so futile) to obsess over all of the things I can't do or can't do as well as I used to since my fibromyalgia diagnosis.

For the record, that includes putting a sticker on my Chart of Life™ any time I:

• Take a shower
• Make a meal
• Put on real pants
• Fold a basket of laundry
• Change the sheets on my bed
• Leave the house
• Put an entry in my food diary
• Make time to soak up some sun

You get the idea.

I'm lucky to have a full-time job with benefits, but there have been too many days in the past couple of years where I've been riddled with anxiety, fretting that I would lose my position due to chronic illness.

If I don't work, there is no money to pay the mortgage or get groceries. And being sick all the time is catastrophic enough.

But I'm not going to worry about those things today. I'm going to take another glance at my progress report for work and give myself a hellzyeah! (or two) for a job well done, despite life's mentally and physically crippling challenges.

Even if you don't work, I encourage you to keep track of all the little but important things you do. For a few minutes a day, you can shift your focus. That's empowering.

So grab a journal or open a new draft in your blog and start your Spoonie Progress Report for May!

What It's Like to Leave the House with Fibromyalgia

I spent about two hours outside this weekend, including a short trip with my husband to our nearest big box store's garden center. According to my D Minder vitamin D app, I made nearly 8,000 IUs of vitamin D this weekend.

I accomplished something!

Standing up was hard and walking around was even harder. I've been struggling mostly with muscle weakness and vertigo lately, so I clung to the cart the entire time. Toward the end of the ten-minute romp through potted plants and stacks of mulch, all I wanted was a chair or bench. My legs were so tired. So shaky. So weak.

My husband paid and chatted with the cashier. I just smiled; my brain felt slow. I needed to focus on standing. I worried that if I tried to talk, I'd lose focus on my legs and just collapse embarrassingly.

When we made it back to the car, I dropped myself into the passenger seat. There's no such thing as controlled motion with me right now. Then I had to clutch my pant legs and lift so I could get my legs inside the vehicle and close the door.

The rest of the day at home was a struggle too, but at least I got to struggle while wearing pajamas. With lawn mowers going all weekend and fuzzy seeds and pollen floating in the air, my allergies were intense. I took Zyrtec; it helps tremendously with my sneezing and watery eyes, but can leave me my dizzy and extremely tired. So I napped in a lounge chair in the back yard while my husband spread mulch and planted rhubarb for me.

When it was time to eat dinner, I was so weak. I couldn't life myself from the couch. I couldn't cook my own dinner. I went to bed at 9:00 and fell asleep right away. At least I didn't have to deal with insomnia too.

My Aunt Has Celiac, Do I?

By Bluemoose

I've been thinking about and reading about Celiac Disease a lot in the last week as I attempt to find some relief from my eternal suffering chronic illness.

I'm nearly a week in on my gluten-free diet, though on Day 2 I had already accidentally glutened myself. (Not all Reese's peanut butter cups are safe, in case you were wondering!)

It's way too early to know if the diet is helping or if I'm just sliding out of my flare, but I do feel like a different person. My mood is improved, my bloating is decreased, and my constant headache is gone. I also feel like my gut is mobile again.

This is where I talk about my poop. I mean, someone's got to do it.

I'm spending a lot of time in the bathroom every day now that I'm gluten-free, but I feel that's preferable to the past, where it wasn't uncommon for me to suffer three to five days of agonizing constipation followed by a single day of diarrhea. On-again, off-again was my pattern. It was horrendous, and the "bad" days made it impossible to leave the house. If you know what I'm sayin'.

Anypoo, when I was talking to my mom today, I thought to ask her about my aunt's (her sister's) celiac diagnosis. Here's how that part of the conversation went.

Me: How old was Aunt C. when she was diagnosed with celiac?

Mom: 56. But she's fairly certain she had it for at least 20 years before her doctor ever thought to test her for it.

(Hmm. 56 – 20 = 36. I am 36.)

Me: With my last flare, I had new symptoms—skin rash and canker sores. So I'm going to bring it up in July at my next doctor's appointment. Everything seems to match up, plus it runs in families.

Mom: Aunt C suffered from skin eruptions too.

I know that I need to prepare myself for the possibility that celiac tests will come up negative like everything else in my life so far, but it's hard. I so desperately want real answers.

New Symptoms: Could It Be Celiac?

Canker sores on the inside of my cheeks and on my gums? Check.

Weird, itchy rash on the back of my hands? Check.

Petechiae on my arms and legs? Check.

In this week's installment of Guess What the Hell is Wrong with Chronic Leigh, I contemplate the probability that I have undiagnosed Celiac or Crohn's...or, you know, anything in the IBD family. (PSA: Don't take your normal bowel movements for granted, people. Not ever.)

My current symptoms, so I don't forget them:

• All-over nerve pain
• Extreme muscle weakness/fatigue
• Headaches
• Rash
• Canker sores
• Petechiae
• Diarrhea
• Consitpation (yes, both)
• Vitamin D deficiency
• Gait and balance problems
• Dizziness
• Hypothyroidism (previously managed with meds, but suddenly and unexpectedly off the charts TSH results)
• Bloating
• Dry eyes and mouth
• Swelling of hands and feet
• Hiccups
• GERD (currently treated with Nexium)

I am relieved to have some visible symptoms on that list. Sadly though, I can't see a GI specialist until July 11! So, ever the resourceful Spoonie, I took pictures of my canker sores and my blistery rash to show my doctor. My hope is that he will consider one of the following possibilities:

1. I don't have fibromyalgia at all.
2. I do have fibromyalgia, but there is something else going on.

As I go on two years of almost constant physical decline, I can't shake the feeling that I'm wandering through life with an undiagnosed illness. And since it's not diagnosed, it's not being treated.

One of the many, many shitty things about suffering from chronic pain and invisible illnesses is that people doubt you so frequently you begin to doubt yourself. For example, when I complained that I hurt all the time, my first doctor said I was depressed and had fibromyalgia.

He did that tender points test and diagnosed me with fibro when all those spots on my body hurt. Looking back at that I'm like, dude, you could have touched me anywhere and I'd have cried out in pain. The fact that you selected those 18 points on my body means absolutely nothing. Pick 18 more; those hurt too.

But back to my main point. When my rashes and sores popped up during a severe flare last week, I was elated. Visible symptoms are validation.

I am not making this up.

I am not just lazy.

I am not just looking for attention.

I AM LOOKING FOR A DIAGNOSIS. (Some sound medical advice on how to navigate whatever is happening would be great too.)

Take My House, Please!

So, I'm boob deep in the middle of a fibromyalgia flare that's been building for about two weeks when I get some horrible news.

Things are still a little too raw for me to spell them out in great detail here, so let's just say that my financial stress was compounded by an exponent of about ten with a series of emails I received between me, my general contractor, and my Realtor regarding a home I've been trying to sell for going on three years.

Yeah, three years.

I got a new job in a new state in 2013, and have not been able to sell my old house yet. There's a certain level of stress that comes part and parcel with that sort of predicament (as well as a shit-ton of debt). It is not, I assure you, a stress that comes and goes. I have two mortgages and one income every day until that piece of crap sells. The weight of that burden is ever present.

Honestly, there have been many times since my fibromyalgia diagnosis when I have wondered if this stress is the root cause of my fibromyalgia. What if I could just sell that property? Could I be normal again?

It's kind of a dangerous question to ask. Because when the house is no longer my responsibility and I'm still fighting the pain and malaise every day of my life, it'll be that much harder to scrounge up some hope.

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."

My Reasonable and Unreasonable Anxiety

For whatever reason, I'm prone to feelings of intense anxiety these days. I lump anxious feelings into two basic categories: Reasonable and Unreasonable. Let me give you a couple of examples. That's probably the simplest way to explain.

Reasonable Anxiety: I am sick, but responsible to a fault. So when people start dumping projects on me at work because our department is short staffed or someone else has just given up, I get a little crazy. I start wondering if they'll ever take me seriously when I tell them I am swamped or if they'll just keep pushing me until I break. My weekends feel like they are shrinking. Forty-eight hours isn't enough time to recover from the week before. I keep my eyes out for other jobs, then worry about starting over.

Unreasonable Anxiety: I'm in public, there are things there, and I think I might die.

Am I a Chronic Target?

When I'm feeling particularly down about life, its past unpleasantries always bubble up to the surface of my brain. Like right now I'm thinking about that one time my brother saw my chronic illness as an opportunity to sell me nutrition supplements and convert me to veganism.

You see, he's healthy (except for that whole alcoholism thing, but whatever) and only eats a plant-based diet. So logically, I must be sick because I don't eat or live like he does. If I'd just spend hundreds of dollars on his magical pyramid scheme powder, I too could be bony as all get out and post pictures of asparagus and beets to my Instagram account twice a day!

Fortunately for me, my brother's M.O. is to completely stop doing anything that doesn't come easily. So when I told him I'd look into his magic powder if he'd send me some info, I was 99% confident he wouldn't bring it up again. And? So far, so good. It was five months ago today he said he'd send me a couple of links.

But my brother isn't the only one who's tried to profit from my poor health. A friend and fellow chronic who sells Avon-like substances from home (and knows that money is extremely tight for me) tried to sell me the newest flavor of hand lotion last week when I complained to a small selection of people on Facebook about weird bumps forming on the back of my hands. Many people assured me they get the same rash and are fine, but it was the subtle sales pitch that caused me to delete the post and abandon my Facebook account.

I literally have no one to tell my troubles too. People that don't get it just don't get it. And people who do get it -- friends in similar situations and support-group types -- make me feel worse about myself.