Items to keep by Bed

 Pain Medication and Water

“Pain relief and water. Sometimes I’ll wake up with such bad headaches from the fibro that I find it hard to even get out of bed. So I reach for my pain relief and my drink until it subsides,” wrote Victoria Checketts.

“Ibuprofen and water,” Christy Frey said. “Sometimes taking some before bed helps me not hurt as bad, but having water nearby is always helpful. Gotta hydrate!”

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Buy the pill organizer above for $9.97 from Amazon. Buy the water bottle above for $15.54 from Amazon.

2. Blood Pressure Monitor

“Pain relief topical, BP cuff, flashlight, cell phone charger, and my cane in case I’m dizzy when I stand up due to low BP. Sometimes it’s 80/40 or lower just lying down. Had to take real time pictures of my BP reading on the cuff to get the doctor to believe it,” explained Colleen Sullivan.

Buy the wrist blood pressure monitor above for $47.12 from Amazon.

3. Compression Gloves

“My compression gloves,” recommended Rachel L. Smith. “I sleep in them!”

Buy the compression gloves above for $21.95 from Amazon.

For more community recommendations, check out these 20 brands of compression wear.

4. Tablet Computers/E-readers

Theresa Callaghan wrote, “I keep my Kindle near at hand for those bad flare nights. Playing a game or reading a book helps a little to keep my mind from going off on one.”

“Painkillers, iPad to read or play relaxation music which helps me sleep, crutch for when back and hip pain is too bad to lift myself up,” added Gillian Chipchase.

Buy the Kindle E-reader above for $79.99 from Amazon. Buy the 9.7-in iPad above starting at $329 from Apple.

5. Lip Balm

“Water, sleeping mask, beanie hat, lip balm, phone and phone charger,” said Wendy Bader Engelbart. 

Deana Waller wrote, “Chapstick, kleenex, phone charger.”

“Bottle of water, chapstick, my phone and charger and meds,” added Tara Marancik.

Buy the Burt’s Bees lip balm above (2-pack) for £5.99 from Amazon UK.

6. Phone Charger

Justine Swayze recommended, “Pain relief, water, heating pad. Cell phone with charger and a remote to TV. Also some granola bars.”

“A phone charger and/or electronic charger. There are days where I need help and the only way I can get help is by asking via my phone,” explained Mackenzie Porter. “Sometimes I need medication or ice but am in so much pain I can’t get out of bed. I call someone I live with for help.”

Buy the 10-foot USB iPhone charger above for $15.99 from Amazon. Buy the 6.6-foot USB Android chargers above (2-pack) for $8.99 from Amazon.

7. Fuzzy Socks

Brody Louise said, “Loose warm socks and gloves.”

Buy the fuzzy microfiber socks above (7 pairs) for $15.99 from Amazon.

8. Heating Products

Laura Mugridge wrote, “Pain meds are a must-have as well as water! I also have a compress you can warm up by massaging it with your hands for when I have certain points of my body flare up to save me having to attempt to get out of bed and go downstairs to heat a heat pack!”

“Definitely not on my nightstand, but I can’t live without my heat blanket anymore. When my nerves are flaring up, it calms them down to a manageable level. Even when I’m not having a flare, the comfort it brings can’t be replaced,” said Jennifer B.

Buy the XL heating pad above for $34.99 from Amazon. Buy the HotHands toe warmers above (40-pair) for $32 from Amazon.

For more community recommendations, check out these 20 heating products and 14 portable heating products that can help relieve pain.

9. CBD Products

Sommer Czossek told us, “Hemp Bombs CBD pain freeze cream [featured above]. The cream feels like the icy part of IcyHot with the bonus of CBD. Also a heating pad!”

Buy the CBD pain rub above (4 0z.) for $39.99 from Hemp Bombs.

For more community recommendations, check out these 15 CBD products.

10. Essential Oils

“Meds, always keep a bottle of water to take meds with in case I can’t move, essential oils with diffuser,” said Julie Phillips.

Buy the lavender essential oil roll on above for $18.33 from doTERRA. Buy the peppermint essential oil roll on above for $18 from doTERRA.

11. Sleep Mask

Recommended by Wendy Bader Engelbart.

Buy the sleeping masks above (2-pack) for CDN$ 15.95 from Amazon Canada.

12. Smart Home Device

“Echo Dot or Google Home to control the lights and turn the fan on and off between cold and hot flashes without getting up, water, pain pills, melatonin or sleeping pills, and a book or tablet,” Lisa Hero said.

Buy the Echo Dot above for $29.99 from Amazon. Buy the Google Home above for $129 from Google.

For more community recommendations, check out these helpful smart home devices.

THE MIGHTY ASKS

What products do you keep on your nightstand to help manage fibromyalgia symptoms? Let us know in the comments below.

Songs Dealing with Anxiety

1. Overthinking

“Unwell” by Matchbox 20

“Complicated” by Avril Lavigne

2. Panic Attacks

“Numb” by Linkin Park

“Breaking Down” by Florence + the Machine

“Alone In a Room” by Asking Alexandria

3. Avoidance

“The World at Large” by Modest Mouse

“What Now” by Rihanna

“The Lonely” by Christina Perri

4. Tense Muscles or Physical Pain

“Breathin” by Ariana Grande

“Crawling” by Linkin Park

"Breathe Me" by Sia

5. Hypervigilance

“Where Is My Mind?” by The Pixies

“Viva La Vida” by Coldplay

6. Racing Thoughts

“Gasoline” by Halsey

“Inner Demons” by Julia Brennan

“Tell Me You Love Me” by Demi Lovato

7. Irrational Fear

“Holding Onto You” by twenty one pilots

“Never Gonna Give You Up” by Rick Astley

“Shake It Out” by Florence + the Machine

8. Worrying About the Worst-Case-Scenario

“Breaking The Habit” by Linkin Park

“Follow You” by Bring Me the Horizon

“I’m Not the Only One” by Sam Smith

9. Intrusive Thoughts

“Heavy” by Linkin Park feat. Kiiara

“Demons” by Imagine Dragons

“Help I’m Alive” by Metric

Fibro Suffers Need to Stop Doing These Things

16 Things Fibromyalgia Sufferers Need to Stop Doing

1. Stop putting your own needs on the back burner. – If you have any sort of chronic debilitating condition, you need to put your own needs first. Even if you are the healthiest person on the planet, you shouldn’t let your needs go to the back of the line. Since Fibro is most common among women, this is especially true as women seem to be trained that their needs should come last after their husband, children, church, jobs, volunteer effort and anything else that could possible come before them. It’s any wonder we give ourselves any time at all; sadly, too many of us don’t.
   You can’t help others until you’ve first taken care of your own needs.

   
   

   

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2. Stop spending time with the wrong people.- If someone is adding stress to your life, that stress is making you sick. Remove the stress by removing that person. You may not be able to completely remove them, but you can choose to avoid them when possible.
3. Stop holding grudges. – Holding a grudge is an unnecessary stress. It causes us to create negative thoughts about a person when we do think of them and to only focus on those negative thoughts, when we should be trying to find ways to focus on more positive things. Let go of the grudge. You’ll still think of the person on occasion, but when you do just shrug it off and replace the thought with a thought of someone you care about that makes you smile.
4. Stop trying to be everything to everyone. – The ability to say “No” is a highly under-rated one. Too often those of us with Fibromyalgia are likely to be unable to say “No”, feeling guilty when we can’t or won’t say “yes”. We can’t be everything to everyone, we can’t even be everything to ourselves and we don’t have to be.
5. Stop lying to yourself. – You are sick, admit it. You don’t feel great. Someone else asks and you answer with “I’m OK” but it’s not the truth. It’s not the truth when you say it to them and it’s certainly not the truth when you say it to yourself.
6. Stop wasting time explaining yourself to others. – Most people don’t care enough about you to care about your disease or disorder or why you can’t do what you can’t do. Keep it simple, just say “no” and move on. Don’t try to explain why you can’t do it, because they probably aren’t listening anyway.
7. Stop trying to hold on to the past. – While you may be able to find ways to improve your symptoms, you’ll likely never be 100% again. There will always be limits. Stop trying to re-attain the levels of life you had before your illness and realize that was then and this is now. Focus on what you CAN do instead of what you used to be able to do.
   Focus on what you CAN do instead of what you used to be able to do.

   
   
8. Stop berating yourself for old mistakes. – Guilt and blame are our constant friends. Stop beating yourself up over things you’ve done in the past (or things you wish you had done but didn’t). It’s in the past, let it go and move on. Again, focus on what you can do in the future.
9. Stop being jealous of others. – It’s so easy to be jealous of what others have or what others can do. Little do we realize that they have limitations, too. No one sees the true life of another, their abilities or disabilities, their limits. Don’t judge your life based on the “Jones”, real or imagined. Focus on what you have that is wonderful.
10. Stop complaining and feeling sorry for yourself. – Seriously! It’s ok to throw a pity party once in a while, but it should never last for more than 5 minutes and you should never invite friends.  Focus on the positives in life, there are many.
11. Stop overlooking the beauty of small moments. – How many times have we heard that we should “stop and smell the roses”. You don’t really appreciate those small things until you can’t do them anymore. So, take a few moments each day and really think about the small things you were able to enjoy. Write them down so you can look back on them later when you are contemplating that pity party.
    You don’t really appreciate the small things until you can’t do them anymore.

    
    
12. Stop trying to make things perfect. – They already are. Ok, maybe they aren’t perfect, maybe they can even be better than they are now. But the point is that you need to focus on reality instead of perfection. Take small steps to improve things and get closer to the idea of what you want your life to be like, and not constantly worrying about how far from perfect you still are.
13. Stop acting like everything is fine if it isn’t. – Everything is NOT OK, and it’s ok to tell the truth. When a real friend or someone who really cares about you asks how you are, be honest. Stop answering with “I’m fine” because you aren’t.
    It’s ok to admit that everything is not ok.

    
    
14. Stop worrying so much. – You feel like life is out of control, and it is so don’t worry about it. Let life be what it’s going to be. Control the things you can control and let the rest go. Constant worrying will only make you feel worse.
15. Stop focusing on what you don’t want to happen. – You don’t want to wake up tomorrow in a flare, so it’s all you think about and you end up keeping yourself from sleeping, which results in waking up in a flare. Sound familiar? Well, stop it. Instead of thinking “I don’t want…” think “I want….”. Focus on the good nights rest you know you WILL get and how great you know you will feel tomorrow because you made the right choices about the things that ARE in your control.
16. Stop being ungrateful. – Be grateful, every minute of every day. There is something wonderful to be grateful for. Say “Thank You” for the small things and mean it. Instead of getting upset that someone did something that you intended to do because it made you feel “useless” or like they thought you weren’t doing your part, be thankful that they just freed you up to do something else you wanted to do.

Pacing Yourself

They say the key to happiness, sustaining our lifestyle and managing pain is to simply pace ourselves. We have all been in a place in our lives where pacing our actions would benefit us. Whether it be because we had the flu, were pregnant, broke a leg or we were just too stressed and we needed a break!

I have heard this advice from the first day I left the doctor’s office with my diagnosis. “You have to learn to pace yourself.” My immediate thoughts were  “Yeah, I can do that, that’s easy, what else you got for me?” You can tell by my response that this concept was completely foreign to me.

I had never once been told to pace myself in any of the activities that I did. The American way is full throttle, competitive, balls to the wall, aggressive, take what is yours, work hard play hard, multitask, be a champion at everything. If you aren’t first you’re last. Hell, even my generation isn’t pacing themselves with tailgating parties. We are bingers. We need instant satisfaction. And more importantly we are creatures of total independence.

So there I was: 34 years old. Successful. Miss Independence who put herself through college and grad school by nothing less than hard work and suddenly, I was told to slow down.

My attitude: Turn down for what?

So I didn’t. Clearly the doctors, physical therapists and even those who had the same illness did not know what this fierce redhead could achieve. It’s easy… mind over matter… push push push. Those chores and grocery shopping weren’t going to do themselves. Money had to be made, traveling for work must be done, presentations had to be delivered and people had to be counseled. It was as simple as that. My life did not have any room to slow down… I didn’t even know how to pump the brakes.

And I crashed.  

My body began to rebel. My pain began to soar and my energy was non-existent. I was going through the motions because I truly believed there was no other way to live my life. It took numerous people and my persistent instincts to literally stop me in my tracks. When I crashed, I fell hard, knocking the wind out of my lungs and my legs no longer able to carry me to all of these “important” responsibilities that I had.

RESOURCES FROM SUSPENDED COFFEES

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It was then that I realized… I was important. My health was important.  Those responsibilities would fade and someone else was capable of doing those tasks. My body needed to heal. For the past 22 months I have been trying to figure out what that four-letter word means… Pace yourself. In the last six weeks during a battle between “how to heal” and “being a workhorse” I have determined that I am the worst when it comes to pacing myself. Since I am not an expert, I thought it would be fun to de-bunk those really unrealistic expectations we place on ourselves.

1. When you feel good, take advantage of the moment and get stuff done!

Terrible advice. I still do this. Every time I have a few moments of feeling good I dive headfirst into a project that is way too big. I usually end up sitting in the middle of a mess (literally) that now I cannot even clean up because I have pushed my body to the max. Projects this month have included organizing receipts (why!?), de-cluttering my bedroom, clipping coupons (seriously?) and trying to find plans and materials to build my chicken a coop. Who am I kidding? Sometimes, it is worth paying someone a few extra bucks. Teenagers in your neighborhood are always looking for side jobs, and think of it as helping today’s youth learn responsibility!

2. Volunteer to take on extra work, because honestly you could use the distraction.

Don’t bite off more than you can chew. Nobody is going to think less of you because you didn’t jump in and take on running the PTA, hosting a book club, working on the weekend! Usually after volunteering I am set way back from where I was when I started. This certainly only works as a distraction in theory. You can enjoy all of these things but you don’t have to be the ringleader! In fact, I guarantee you will enjoy them more if you aren’t in charge!

3. Nobody wants to hear you complain, so lie about how you really feel.

Not a smart move. Being honest is not complaining, you are simply expressing the truth and your reality. “I feel really great” will result in people being excited and then they start to suggest all sorts of plans that you might not be up for. Let’s go shopping! How about a three-hour movie! Or if you have the flu, you could end up sharing your germs. I recommend being honest and sincere and those around you will do their best to understand. Sure, those with who are healthy do not know what it means to be in chronic pain but they also don’t want you to lie about something that may affect your well-being. The same with being overwhelmed or stressed out — be honest and let others know how you are feeling.

4. If someone offers you help, turn down his or her offer politely. Nobody likes a mooch.

I just learned how to ask for help at 35 years old. I laugh when I hear toddlers say “I do it myself.”  You my friend, are not a toddler anymore, declaring your independence. We all know you can do it… but… that doesn’t mean you have to do it alone. I believe people want to help you, so let them! You know that realistically you can’t do it all, so why not share some of the load? And get this… we all know people feel pretty helpless when it comes to our illness. When they are able to pick up a prescription, push your wheelchair or grab some groceries for you, it makes them feel good as well. One of my very good friends told me years ago, “Kelly, let others help you! It is a gift they are trying to give you.” Nobody wants to have their gift turned down. And if it wasn’t a sincere offering on their part, then guess what? They won’t ask you again and you can move on!

5. You feel guilty for not doing “your share” of the household chores, so even though you are feeling pretty icky, you splurge all of your week’s energy on the doing the dishes.

Another one that always gets me! If we don’t already feel bad enough, we have to addguilt in there? Why do we do this to ourselves? If your loved one really loves and understands your condition/illness, then they probably don’t expect you to mop the floors every week. They live with you and see how life affects you everyday. Would you want your significant other to feel guilty about not washing dishes? I would never! And guess what, they are just dishes. It is just cleaning. You may even create more work for the person now that you have used up your energy stash for the week. If you are having trouble with this, try heading to couples counseling where a trained professional can help you and your partner to communicate to figure out what is realistic for you. If there is extra cash, hire a housecleaner twice a month. If cash is low, check out aid services through social services, which may be free to eligible community members, or perhaps a church would be eager to help.

The bottom line is that this isn’t a competition, although sometimes it may feel like it. This is unlike any other race you have run before, so it takes some time to figure out where you may struggle and how your body responds to the environment. Be kind to yourself and know you are doing the best you can. Our bodies are amazing and even throughout all of our chronic pain and illness… we are still here.  

Be patient with yourself. Listen to your body and your instincts and don’t let the false beliefs become your strategy of pacing.

Metaphors Describing Fibro

1. “I feel like [I’m] constantly wading through mud. Like my brain is clogged up. My limbs are heavy and every little action requires a great deal of effort. My muscles are tired and shaky. It’s just like pushing through a bog all the time.”

2. “It’s like having the flu all the time combined with feeling like someone physically beat you up. All the while being expected to function normally.”

3. “The brain fog is like the episodes of Charlie Brown when the adults talk. All you hear is the muffled megaphone when people talk. It gets all mixed up and makes no sense in your brain. When you talk to people on the phone you can’t think of the right words, you get your sentences all mixed up and you don’t make sense. People stare at you and you know they have no idea of what you are talking about.”

4. “It’s like every part of your body is bruised but [the bruises] are invisible, and sometimes you wish they were visible because then people might take your pain seriously.”

5. “It’s always wondering if anyone got the tag of that truck that keeps running you over and over and over. Day in and day out.”

6. “You’re a kite being tossed about by unseen forces floating far from reality on a tether that can break at any moment.”

7. “My muscles are so weak they feel as though I’m trying to walk while waist deep in tar with several cinderblocks tied to my legs and arms.”

8. “Stay awake for three days then fill your rain boots with broken glass. While wearing your broken glass rain boots, run laps while being shot with paintballs.”

9. “It’s like someone has a voodoo doll of you they just can’t leave alone.”

10. “Imagine your iPhone is broken. Every time you recharge it, it may show a full battery but in reality it’s always sitting at 30 percent. Your phone has many functions, each requiring a different amount of power. It’s up to you how you use your battery. If you stick to small activities like texting your battery will last longer. If you watch a video or play a game then you will run out quicker. If you run out of battery your phone will switch off completely and take longer to charge. Fibro is the same. Your body has a very limited supply of energy. You have to think carefully about what you do every day so you don’t run out of battery and shut down.”

If You Think Autistic People Are Not Paying Attention... We Are

11. “[Fibromyalgia is] like wearing a lead apron after pulling an all-nighter a few days after being rear-ended.”

12. “[It’s] like my skeleton is two sizes too big for the rest of me, and each bone has been twisted in place.”

13. “It’s that feeling you get when you’ve worked out too hard at the gym, but it’s all the time and all you have to do is move to get it.”

14. “Imagine the worst pain you have ever felt. Now make it 10 times more intense and across your whole body. Now imagine that feeling never goes away because there is no cure.”

15. “[It’s] like an elephant is sitting on you – you feel like you spend the whole day trying to push it off. It’s exhausting and doesn’t work!”

16. “It’s like I am a ship anchored down and all I can feel is the weight of the anchor while also feeling severe burns, stabbing, electric shocks and like I’ve been beaten and run over [by] a bus throughout my body.”

17. “It’s like you are always on spring break – you’re tired, you’re hungover, you haven’t drunk enough water, your body hurts everywhere and you’re nauseated all the time; and you keep getting older and less able to deal with the symptoms.”

18. “It is like being on a merry-go-round. You spin around and around, dizzy, aching from holding onto the horse for so long, gut clenched painfully, headache looming, and you can’t remember the word for stop!”

19. “It’s like wearing an X-ray lead apron all the time while having the flu and a sunburn all over. Every once in a while, someone comes up and pours hot water over you, or sticks you with pins. You’re tired all the time, but when you lay down to sleep you cannot get comfortable, and you don’t sleep well (or for long). And this repeats like ‘Groundhog Day’ every day.”

20. “It’s like riding the world’s best, scariest, loopy, full of all kinds of twist and turns rollercoaster over and over again without having to actually get on it.”

21. “Having fibromyalgia is like a balance beam. If you have too much rest for your left hand, you will fall off from lack of activity. If you have too much activity in your right hand, you will fall off the other side. You have to find the balance or you will fall off, and it’s really difficult to get back up.”

22. “[It’s] like waking up with the flu every day, but it never runs its course. And you have to live with it forever, and pretend it’s not there.”