Chronic Pain: Flare Survival Kit

Chronic Pain: Flare Survival Kit

By Liza Zoellick.

Anyone who has dealt with chronic pain and illness has had a flare at one time or other. It might last a day or two weeks but we’ve all had this experience. You may have been feeling great the day before or you know that a particular stressor set you off. Flare triggers could be any of the following or nothing at all, as we are all different.

Flare Triggers:

  • Physical stress
  • Psychological stress
  • Travel
  • Schedule changes
  • Interrupted sleep
  • Weather changes
  • Over taxing yourself
  • Medication change
  • Common illness

The Flare Kit: Every Spoonies Must Have

Liza Zoellick

When you are in the midst of a flare it is likely you are going to be bed ridden or maybe on a comfy couch with the likelihood of moving between 0-5%. Because of this, every spoonie is in great need of a flare kit. Small kit or large kit depends on what you need; how fancy the container which keeps your supplies is personal preference, but keep one you must. It will have all the things you need to survive a long stretch in bed. Some of these supplies can’t actually fit in the box; they are ideas to have- things you may consider to keep nearby or ways to make your life easier. But go ahead and make a box! I love DIY projects.

  1. Netflix, Hulu, Crunchy Roll: because sometimes you need to devour an entire season of The Crown, or Full Metal Alchemist to get through the pain. No judging!
  2. Snacks: Healthy or Indulgent: No joke. From Super Sour Gummy Worms to Veggie Sticks, because sometimes you just need snacks.
  3. Heating pad, Blanket and Ice pack: sometimes ice and heat simultaneously.
  4. Pjs or other Comfy, lounging clothing: I live in leggings and joggers.
  5. Fuzzy socks: ‘Nuff said!
  6. Cell phone, Lap top, Kindle, Tablet: Because this is how us Spoonies, reach out and touch humanity.
  7. Soft blanket: This is different than the heated blanket; literally like a security thing. There is no shame in it! I love my soft, grey blanket.
  8. Essential oils, topical cream analgesic: Two Old Goats, Tiger Balm…these are my friends. And essential oils make me happy. 10mil carrier oil, I like fractionated coconut oil, 2 drops Rose Absolute, 2 drops Ylang Ylang. Massage this into skin during a flare. It helps with relaxation and mental clarity.
  9. Friend to talk to/support system: Don’t even think for one moment you can do this all on your own and not at the very minimum need someone to just talk to.
  10. Skype/Discord other chat apps: These are free and safe and if you meet people on Face Book boards or other support forums you can always connect via Skype or Discord and not have to give out personal info.
  11. Crockpot: Yes lovelies! You can throw everything in there and forget about it and have a decent meal and not do take out.
  12. Medicine on standby: That means if you are in bed with no intentions of leaving that space, make sure to have all your meds handy right there on your night stand.]
  13. Pillows: You can never have enough pillows. The more pillows the merrier! I have five on my bed at any given time, all for me. Some are softer, some more firm. It just depends on what I need to get comfortable.
  14. Coloring books, pencils and markers/other art-n-crafts: These are quiet, relaxing ways to pass the time and therapeutic. Art is therapeutic.
  15. Cross-word puzzles and word-searches: Because you need to keep sharp!
  16. Tea (herbal): Having a cuppa is very relaxing. You can pick blends that aid in sleep and relaxation too.
  17. Easy meals you can microwave: Give yourself a break let the Crockpot rest and if you are feeling so yucky that even food isn’t appealing, microwave soup is awesome.
  18. Pets and stuffed animals: They are therapeutic as well. My kitty keeps me company and so do my dogs.
  19. Symptom Tracker Journal: If you do not know what triggers flares, keep a journal to jot down symptoms when you are in a flare and also whatever you did the previous day. Sometimes you can figure it out this way.
  20. Post-it Notes: I have these everywhere. Brain fog. That’s all I can say.
  21. Memory Book: If post-it notes aren’t as helpful, a memory book might. You can write down everything and anything you might forget, in however a fashion you like. An example of an entry: Putting the $25 for Sarah’s field trip in bottom drawer of dresser. That way if you can’t remember, you can look in the book. Just…uhm…remember to write it down.
  22. Freezer meals: If you know you flare up at least once a month, keep some freezer meals on hand, making them on days you feel good or enlisting some help to do it, so you can throw into a crock pot or heat in oven or microwave. If your flares are joyful surprises, like mine sometimes are, keep some money in a jar for unexpected “take-out” days or, still prepare some freezer meals to keep on hand.

I hope this list gives you some ideas. Remember, this is all about you and what you need and what will make you more comfortable and make your life easier. So, make your kit as big or small as you want, fill it up with all or nothing from this list, just make it yours and make it something that will make you smile.

Editor’s Note: If you have some personal “tricks” that help you manage your pain flares—please share in our comments section.

Liza is a   chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness for eight months now on her blog: http://lovekarmafood.com. She is a contributor to the National Pain Report.

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Authored by: Liza Zoellick

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Kat

I also have a playlist on Spotify that helps distract/relax – esp for those nights when I am still awake at 3am in pain.

Liza

Thank you to everyone again for reading and continuing to support me here and on my blog. I really appreciate it. I would like to reply to each and every one of you but I have been trying to deal with my own flare that is not budging. I just started Remicade and am hoping for some positive results, even on just the RA front so I might have some relief. Lots of love and hopeful wishes that everyone has less pain in their lives.

Marea Campagna

Thank you Liza for this invaluable list. I almost laughed because on the other side of the double recliner couch where I spend a great deal of my life, are my daily esentials, many of the same items you listed: self-help books, my bible, magazines, cards to send to people, blankets, a small pillow, etc. On the table to my right, I have all my writing needs, note paper, white out, magnifiers, paper clips, scissors, reading glasses, drinks, medicine, snacks, kleenexs, journal, datebook, fan….. I felt our house was the only house which had such items kept out. Sometimes I receive a little ridicule for my “pile.” If I clean it, it would just grow back. It is needed and necessary for people that are stationary for long periods to live where they are, and have such items at an arm’s reach.
Most importantly, my faithful Chihuahua Luci has been with me on this recliner every minute of every day, sleeping between my legs, never leaving my side. I feel a pet is a must if you experience pain. Her unconditional love helps me to keep going.
Thank you for letting me know I am not living alone in my lifestyle, that there are many in the same boat. : )

Leslie Meadows

Thanks Liza, I moved from Conroe to be with the grandkids here in Florida.It’s great on the days I can get off the recliner but now those are few & far between.I knew I would be getting worse yr. to yr. but it’s still heart breaking to think I will soon be unable to walk with them.Yes,they can push my wheelchair but who wants to do that for NiNi? Your lists are perfect! I have a very loving & smart hubby,he can go shopping & get exactly what I want & or need ,hopefully all of us have someone we can call to come over & or help us out.If not drop your pride ,ego & call that friend you’ve been meaning to.If you are a spoony you might be closing yourself off to people.Not a healthy way to cope with things try smiling I have to remember how too after a week in bed.At least the holidays are behind us,I almost missed Christmas dinner, in the midst of a painful week I took 2 doses to be able to see all my family,had to be there.
Ya’ll have a great month bike week is starting here so I’ll be wearing my hearing protection😎

Jim Moulton

Good stuff, need lots of spoons today.

Kelly E

A spoonie is a chronically ill and chronic pain patient. There’s something called “spoon theory”. You only have so many sooons a day to use. The spoons represent your energy. It’s like batteries in a human. How you use your spoons can affect how tired or fatigued you get. My brother in law put it best to my niece and nephew. Ina video game you have a health bar. As you play it automatically regenerates. For the chronically ill people it only recharges with rest and sleep.
I have hEDS which is a genetic connective tissue disorder. That’s where I learned about spoon theory. I also have chronic and intractable pain. This was a great article and I do many of the things the author does. We all have our tips and tricks that help us get by everyday. Gentle hugs and lots of spoons to everyone.

Janíce

Thanks for the terrific idea! Arts and crafty projects help me relax and keep me going, but sometimes getting supplies together and come up with ideas can alone be tiring. I or a friend make up mini-art kits so I can just sit and do with low effort.

Stephanie Scarbrough

A spoonie is someone with chronic illness or pain. It comes from “The Spoon Theory” by Christine Miserando. Great read, here’s the link! So much thanks for a fantastic article, much love to my fellow spoonies!! 💜

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

annette finch

tip for flare up

annette finch

“permit” ourselves the time to rest. I often feel guilty when doing nothing, HOWEVER, I know rest will settle the flare up quicker. There is a certain level of pain where I need to TRY and put the pain in the background and then there is the level of pain where even breathing hurts, and on those days rest is the best

JoDawn

Excellent list!
The only thing I would add is gentle hugs!

If you live alone, a fur baby is almost required! The touch of another living creature will help you control mental stress.

But if you live with a loved one, don’t be hesitant to ask for hugs! You need some just to survive. You need more to thrive.

Renee

Like the rest of you my pain is so high since my pain medications have been lowered. There is nothing that my pain doctors can do, it’s either there jobs or me, what has happened to us in the greatest country in the world. My husband says that it is terrible of our country to treat us as addicts because we suffer from a savage disease such as chronic pain. He said everyone is an addict of some sort, then he goes on to say the normal kind, like drug, alcohol, gambling, sex, and so on. But then he says then their are the over eaters, under eaters, women abusers, child abusers, animals, themselves, each other, hyperchrondreacts, phobia people, the many manias, environment, other races, other countries and etc….The bottom line he says is human are abusers/addicts of some sort. So to pick on us with pain contracts, being lowered or dropped of our life saving medications because they are worried about us, come on, If our country is to treat everyone equally then everybody needs to sign a contract of some sort and have people who don’t know or understand their problem tell them what to do. But to get back into our flare up tool box, I use internet slots, not the betting real money kind, but the free games slots. It is mindless but if you win some points it for me distracts me a little. But I wanted other people like me with so much pain to look up (Wild Lettuce) it is suppose to help with pain. I asked my pain doctor and they said they have not heard of it and it is not against my pain contract so that I have the green light to try it. I hope it helps us so that we have have something in our tool box to ease our pain, but wait, if it helps, then like kratom tea, the FDA will stop us from that too. I watched a lot of my doctor’s pain patients come out of her office in tears because we have all been told to try pot, then those of us that got relief are now told that if you want to keep taking it, then it is either it or pain medications but not both, WHAT? I am so glad that I didn’t use it only to have to loose another way to find relief from chronic pain. Have any of you noticed that when it comes to finding something out there to ease our pain, then someone, something comes in and says NO YOU CAN’T USE IT! Just stop thinking about your pain and get to living! What?????? How can I get to living when my pain is screaming in my head and body that I can’t think or feel anything other then the PAIN! Sorry about going off on you all.

T. S.

Some articles are really good. However, I don’t see the point unless we are replied to. There’s no way to get a response from anyone. What’s the point.

Maureen M.

Thank you Liza! You hit the nail on the head for us CP ‘pros’.
Minus having a furry friend anymore (I just can’t care for them well anymore) I have it all!
Also, I keep a basket next to me on my bed with my glasses, remote, tissues, nail file :), notebook, pen etc since sometimes it is even difficult to reach toward my night table for things. I keep my IPad on my bed at all times…using is my fav pastime…especially when I am in a flare and need to pass time until I can take my next med. I keep a stool next to my bed to help support me with getting in/out of bed. I’m in bed in a flare now, have essential oils steaming in my diffuser,
I’m wrapped up in my soothing, fav fleece blanket and fuzzy socks! 🙂
I’m in this flare simply because yesterday I decided to step outside of my box and cook up an anti-inflammatory meal that took too long to do 🙁

@ Virginia…your post did come through. And the Bible is great suggestion! I tend to read it on my iPad. God is good and gives me strength to endure another day in Pain. Without HIM…I could not do it.
FYI… Google Spoonies. A woman with pain came up with the concept of using limited amounts of activity/energy to avoid flares and/or fatigue, hypothetically using a few ‘spoons of energy’ in order to help yourself be conscious of what you do each day that may make you worse. Each day you decide ‘how many spoonsful of energy can I use today?’ and stick to it. Folks who practice it are called ‘spoonies’ 🙂

I recommend a device charger and or a battery recharging “brick” too!

Terry

Thanks for such a detailed list. Sometimes it’s really hard to think straight. It would be a good idea to copy your list, even if just bullet points, as a reminder if your flare up catches you off guard.

Dr. Mark W. Helfand

I agree with Liza in concept. Being a 63 y/o male, my needs are a little different. Coloring books and fuzzy socks aren’t for me. 😉 I have CRPS and spend most of my time in bed anyway. Moving always causes me pain. I have found a few things that might help everyone. First, I purchased a 1.6 cc mini fridge to keep my medicine and iced tea in. I use lozenges for pain and they need to be kept cold. I keep
the fridge next to my bed so when I need my pain meds or get thirsty, I don’t have to go to the kitchen. Next, I keep a large plastic tray on my bed. I keep all the small things I need in it instead of all over my bed. My eyeglasses, remotes, box of tissues, etc. When I need something, I have one place to look instead of searching all over my bed. I can also move everything at once when changing my bed sheets. Finally, and both the most helpful and the most expensive is a front door camera. There are many different brands with varying abilities. With every model you can see who is at your front door without getting out of bed. I can also talk to the person to see what they want. The last thing you want to do when you’re in pain is to get out of bed to answer the door for someone selling replacement windows. I can also unlock my front door to let a friend in. It is worth every penny. I should mention that I live alone. My wife passed away many years ago and we didn’t have children. If you’re lucky enough to have help, then the fridge and door camera aren’t as necessary. I hope my “things” are helpful to someone else.

Bradley Hannah

My quality of life is going away, I have chronic pain, I have been cut back so far on pain drugs that they are not effective. I have asked for a increase for four years. I just had knee surgery without much pain drugs so I felt everything when I woke up.Doctors are afraid, I wont have any more surgery because of the reluctance to prescribe. I have been on opioids for almost 20 years. Now what do I do, now that walking is so painful? I been screwed!

B. Gould

Awesome article! I spend 98 of my time in bed and I know my furry friends really make a difference. This medication reduction is really bad though. I used to lift hand weights and sit on the porch and read but I am having trouble concentrating with all this pain and even some of the pain I forgot about. Also, I found shopping online really helps and wearing all my new clothes which I really haven’t had since before my chronic issues began Is the best thing I have done. We all need distractions but I have to say it is a great deal of work to get through the pain. I really want this nightmare to stop and as most if not all of you know it is so frightening. How much pain can we take..I use my Louise Hay book of Affirmations and I try very hard to be present. I also try very hard to make a to do list for my day and if I can tackle 2, 3 or 4 out of my 5 items I have made great success and it helps to have the distraction and I feel more involved with my family. But, as a Chronic Pain Patient we need help and I pray that our Government can compromise and separate Illegal use of street drugs, etc. with the Legal use of Pain Medication Prescribed by our Doctors. I am waiting and praying for help!

David W Cole

Great article Liza, my favorite tool is my phone, I have intractable pain I live in pain 24/7, however my pain can change from pain level 3 to 7 in a matter of minutes, that’s when things get nasty. That’s when I jump on my phone and I start educating anti-opiate zealots about the difference between intractable, chronic and acute pain, the difference between dependence and addiction or read the stories of other pain patients. It’s not long before you know there are people out there that’s got it a lot worse than you, it just breaks my heart and makes me so angry that I just started letting them have it. The biggest problem is this opioid Hysteria, and the new guidelines that were supposed to be for primary care physicians that has now I become the law of the land. They’ve taken 2 much of my pain medication out of my tool box. I don’t know how it works but seems to calm me down when I’m writing Senators, congressman or telling my story to a magazine. I think all pain patients would be better off to remember stress, anxiety will make your pain worse, you have to find a way to control that, and that’s not easy. We must remember inflammation is not our friend, so the first thing I when I get up, because I happen to believe NSAID’s will kill you faster than opiates, is I take boswellia, turmeric with black pepper fruit, vitamin D, E, and fish oil. I also take a nerve support formula with high levels of vitamin B 12, as Methylcobalamin, it’s important to get that kind of B12, it also has B1Thiamin, B 2 Riboflavin, B 6 Pyridoxine HCI, folic acid, vitamin D & K, Acetyl L-Carnitine, Turmeric, R-Alpha Lipoic Acid. I would recommend this nerve formula 2 anyone that has nerve pain. You don’t even have to take the extra boswellia or turmeric, I just do it because I’ve got a bone on bone arthritic shoulder that it helps with. Anyway if you’d like to try it out you can find it at http://www.RealHealthProducts.com this is the best product I found and I’ve went through 5 of them. Remember to take the fish oil to. Remember
you can feel your toolbox up with you want, and if you need to make time for yourself, you have to do it. Best wishes to all my fellow pain Warriors.

Pray. Simply pray to God above that he will stop this Injustice that has taken place. Pray for miracles, for He is still in miracle business. With God ALL things ARE possible. Pray with faith. Pray for those that have done this to us, we are supposed to pray for our enemies. If all of your family and friends have left you because they either deem you a drug addict, lazy, or you’re no longer able to go have fun due to your pain, start a journal. Need not be something fancy, just a spiral notebook will do. If you have no pets to comfort you and you do not wish to hold a stuffed animal, then hold your Bible just as tightly as you possibly can. If you don’t have the strength to do the Crock-Pot thing, by all means keep milk, peanut butter and bread on hand. That will help you keep your strength up. Last but not least, even though no one’s around to talk to you or give you support…don’t ever, ever forget you’re not in this alone…

Stephanie

Great list, but what’s a “spoonie?”

Virginia Null

You forgot my most favorite thing: the Word of God! The Bible! Jesus is our Savior, and the only One who will really help us in the end. I truly hope you know this?
My question is; what is a spoonie?
As I sit here on my bed with my stack of dark chocolate/sea salt bars, popcorn, and plenty of water, my caregiver kitty; Sox, and Bible, my favorite author; Oswald Chambers (can no longer write, nor color these days),I cannot for the life of me think of anything else to add to your list of boxed needs for our down time.
God bless you and thank you for all your help!
Don’t know if my message sent because you have all this gobblygook letters in a box to figure out so I’m not a robot and more and more keep coming up….