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Saturday, January 01, 2000

Flare up Survival Guide (pasted from my retired fibro site)

I am currently experiencing a nasty flare up, and so I am more able to help in this post! This is my first in hopefully many posts about how to survive the dreaded flare-up!

(After the checklist, I will talk about flare-ups in general, as in their causes, etc.) Please don't read this all in one go, as it's way too long and I didn't write it all in one go!!! Pace yourself, or at least print it out and read it while lounging comfortably.

Disclaimed: I always say: consult your doctor before any changes in your fibro/cfs/etc plan, don't take my words as universal law. Be media savvy and check things out with your doc, Google it, WebMD it, talk with a nurse, pharmacist, etc!

The First and Major Golden Rule: Get in Control of your Flare-Up
The worst thing about flare-ups is that one can spiral lower and lower until you're bedridden for days and, virtually paralyzed. There is always some measure of control we can take, even if it is a small measure, it is important you grasp control asap.

One suggestion is to go through this checklist:
  1. Are you doing more than you should be doing? Go through your plans on a piece of paper, whiteboard, chalkboard, or in your head if your hands are incapable of writing; strike through anything that can be done a month from now, strike through anything that someone else can do or more importantly - should do, strike through any superfluous social or work events, etc.
  2. Is there anything over-stimulating you? Go through your five senses and try to dull them a bit by eliminating over-stimulating factors such as:
    1. Loud Sounds - if someone has their music too loud, tv too loud, etc, tell them that you need them to turn it down as much as possible. Leave the room if possible, and go to a quiet place. A library, a museum, anywhere quiet is also great if you are able to get there, and stay there comfortably! The best: soft foam ear plugs.
    2. Bright Lights - (or flashing lights) even though bright lights can raise serotonin levels, they can also over-stimulate during a flare-up, and it's important to size up whether they're contributing to your stress or not. Do go to a darker place, or at least with soft diffused lighting. Try not to go around fluorescent lights if you are prone to migraines, as that can also be over-stimulating (they flicker very quickly). The best light to have is a reading light. Don't watch the tv in the dark either, as that can make things worse too. Definitely stay away from strobe lights, but slow-changing colour lights are okay, they can actually be calming if they're not too bright.
    3. Debates and Fights- stay away from people that debate during a flare up! Tell them to write it down and you'll debate when you're feeling better. Petty fights will only make yourself worse, so nip any fights in the bud - walk away! Go to your bedroom and meditate, read a calming book, write in a journal, focus on your breathing. . . just no fighting. If someone thinks you're a sissy for leaving a fight, they're stupid, as a strong person would know that their health is more important than saving face.
    4. TV - Monitor your television and movie watching habits. If your heart is beating fast during your entertainment, it is not flare-up material. I suggest you watch comedies, romantic fluffy happy stuff, documentaries on cute animals (that doesn't involve killing), religious shows if you're religious, etc. Change the channel the moment something makes you angry, frustrated, gets your heart pumping fast, etc. You can always watch those kinds of shows when your flare up has gone. Try not to sit in the same position for too long, so if you're watching these shows, lay on the couch, then sit, then sit cross-legged, then lay on your other side, then lean all Romanesque-Fainting-Couch.. Change positions often. Your body will let you know.
    5. Over-Stimulating Food - some foods are definitely over-stimulating!! Spicy foods, very sour foods, very sweet foods, these can over stimulate. Try sticking to complex carbs like pastas, whole-wheat breads, etc. Good flare up fruits are: bananas, pears, watermelons, and strawberries. Stay away from citrus fruits and tomatoes. Good flare-up Veggies are broccoli, carrots, leafy greens, potatoes, turnips, celery, and cucumbers. If possible, take some Beano - as this will reduce gas pains.. and we all know how much fun fibro gas pain is.
    6. Smells - If someone's cleaning the bathroom with heavy chemicals, if someone's smoking, if someone's painting - etc, any strong smells, stay away. Don't wear perfume during this time. Aromatherapy is great, but stay away from anything that's strong enough to give you a headache, an asthma or allergy attack, etc.
    7. Thoughts - if you find yourself going through a negative thought-cycle, write it down, then take a 10 minute break. Come back to it and analyze it if you need to, but eliminate it from going through your head over and over again. The best way to kill a thought cycle is to write it down once, then replace it with something positive. Listening to calming music at a low-ampification is perfect for that replacing, as well as reading a book that interests you, or talking to a friend that knows what you're going through and won't spazz out and debate, fight, or stress you out in any moderate way. Mild stress, if tolerable and necessary during this time, is okay.
    8. As a good rule of thumb, write down anything that over-stimulates you, and during flare ups you can go through the list and eliminate these things one by one.
  3. Have you forgotten any pills? Withdrawal can greatly exacerbate flare-ups, especially opioids and serotonin pills... serotonin withdrawl (Paxil, Effexor, Zoloft, Prozac, etc) can make you dizzy, nauseas, sweaty, and it gives a feeling of general malaise. Opioid withdrawal (oxycodone, high levels of codeine, percocet, morphine, etc) feels jittery, you're shaky, panicky, sweaty, nauseas, you may have a feeling of foreboding, inexplicable sadness/depression, and overall pain. Other withdrawals may occur with other pills, but I have no personal experience with other pills, so I can't tell you what it feels like. Google it if you need to, call your pharmacy, your doctor, a registered nurse, etc.
  4. Are you wearing the right kind of clothes? Wear loose-fitting, soft clothing. Nothing rough, nothing tight. Jogging pants and a sweatshirt are the best!
  5. Ergonomic causes - get an ergonomic chair, mouse, keyboard, mouse pad, keyboard pad, etc. Get a lovely program called Workrave. Get it right now! It's free and it'll MAKE you take breaks. Next, make sure you're posture is good. Books on the Alexander technique will help. Make sure your shoes are not too old and out of shape. Repetitive movements are not good for Fibro, so if you can mix things up, take breaks, etc, do it often and do it consciously.
  6. What caused this flare up? Ask yourself what it is, then eliminate its cause forever (if it's something you don't have to be doing, like drinking alcohol), or until the flare-up is gone (if it's something you MUST do). Here is a checklist of what can cause a nasty flare-up:
    • Over-exerting yourself. Plan your workouts carefully, it's best to start with a personal trainer or even better- a physiotherapist. If you don't have the money for either, there are excellent books and websites out there on exercise and how not to hurt yourself. When my flare up is gone I will post about how to start your workout plan. Gradually build up your workout with baby steps, never jump right into a "normal" person's workout. We're normal, but we're also special, with special needs.
    • Drug and Alcohol Abuse. Smoking, drinking, street drugs- are ALL bad for fibromyalgia, any way you cut it. Marijuana has shown to be good for pain relief, yes, but street pot can have some nasty additives. If you can get government regulated cannabis, like this site then monitor your use carefully and make sure it's not adversely affecting your fibro. And no, smoking is not good for fibro. It's a stimulant, and when you're jonesing for a smoke, it creates a lot of stress hormones that can actually cause a flare-up. If you can't stop smoking, smoke light, and smoke little, and smoke on a schedule so you don't get withdrawal pains. Also if you have the money, get an air filtration system in your home or smoking room. Alcohol is never good for FMS/CFS. As much as we might like it to be, it's not. It is a depressant and interacts negatively with pretty much all the common FMS/CFS drugs, and it can most certainly cause a bad flare-up. Get to a treatment center if you're an alcoholic, but don't quit cold turkey, as that will most certainly give you a nasty flare-up. Slow but steady wins the race. Speed may give you some energy and make you feel normal, but it will make your FMS/CFS much worse in the long run, as will some metabolism-raising diet pills. You're doing an FMS/CFS Suicide if you're doing any street drug. If you're addicted to street drugs, then don't go cold-turkey, my friends, as that will hurt like hell and make you worse. Go to a treatment center and they will bring you down very slowly, make sure to tell them what meds you're on and that you have FMS/CFS and that you have to take it extra slow. Overall, be strong, you have FMS/CFS, you have survived this far, you can do anything. We're tough, very tough, cookies.
    • A recent fight with a loved one, friend, or stranger. Here's a mini checklist within this checklist.. lol.
      • Write down what happened in the fight, what emotions were provoked, what you think of the person, what you think of yourself because of this. Write down the issue of the fight.
      • Next, write down the root of the emotions. If you felt angry, why did you feel angry? Explore it, and you may find that this is a very growing experience. In making it meaningful, you will reduce your flare up's running time, as well as grow as a person and an FMS/CFS patient.
      • Next, write down your relationship with the person, and if it's a friend or family, write down six things you love about them.
      • Write a letter/email to the person, a short one (FMS/CFS flare-up isn't exactly conducive to long writing and concentration) - less than a half a page if possible - don't email/post it if you don't have to. And usually you don't have to. Don't leave these letter laying about if they're negative, the last thing you need if for the person to find it and fight with you again.
    • Someone is bullying you in your home, workplace, school, in cyberspace, on your street:
      • If it's an internet troll/bully or stalker, try ignoring them completely. Do not respond to them, do not mention them, do not let them know they hurt you. Try to eliminate how they can contact you: block their email address, block their IP from your guestbooks/etc by using Bravenet, and visit Cyberangels for help. Stay away from your computer, if possible, for a couple of days to a week. If this doesn't help, contact their internet service provider and file a formal complaint. It is important to have an IP tracker on your websites, as well as a program that lets you read the IP of anyone who emails you. If this doesn't work, change your email address, change your website, and use a different name/alias, use different modes/formats.
      • At home is most difficult, as you can't really ask anyone to help you with this. Try any ways to avoid this person. Let them know in a firm voice that you're honestly hurting due to their actions, not by yelling at them or crying at them or smiling while you say it. I can't give you more advice than that, but if a lover is hurting you enough to give you a flare-up more than once, after you tell them how much it hurts, then they are not the person for you. This is a form of abuse, both emotional and physical, as with Fibro and any stress-flare-up illness, slaps and stress cause the same physical reaction. If need be, involve a crisis counselor, marriage counselor, or even police.
      • Work Bullies. Yuck. There's always an a-hole at work hmm? Explain to them your situation once in a firm voice, that their stress is causing you physical/mental pain. Next time they do something, it's time to talk to either your boss, an at-work counselor, your union rep, etc. Find out what your rights are, there are many government sites, agencies, books, etc, in many countries dedicated to helping people like you. If none of this works, then you can go one of a few ways: talk to police and see what they can do, talk to a lawyer and see what they can do; see if you can remove yourself from the situation by asking for a new position for you, or try to find one of many at-home jobs you can do. None of this is easy, but if someone is flaring you up a lot, you need to remove the stressor as soon as possible. I really don't want to pull you out of work if you like it, so make it a LAST RESORT to pull out!!! Your enjoyment in life is very important.
      • School Bullies - are very tricky. They're a cross between an internet troll and a workplace bully. Usually confronting them makes them stronger, or can exacerbate the situation. It's important to find resources in your specific country, area, and school about school bullies. University Bullying is easier to control, as usually these bullies are more scared of getting a black spot on their records, so a first warning from a school official is (apparently, I can't say from personal experience, as I haven't been physically able to attend PS school for very long) usually enough. High school is no doubt the trickiest of the bullies, because they're so pumped with hormones. My tips here, for people with stress-worsened illnesses, is to try and get yourself transferred to another class if it gets too bad and school officials can't help you. Homes chooling is another option, or special needs schools or adult learning high schools sometimes accept younger (high school age) students in special situations. Adult high school is usually less populated with bullies. If the bullying is not so bad, and you can just ignore it... the bully will most often find a target that is more volatile. If you just take a mellow "whatever" attitude, they'll get bored with you. Beating them up is another (but stupid) option, lol, but I don't suggest it - I had several flare ups in high-school and grade school because I thought I had to teach bullies lessons. I'll post about Fibro/Pain related-Aggression later. This meant that I was absent from school a lot with horrible flare-ups. Fibro people: punching hurts like a broken fist for weeks. Ok, this isn't about me, all I want you to know is that it's a bad idea to physically fight bad, even if you have the emotion-fueled strength at that brief time. You might kick their butt because you're used to pain and know how to dish it out, but you may also get in trouble, suspended or expelled, or worse: have a nasty nasty flare up.
      • In ANY bully situation, here is the quick version: Iignore at first, then state in a calm but confident firm voice (no smile, no tears, no yelling) that you have an illness that makes verbal abuse into physical abuse, then, if that doesn't help: know your rights! Know your area's laws in the situation. Know the services available to you. Use the services available to you. And remember to ask for help from many sources, friends, family, volunteers, neighbors, police, abuse counselors, etc. It takes a village to raise a child or care for an FMS/CFS patient! You shouldn't have to suffer in silence, or suffer alone! Get others involved in the situation.
      • If you are being bullied about your FMS/CFS, this is sadly common, don't let them demean you! Don't let them belittle your illness! Don't let them convince you that you're stupid, a liar, weak, or anything - you have a REAL illness, with REAL pain, and REAL symptoms, that is considered internationally as a SERIOUS disability. These people are ignorant, and don't know how lucky they are not to have FMS/CFS or any other hidden serious illness. And remember: they will get their Karma/Comeuppace!!!! They are not as strong as you and feel the need to pick on sick people to make themselves feel better - picture them making fun of more visually obviously sick people (cancer patients, burn victims, children with developmental disorders, elderly people with obvious arthritis, people with Parkinson's, AIDS patients, etc) and see how absolutely horrible and ridiculous it would be. THAT is what they're doing to YOU, they are being HORRIBLE and RIDICULOUS. Don't sink to their level, and above all: do not believe them! If you feel unsure about your illness, it is normal for CFS/FMS/invisible disabilities patients, very very very normal - because so many people have told us it's in our heads. It's been brainwashed so many times that sometimes we believe it, we think we're crazy, lazy, or mistaken somehow... or even the cause of it. You must get confident in your illness, get diagnosed and then remember: a trained medical doctor, who studied this illness in medical school, says you have it. What's a moron bully to know? They're stupid enough to bully, as bullying people never got anyone anywhere. Encouragement and probing conversation is better in its stead, so if someone doubts your illness, they should ask you about it, get educated on it, before they make their decision. However, bullies usually just look at someone and make their 'diagnosis', they are usually very misinformed, and those who claim to be informed are still idiots for bullying.. as anyone who knows anything about FMS/CFS: it is invisible, it is different from minute to minute, and bullying makes it worse. That is, until you know how to erase the bullies from your world.
    • A big weather change. Ok, there's nothing you can do about this, but you can pay more attention to your local weather and plan for possible flare ups.
    • A death, divorce, separation. There's not much you can do about this sadly, but what you can do is take control of the steps of grieving. I'll post about it later, but there are lots of sites online that are very helpful with grieving. If you're going through a divorce, you can ask someone to take care of legalities that week/month. And yes, the death of a pet, even a goldfish, can cause a flare-up. Don't let people tell you it's stupid to mourn a goldfish. If you love something and it is taken away from you, it can cause a flare-up. We're very fragile, which is why it's so important to grasp the reigns of control and make ourselves stronger through education, behavioral conditioning, and attitude/perception alteration/modification.
    • Moving House. Try to get more people (friends, loved ones, community volunteers) involved in the move, explain to them what a flare-up is, and even send them to sites, lend them books, etc, to show them how seriously you need their help.
    • A cold, flu, any kind of virus can cause a flare up. However, some people with FMS/CFS say that it makes their symptoms lesson, but makes the cold worse. This can sometimes be a relief for FMS/CFS patients, and some people are now saying it's probably because people "take it easy" consciously during colds/flus, and because of certain drugs one can take during this time. You'll hear a lot about those drugs during your research. But don't be fooled, colds and flus (etc) can make symptoms a lot worse if you don't fall into this category! Avoid colds/flus! How? Wash your hands often, never touch your eyes, use hand sanitizer, take multivitamins, stay away from people who have colds/flus if possible, wear a particulate mask around sickies, avoid going to free clinics during cold/flu season if possible (and if not, hand sanitizers and particulate masks are excellent.. Okay you might look like Michael Jackson, but you won't get a cold/flu, wash your hands often and reapply the sanitizer). Just Google it, find out how you can avoid/cold flus. I get my flu shot, which can help.. but it does hurt because usually they put it in a fibro point.. it's like they unconsciously know where it hurts the most.. lol. And it might make you sick for a week or so with aches and pains. But hey, I rarely get flus and colds since I've been getting it, and I deem it well worth the ouch.
    • Exam/Test Anxiety. For this you must have a conversation with your teacher/test master, and see if you can meet them halfway with your illness. Perhaps they can arrange for more time, or they can administer the test in parts, etc.
    • Many other things can cause flare ups. Anything that causes you stress can cause it. Sometimes, we can't figure out what causes them. Sometimes it can be a single sentence someone says wrong, and you take it too seriously or to heart. One major way we can avoid flare-ups is to learn the fine art of calm. I have meditation articles on another blog at My Tarot, Meditation, Astrology, etc page, where I have a series (which is taking a long time since I do have FMS) about leaning to meditate (never hurry yourself in non-essential tasks). And it's free. I am doing it as I learn more and more about meditation, as I have been doing Yoga (the philosophy, and gentle exercise) for almost ten years now, and so I want to share what I have learned and what I am learning. Pop by if you want, but it really helps to meditate any way you can get it.
  7. Try to take more rest periods, that is, nap and rest more during flare ups. Unless you are doing sleep-behavior conditioning, therefore you'll have to sleep only when your schedule allows. Napping can help build your strength back up, but it can also reduce stress and keep you from being further bothered by what's bothering you. If you can't sleep, then lay down and try progressive muscle relaxation. Google it. I will post about it on this blog later, but it's important for every FMS patient and CFS patient to know.
  8. Practice slow deep breathing, breathing in from your gut, not the top of your chest. Breathe in for 4 seconds, breathe out for 8.
I will add more to this survival guide when I find more items to put on the list. Please feel free to leave a tip or helpful routine of things to do.

Flare-Up Management Links:

  • Managing my Fibromyalgia's Flare-up Management is what first inspired me to write this post!

  • Fibromyalgia Support's Flare Up Management

  • Fibromyalgia: Mainting a Positive Attitude is great, ten tips on how to stay positive, the most important quality to have if you have FMS/CFS. This article can be helpful for many chronic illnesses, not just FMS.
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