Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’. This ties into the point of the trashcan / umbrella diagnosis.
Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.
Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.
Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.
While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them.
My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.
What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..
Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.
Every morning is a tough morning.
I can sleep all day and still feel like I just ran a marathon.
If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
When i’m tired, let me sleep.
Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
Yes, diet matters, but in flare mode, all bets are off.
Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
I can get moody. You would be too if you were in pain all the time, be patient with me.
Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
“You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.
I figure today is the perfect day to discuss this topic, as today July 24 is Self-Care Day,!
What is Self-Care?
Self-care, as defined by the World Health Organization, as what a person does for one’s self to establish and maintain health and to prevent and deal with illness. This includes hygiene, nutrition, lifestyle & activities, environmental factotrs, sociao-ecpnomic factors and self-medication. This includes physical as well as mental & emotional health.
So, basically, taking care of one’s self. & showing yourself some love.
But this is something us with chronic illnesses have a problems doing. We tend not to prioritize ourselves in the grand scheme of things. It is something we need to do to help ourselve help get us better. Not healed, but better.. I guess a more appropriate word would be improved (that is another blog post in & of itself)
So what to do to help ones self? There are a ton of things you could do. Here is a by no means exhaustive list of thngs to help improve your personal health, or self-care. A search on Google will give you additional ideas as well as suggestions for 30 days of self-care, a cheat sheet or a self-care checklist. I’m sure the list below includes information from these sources.
Self-Care Ideas
Take a walk
Meditate
Call a friend
Go out for a coffee/drink with a friend
Read
Warm bath, or hot tub
Yoga
Tale a nap
Dance or just listen to music
Sing
Keep hydrated
Sexual Acrivity
Compliment someone else (You’d be surprised at how well this can make you feel)
Plan kindness activities
Colour.. or Paint.. Do something creative
Knit, sew, crochet, macrame, needlepoint. Make something
Mani/pedi
Get a massage
Hug your kids, furbabies, nieces, nephews, grandkids
Stretch
Watch something funny – Tv show, movie, theatre
Plan a dream vaction
Plan what you would do if you won $25million
Take a trip to the salon to get your hair done
Get dressed up just to get dressed up.. If you look good, you feel good
Journal
Declutter a space on your home
Say or find posotive affeirmations. My mirror says “You’re Beautiful”. Who am I to argue wiht the mirror mirror on the wall?? 😉
Volunteer
Try something new
Ask for help!
Unplug. (This one is difficult for me)
Plan & eat a nutrional, healthy and delicious meal, bonus if its a new recipie
Hang with a friend
Watch funny videos.. I like Jeff Dunhan & Fliffy
Exercise
Eat dessert, but not every day!
Start a new, good habit
Create a bucket list.. A fanaticl one or a realisitic one, your choice
Pop Bubble Wrap!
Watch cute videos online – I love puppy videos, and the kitten ar cute too.. 🙂
Go for a drive
Deep slow breathing
Play with or cuddle with your pet
Learn a new skill
Practice positive selft-talk
Walk outside, feel the grass under your feet. (watch for glass if not in your backyard)
Forgive. Not for them, for you. it help you heal
Talk with someone, even a therapist or councillor
Remove negative people or groups from your social media
Family activity day
Make a list of what you are grateful for. Start with being alive, having shelter, and a full belly.. Go from there.
Sit in front of the campfire – Make smores, spider dogs, or mountain pies
Learn something new
Play a sport you enjoy, or watch it professionally
So.. Lots of choices as I said, There are alot of other options out there. Remember this activitiy, or lack threeof, is to make you feel better.
My Go To’s:
Meditate
Slow, deep, easy breathing – helps me sleep
Read
Drive – I love to drive.
Muisc – Listen, sing or dance to.
Volunteer (I’ve been a Scouter with Scouts Canada in some form or another for almost 20 years. – COVID’s made it a challenge)
Mani/Pedi – by myself or at a salon
Hair Salon – Love the head massage when she washes my hair
Sitting by the campfire, preferably with friends or the Cubs with approapriate libations & snacks
Massage therapy
Exercise, when viable.. Walks, jogs, Yoga Aqua-fit, arriba dance, etc.. dependng on pain & energy levels
Hot Tub. I prefer bewtween 99-102.. Can’t do hotter. 😦
Huggs 🙂 From wherever safely possible
Sex, with or without a partner
Go for a drive
Compliment somone – their hair, nails, clothing, shoes, etc..
Forgive
Colour and/or paint
Knots. Not a typical activity, but i like the challenge, plus im a Scouter, go figure.
Socialization with friends & family
Play or Cuddle with Lilly, my dog. ( See: “She Saved Me” post for more info on her.)
Call someone or at least check in for only that purpose, to see how they are.
Think or plan how i\I’d spend lottery winnings
& the obvious – Journalling. My blog, my instagram & facebook pages help me express myself.
What to Avoid:
Excessive or inaprropriate drinking or drug use
Maintaining toxic relationships
Argue excessively
Ovedoing an exercise routine
Stressful situations
Gambling
High-risk behaviours
Voilence to one’s self or others
Other self-destructive behaviours
Self-isolation (except as needed for COVID, but even then you can zoom or call or text) aka Social suicide
I’ve spoken to many people in the fibro community about this & it seems I’m not the only one deteriorating.. With over 3 months since many of our non-western medical treatments.. So, for most of us it’s only medications that we have access to, and if we are lucky, pain injections..
We are finding out how much our treatments help us.. Massage Therapy, Physiotherapy, Acupuncture, Osteopathy, Chiropractic Care.. For some it’s the ability to exercise when all pools and gyms have closed including even private facilities. I’m sure there are other possible treatments that I haven’t mentioned – remind me of what they are!!
Personally, I’ve lost physiotherapy & osteopathy, massage therapy, aquafit with other exercise at the gym, and the hot tub – God, I miss the hot tub.
But what I am missing most? Socialization..I’m still in contact with friends, and doing my scouting thing, but it’s not the same. I’ve only seen my best friend once through the glass door & subsequently only on Zoom. I haven’t heard from some of my Cub Scouts in months since we went virtual. There are three that despite attempts for contact, that we have not heard hide nor hair of.
Note: the above was originally written in mid-June before we started to re-open in my area. In the last week I have finally had social distance visits with my 2 best friends. I was glad to see them both.
I’ve also seen my RMT, I see my Osteopath next week. And even have my hair appointment with my Mom on Friday.
Now, some pools have opened and the splash pads. Unfortunately, some community & all private gyms like mine are not open.
This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.
About Fibromyalgia
My Need for Massage Therapy– If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My Good Days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My Uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. (Keep an eye out for the reposting of the topic “My Fibro is Not Her Fibro”)
My Weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My body’s metabolism is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
My Stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My Depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My Sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, textures, odors, food, etc.. FMS has been described as the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.
My Intolerance – I can’t stand heat, either. Or humidity. If I am a man, I may sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My Clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My Forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My Fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My Pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.
Fibromyalgia Pain at Night – 10 Tips for Better Sleep
WebMD Feature By Jeanie Lerche Davis
Do you toss and turn at night because of fibromyalgia pain or discomfort?
“People with fibromyalgia tend to have very disturbed sleep,” says Doris Cope, MD, director of Pain Management at the University of Pittsburgh School of Medicine. “Even if they sleep 10 hours a night, they still feel fatigued, don’t feel rested.”
Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles don’t heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued.
The result: The body can’t recuperate from the day’s stresses — all of which overwhelms the system, creating a great sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of fibromyalgia.
Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Smoothing out those sleep problems — and helping people get the deep sleep their bodies need — helps fibromyalgia pain improve significantly, research shows.
Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally.
Tips to Get Better Sleep With Fibromyalgia
Creating a comfort zone at home is key to better sleep, whether you have fibromyalgia or not. It’s all about easing into bedtime feeling relaxed — and staying relaxed so you sleep through the night.
These 10 tips can help people sleep better:
* Enjoy a soothing (warm) bath in the evening.
* Brush your body with a loofah or long-handled brush in the bath.
* Ease painful tender points with a self-massage device (like a tennis ball).
* Do yoga and stretching exercises to relax.
* Listen to calming music.
* Meditate to tame intrusive thoughts and tension.
* Sleep in a darkened room. Try an eye mask if necessary.
* Keep the room as quiet as possible (or use a white-noise machine).
* Make sure the room temperature is comfortable.
* Avoid foods that contain caffeine, including teas, colas, and chocolate.
Therapies to Treat Insomnia When You Have Fibromyalgia
If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you.
The therapies help people handle stress better, which helps control fibromyalgia episodes, Cope says. “Fibromyalgia comes and goes,” she tells WebMD. “When you’re stressed out, that’s when it’s worse.” That’s when you’re most likely to have insomnia, too.
Medications can also help ease fibromyalgia pain at night, or directly treat insomnia. Medications to ease fibromyalgia at night include antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.
No one therapy will control fibromyalgia pain 100%, Cope adds.
“Medications help some. Exercise helps some. Stress reduction helps some. Cognitive behavior therapy helps some… If you can get restful sleep, you’re going to function better when you’re awake.”
Fibromyalgia 
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