Today is Fibromyalgia Awareness Day. You’ve probably heard about fibromyalgia, but maybe you don’t know exactly what it is. Even if you don’t know it, chances are good someone in your life battles fibromyalgia; it is prevalent in about 3-6% of the population.
What is Fibromyalgia?
Fibromyalgia is a disorder that causes widespread muscle pain and chronic, extreme fatigue. People with fibromyalgia also have painful “tender points” on the body in specific places on the neck, shoulders, back, hips, arms, and legs.
Other symptoms include:
- Trouble sleeping
- Morning stiffness
- Headaches
- Painful menstrual periods
- Tingling or numbness in hands and feet
- Increased sensitivity to heat, light, sound and smells
- Problems with concentration and memory (called “fibro fog”)
There are a smorgasbord of other symptoms and co-morbid (overlapping) conditions, including jaw pain/TMJ, bowel disfunction, carpal tunnel syndrome, restless leg syndrome, anxiety and depression.
If you think back to the last time you had a bad flu, that sore all over deep muscle pain and extreme fatigue, that’s the feeling that many with fibromyalgia live with every day.
Including me.
Living with Fibromyalgia
Life with fibro is unpredictable. The pain and other symptoms are inconsistant and come in “flares” that may last hours, days, weeks or longer. And although many people have certain triggers, like weather, sometimes there is just no rhyme or reason to it. In day-to-day life that makes us very unreliable. It’s hard to hold down a job when you never know if you’re going to be able to walk or drive or even sit. It’s hard to maintain social relationships when you can’t commit to events that are too far off, or you cancel plans at the last minute because you don’t feel well enough to go out. Not surprisingly, many people with fibro also battle depression, due in part to social isolation, financial strains and the difficulties that come with battling an invisible illness.
I know in my personal experience, dealing with chronic pain and fatigue sometimes makes me cranky and irritable. It’s exhausting, miserable work dealing with pain all the time. I have mood swings I’ve never had before, and I get easily frustrated. Combine that with fibro fog, and really it’s no wonder I get cranky. I hate being tired, confused and forgetful. As someone who used to excel in a busy, multitasking work environment, it’s extremely frustrating to find simple tasks confusing or forget basic things like my phone number or child’s date of birth. Sometimes this makes me not too pleasant to be around, I’m sure.
I sleep. A lot. It’s not unusual for me to sleep 9, 10 or even 14 hours if I have the opportunity. And it’s never enough. Sometimes I resent the number of hours in the day that are lost to sleeping.
I personally really suffer from morning stiffness, making it difficult for me to be the “get up and go” morning person I’m used to being. Some days it can take me as little as 15 minutes to get going, other days it can be up to a few hours. Even after two years I still wake up most mornings forgetting I have this particular symptom, and jump out of bed only to stumble and/or fall flat on my face. It’s quite the rude reminder to start the day off with.
Parenting with Fibromyalgia
Fibro has changed the way I parent in many ways. I can no longer be the “do it all” Mom that does playgroups and activities every day, and lots of crafts and keeps a spotless house. I’ve had to adopt a more laissez fair approach that means not making a lot of plans or keeping a lot of commitments, and taking it more one day at a time. I’ve learned to let go of the housekeeping a little (only a little, I’m aiming for more) and to make the most of days I’m feeling well. My older children, especially my eldest, are invaluable assistants to me and I try to see the upside to their learning valuable life skills instead of feeling guilty over how much I ask of them some days. I’m going to have some very appreciative daughters-in-law one day, I’ll tell you that.
I’ve finally (mostly) quit mourning the loss of the Mom I Used To Bed and try to make the most of things the way they are. If I can’t get out of bed or off the couch, that means extra stories and cuddle time with my little ones. We play a lot of board games and card games, and spend a lot of very simple family time together instead. Gone are the days when I used to take the babies for a two or three hour walk; instead we spend many mornings in the backyard where I can alternate between playing with them and sitting down. And although the kids don’t do as many formal activities, we keep busy on my good days with neighbourhood play dates, local outings and other activities. It was a long journey to realize that I could still be a Good Mom, just in a different way.
Staying Connected
One of the biggest blessings to me through all of these (besides Jeffrey, but that’s another post in itself) has been the incredible online community I’m surrounded by. My friends on Twitter and Facebook have been invaluable in maintaining my sanity and sense of self. Whether I’m in the backyard, on the go, on the couch or in bed, I’m always connected to friends new and old. I’ve found people I can relate to in ways I’ve never thought possible, and people who are just fun to be around and make me feel good. Even discussing the mundane with old friends on Facebook makes me feel less isolated when I can’t get out. I am so grateful to all of you.
What you can do
If you have someone in your life with fibromyalgia – whether it’s me or someone else – here are some suggestions for relating to them, helping them and understanding them:
- Read up on fibromyalgia on reputable sites and read The Spoon Theory (everyone with a chronic illness knows The Spoon Theory)
- Visit often, but be an easy guest. Offer to bring food, a game or a movie.
- Ask “Is there anything I can pick up for you?” before you come over
- Keep inviting the person out, even though the answer may often be no. Keep asking! There will be times when the answer is yes, and those times will be great!
- Pass along any magazines, books, movies or games you are done with. We spend a lot of time on the couch or in bed and any entertainment is appreciated.
- If you go out somewhere, offer to drop them off at the door while you park. Hold open doors, and take the elevator instead of the stairs. Outings can be exhausting, even on a good day.
- Stay connected online: if the person can’t make it out to social events as often as they’d like, chat with them on Facebook or instant messenger. Maintaining social relationships helps fend off feelings of isolation and depression
And remember, I’m still me! I may have fibromyalgia, but I don’t let it define me. I appreciate when you ask how I’m feeling, but some days I don’t want to talk about it. And some days, I’d much rather just talk about you and forget about me for a while. And on the good days, I’d rather talk about everything else I have going on, because I’ve got a helluva lot else going in my life! And it’s those days that get me through.
I also wrote about:
I have suffered with this for many yrs, till I tried a product called Inforce Immune Builder this product has turned my life around completely. I started with 6 per day for approx 3 months and now take 2 per day. I had tried every prescription available to me before this and to no avail did not work. I am now able to function and not in bed 99% of the time. It is very much worth looking at. Hope I can change your life like it did mine.
I didn’t know you had Fibro, I knew something was up with the doc appointments and what not, I even asked once on FB, but the message got lost, or I caught you on a day you didn’t want to talk about it. Honestly I’m astounded you do as much as you do and I’ve always thought of you as a super mom – now you are the ultimate momma!!
Thanks Rosa! Some days I feel like I accomplish a lot and other days not so much… I just try to make the most of the good days. Also it’s amazing how much I can accomplish from the couch with my MacBook ;)
And I’m still riding the merry-go-round of doctors for my other “mystery illness”… that’s a post for another day! (Mostly detailing my frustration with Ontario’s health care system, LOL).
[...] Fibromyalgia Awareness Day | adventures of a mom, geek, gamer [...]
Life with fibro is unpredictable. The pain and other symptoms are inconsistant and come in “flares” that may last hours, days, weeks or longer. And although many people have certain triggers, like weather, sometimes there is just no rhyme or reason to it. In day-to-day life that makes us very unreliable. It’s hard to hold down a job when you never know if you’re going to be able to walk or drive or even sit. It’s hard to maintain social relationships when you can’t commit to events that are too far off, or you cancel plans at the last minute because you don’t feel well enough to go out. Not surprisingly, many people with fibro also battle depression, due in part to social isolation, financial strains and the difficulties that come with battling an invisible illness.
+1
Have you tried taking magnesium? I take it for fatigue but often see fibromyalgia recovery linked to magnesium therapy as well.
I actually do take a magnesium supplement. I’ve read it’s good for depression among other things, but that’s the first I’ve heard for fatigue. It’s definitely helped with my digestion, but I haven’t noticed any improvement with fatigue.
Thanks for stopping by!
It’s hard to explain Fibro when you look sorta normal.
I was diagnosed at 29 (I’m 44) and had small children to take care of. I have done really well but the last few years have been extra stressful which make for a bad combo with fibro!
Wish more people understood it.
Thank you for linking up this terrific Fibromialgia post to the Do Good Link Up! I really appreciate you dropping by. I have a friend who suffers from it but didn’t know much about it. I struggle with depression myself and have a lot of similar symptoms, particular creating challenges with parenting as you’ve said about your chronic condition. Hugs!
I know that when people get their spine and pelvis regularly adjusted by a chiropractor and their nerve system is optimized, the symptoms of fibromyalgia are reduced or eliminated altogether. With proper stretching and exercises in place also, you can be at your best. I have seen many patients in my career as a wellness chiropractor improve leaps and bounds instead of just suffering with difficulty functioning and discomfort. Like anything involving the body, it requires constant effort to see longterm gain and results.
So true! I know I need to get back to see you, thanks for the reminder ;)
I so appreciate those of you that can write about this disease. I can no longer write, let alone think, and it’s only on my “good” days that I can even read, but when I do I am amazed to read about those of you that are so young and with children and having to deal with this. I can’t imagine having to wake up and deal with “spoons” during the day and have children to take care of….how do you do it? I can barely make it through my day and I’m now retired. I had to take an early disability retirement because I could no longer work. I can hardly walk, sit, stand, talk, think, not to mention the IBS, pain and depression. I also have a severe case of COPD so I think I’m minus spoons when I wake up hahaha.
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I’m sorry to hear some of this. I keep hoping someone made a mistake. I’ve been trying all week to find relief from the foot pain and nothing helps. Between fibro, PTSD, depression, and anxiety (but why they don’t just call that PTSD too I dunno) I really just don’t know if I’m strong enough to fight off the depression with all this pain.
You’re awesome though. Working, raising children, writing….I’ve been trying to force myself to eat for a day or two. The bagel remains in the toaster.
I’m not whining (really) or desirous of sympathy. Maybe some advice…
Point is – to all the ladies out there who can live their lives despite the pain and confusion and such – be very proud of yourselves. If you need to rest for a day, you deserve it.
Pre-fibro, I battled similar symptom with my other diagnoses and the aches and pains resulting from 12 broken bones.
Here are some things that helped me: Morning stiffness – walk, slowly if necessary all around the house until your muscles are warmed up. Then do a combo of yoga/Pilates/stretching slowly to release the stiffness. I think womenshealth.com has a stretching video. I usually do some variation of warm up stretching from my dance days and use the stationary? What’s the word? Strengthening exercises like getting on the yoga mat like you’re doing a pushup but with toes and forearms on the floor to strengthen my core. I stretch what needs it and do strengthening exercises for the supporting muscles that relieve the ones that hurt.
Also, acupressure – find the center of the knot and push as hard as you can stand it while breathing through the pain. With your fingers and your muscles you can feel that knot start to loosen. Press harder. Usually 3 bouts of pressure exhaust my hands and I have to stop – but it’s the only way I can ease those knots at the very base of my skull that make me feel like my head is being squeezed to death. Oh yeah, exercise balls of all sizes (I have 4) placed under back, neck, foot, etc take all the pressure off the muscles involved. Like floating in a pool. No gravity. Don’t overdo it though.
Drink a lot of water. All the time. But even more before a medical massage or relaxing tight muscles via exercise. Something to do with lymphatic fluid and other chemicals dumped into the system when things circulate properly.
For brain fog – try a liquid b complex called a tincture. But look up the brand first, some taste awful.
THE best is a supplement called neuro-plus by Tyler pharmaceuticals. Again, I haven’t tried it w/fibro.
Fatigue: fake sunlight helps, 10-15 min exercise. Some days you can’t buy you can try. Guided rest meditations improve sleep. Check out iTunes – “mindfulness” deep rest, relaxation. They aren’t religious but can be spiritual if you so choose. You have 3 weeks to hit gnc for products containing Dimethylamylamine 3 before it’s pulled from the market. It’s too close to amphetamines & gives false positives in drug tests.
I, however, take the real stuff and don’t reproach me; I’m just being honest. I’ve taken Dexedrine, dextro-amphetamine. Amphetamine salts and something else. But I/we lowered the dose and now I take Nuvigil with it to stay awake. I DO not recommend that you ever start taking the add/ADHD stuff. It’s hard to stop (I fell asleep driving). Nuvigil/Provigil/concerta are rx wakefulness promoting and you have to taper off them but you can do it quickly.
Also, beware of Xanax, Ativan, etc. 10 consecutive days of taking it and your body is dependent on it. It isn’t addiction but your muscles tense up really bad if you don’t take it. Wish my dr had told me that 5 years ago.
Well, I hope I’ve helped someone because that is the only thing that makes me Feel better these days. Emotionally I mean.
I did not intend to write all that – if you wish to move it somewhere more appropriate you may. Else, delete it?
Also I have so many emails I don’t care I you give mine out. @gmx.com
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All the best,
Amy
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[...] one as well. Last year for Fibromyalgia Awareness Day I wrote a bit about what it’s been like adapting to life with FM/CFS, specifically the shift in my parenting style, which has been very hard to accept. Some days I feel [...]