Jump to content

Fibromyaglia and chronic fatigue
How do you cope


  • Please log in to reply
9 replies to this topic

#1 Indriya

Posted 09 March 2012 - 03:40 PM

I know they are different, well I think I know.....

I haven't been diagnosed with FM I have an appointment in a couple of weeks.  Thevdr seems to think that's what it is.

Anyway I sat on the lounge yesterday and felt ok so I thought I would go to work today.  I lasted 3 hours.  Now I'm back on the lounge after an energy drink and I feel like I haven't slept for days.

What helps you guys get through the day.  I have 4 kids, plus a small business (more like my hobby) and work 2 days a week (school hours).

I'm struggling and desperate.  I hate feeling so tired all the time.



#2 ~MakkaPakka~

Posted 12 March 2012 - 04:52 PM

Hi original.gif

I am in a current CFS crash  and have found that taking vitamin b12 injections every three days, high dose of coenzyme Q10 tablets piggybacked with a high dose vitamin B and also started taking vitamin D.

It has helped me greatly, I am feeling a lot more normal and don't have issues with brain fog ect.

I am also on antidepressants which I have gone down in dosage (been on them for years).

I also have four children and trying to study, I usually manage with the help of my DH, if I need a rest, I will rest or I know I will end up paying big time in the long run.

I hope things get better for you soon  bbighug.gif

#3 lozoodle

Posted 12 March 2012 - 04:55 PM

My mum has fibromyalgia. She says when she has a flare up the best way to describe it is total wooziness. She said its just this overwhelming tiredness and she can't possibly do anything.

She was only diagnosed last year, I can't remember exactly what they did to diagnose it but she'd suspected it a long time time as she had all the symptoms.

The only thing that helps is to sit back and relax when it happens. She notices the flare ups usually happen when she is particularly stressed out.

Edited by lozoodle, 12 March 2012 - 04:56 PM.


#4 unicorn

Posted 14 March 2012 - 05:34 PM

It's frustrating isn't it. I haven't had a full on crash for a few months now, but I have an continual weariness. I've just had a 2 hour nanny nap and will be ready for bed in about 2 hours.
I know how far to push myself and I try and push a little farther but having that limitation drives me crazy. Knowing that if I do too much today I wont be able to move tomorrow. I have developed arm tremors  over the last couple of months which bug me no end too. I feel so clumsy, I butchered a tomato trying to make my lunch yesterday.
I have taken up more mundane hobbies that aren't so strenuous, I have set up an online business so I am still working but I can go and have a lay down if I need to.
My kids are older now, youngest is 7 so if I am really struggling they can get themselves ready for school. DD's primary school know what is wrong so if DD turns up without lunch and her hair not brushed they take it in stride and make sure she is fed and fussed over wub.gif The others are all teens now and they have been wonderful picking up the slack, it's also teaching them how to fend for themselves so it's win win IMO.


#5 whydoibother

Posted 08 April 2012 - 08:54 PM

I have SLE and most lupus sufferers have Fibro as well-I find exercise does help.  It helps the muscular pain and fatigue.  Trick is not to over do it.

#6 Lim Lam

Posted 09 April 2012 - 07:39 PM

My mum has FB and is on a myriad of medication, but the one she can't function without is her Tramadol and when its really bad her steroids...

#7 Bubble11

Posted 12 April 2012 - 03:19 PM

Antidepressants (not for depression) have been a life saver for me. They've helped me sleep for years.  I was on Avanza (an unusual choice by my doctor but the only thing that helped) now I've had to go off it to TTC and I'm on Restavit which is over the counter.  Fibro and CFS are very different, I have both.  Diagnosis is based on the prominence of your symptoms (pain for Fibro, fatigue for CFS) and what specialist they refer you too rolleyes.gif (rheumatologist or immunologist).

For me I had to quit work, at one stage I could barely make it across five feet of hall to the bathroom, but everyone gets it to different extents.  For me nothing except complete rest, and I mean complete not watching TV or siting up, was the only thing that helped me recover.  I've meditated a lot, some people find resting watching TV or reading is fine, others find this draining like I do.  For me Avanza (which forced me to sleep), complete rest, meditaiton and pacing (see below) and once I was a lot better slowly increasing my exercise helped.  I started just walking to the mail box daily, now I can do 20 minutes and much later I added yoga which really helps keep the pain under control.  I feel best when I pace, eat well (no caffeine, no sugar which are both problematic), exercise regularily and losing weight if your overweight can help take some pressure off your body (something I'm in the proccess off so on my mind).  And avoiding doing too much of things that trigger the pain - for me typing or writing or cuting for too long (but I have particular pain in my shoulders and jaw), siting up right too long.. well there's a few but the main idea is to find your triggers and try to avoid them.  The site on pacing below has more info.  Your state probably has a fibro/cfids group too, and there's monthly magazines.  These guys http://www.fmnetnews.com/ out of the US have lots of info, and a magazine you can subscribe to and they send out regularily, lots of good info about cutting edge research and treatments, what's worth trying and what's not.  


For treatment options there's always painkillers (it doesn't have to be anything strong, some people find 2 panadols before bed in the evening take the edge off if pains a problem) and anti-inflamatories.  Also antidepressants (the old tricyclics help some kinds of chronic pain), some people find anti-epileptics help with the pain (they dont' know why).  Lyrica was hailed as the newest wonder drug, but only works for a percentage of people.  Vitamin D is often low in people with chronic pain/FM and can easily be tested for.  Supplementation of this can help, but get tests first.  Also for fatigue get your iron tested.  Is it more fatigue or pain your suffering?    If it's mostly fatigue and not pain they should be treating you for Chronic Fatigue not Fibro.  I find pacing a great help http://www.cfidsselfhelp.org/  .  Sorta all over the place today, there's lots of options out there, nothing that is universally helpful. I hope you find the thing/s that help you quickly bbighug.gif .  Although no treatment is universally helpful, lifestyle changes and management like pacing work for pretty much everyone who commits to them.

#8 OneProudMum

Posted 12 April 2012 - 03:27 PM

I will be watching this with interest.

I've just been tested for lupus, a recurred EBV, hypothyroid, ESR, Rheumatoid...

I had EBV 8 years ago. Some doctors believe it develops into CFS. I was doing quite well up until a couple of months ago and now I have crashed. Most of my symptoms, however, are significant to hypothyroidism which I know are significantly different.

It's a vicious cycle for me. My joints are aching so I take a small amount of codeine. Codeine causes constipation. Constipation worsens the lethargy and also affects the functioning of the bladder which increases a chance of UTI.

It's just going on and on for me right now. I want an answer!

Sorry to hear you are unwell, OP.

#9 Bubble11

Posted 13 April 2012 - 09:41 AM

xChelex - I just wanted to ask you mention fatigue but not pain?  This is really important as it is the dividing characteristic between FMS (fibromyalgia syndrome) & CFIDS (chronic fatigue Immune Dysfunction Syndrome).  Am about to go into a bit of detail but it's really, really important you get the right diagnosis as they have very, very different treatments.

Both these conditions are syndromes, which means they don't know what causes them.  A syndrome is basically a collection of common signs and symptoms that doctors believe have a common cause.  There is lots of debate about whether CFIDS and FMS are the same or different illnesses or as some researchers believe due to the inability to find a common treatment that they are several different illnesses that have been lumped together.  

FMS is characterised by widespread, basically constant pain.  Diagnostically you can't have FMS if you don't have pain, and it must be in the 4 quadrants of the body, above & below the waist and on the right and left hand side. If it's more localised it's generally a type of chronic pain - like pelvic or lower back, or myofascial.  Fibromyalgia in the latin basically means muscle (fibro) pain (myalgia). If the pain in predomently in the joints then it's likely to be something else.  diagnosis is supposed to involve a tender point exam but not many doctors bother with this.

CFIDS is beleived to be an immune condtion while FMS is a chronic pain condition.  Both have very different mediators and very different treatments, so it's important you get the correct diagnosis.Fibro treatment usually concentrates on managing the pain with combinations of drug therapy, gentle exercise and rest.  Chronic Fatigue treatment concentrates on supporting the immune system and the functioning of the mitochondria in the cells.  Mostly the treatment is symptomatic - as in it relieves the symptoms but doesn't treat the cause.  The only reliable path to some form of recovery is eating well and resting so that the body can heal itself.  

Chronic Fatigue is basically that - chronic, prevalent fatigue that is not improved by sleep (ie you wake up feeling like you haven't slept for a week, spent all night drinking or got hit by a truck - some of the things I've woken up feeling).  It can involve pain, but is generally more non specific and achy (think how you feel with a very bad flu, achy and exhausted).  The strongest symptom is the fatigue.  

Both these are diagnosis of exclusion - basically you have enough of the symptoms (the full list for both is very long) you meet the diagnostic criteria for the most important symptoms and we've ruled out all other conditions with these symptoms.  If you have CFIDS symptoms you might be lucky and actually have post viral fatigue which is often misdiagnosed and much better to get since with the right treatment and lots of rest most people recover fully from this in 2 to 3 years.

Edited by Bubble11, 13 April 2012 - 09:50 AM.


#10 Bubble11

Posted 13 April 2012 - 09:58 AM

QUOTE (OneProudMum @ 12/04/2012, 03:27 PM) <{POST_SNAPBACK}>
Most of my symptoms, however, are significant to hypothyroidism which I know are significantly different.  It's a vicious cycle for me. My joints are aching so I take a small amount of codeine. Codeine causes constipation. Constipation worsens the lethargy and also affects the functioning of the bladder which increases a chance of UTI.   It's just going on and on for me right now. I want an answer!


OneProudMum - if you only take a small amount of codeine you might be able to discuss with your specialist the idea of taking something else.  It seems really wierd, but regular use of panadol (2 nightly) at a regular time (it must be daily) can have a much stronger pain fighting effect than occasional use of stronger drugs and with a lot less side effects.  If you have inflamation fish oil's been shown to be useful for some inflamatory conditions (though you need fairly high dosages) and small regular doses of asprin 100mg daily trigger the body's anti-inflamatory responses (it doesn't work with larger doses, they've done double blind placebo trials with this).  Maybe you could discuss some of these options with your doctor.

Re the hypothyroidism this doens't always show on tests.  My GP put me on thyroid treatment for a couple of months to rule it out.  He said it's very safe and the only way of really telling if you have a problem.  This option might be worth discussing with your doctor too.  It's really frustrating not knowing, I hope you find out what you've got.




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Win $1000 with Sea-Bands!

Three lucky fans can win a Sea-Band prize pack valued at over $1000 each, which includes two Sea-Bands plus a $1000 Eftpos gift card!

Misery loves Facebook

Facebook users are often criticised for only showing the positive, fun parts of their lives. But what about when it swings the other way, when someone uses it for the purposes of ranting about their children all the time, never posting anything positive?

Toddler's adorable impersonation of pregnant mum

Little Ellis has noticed his mum is walking differently lately, and his impersonation of her is hilarious.

'Forgotten baby syndrome' can happen to any one of us

When my third child was two months old, I strapped her into her car seat, then promptly forgot all about her. But she survived, unharmed, because it was winter, and I was lucky.

Join the Real Mums Test Drive Team

Five mums or mums-to-be will join the EB Test Drive Team and discover great items at an exclusive Big W event. (Sydney only.)

Ten things I've learned about motherhood

Never take a good night's sleep for granted. There is no logic like toddler logic. Standing on Lego hurts every time. These are the truths of parenthood.

Parenting past the toddler years: what's next?

Your baby has grown into a toddler, and now your toddler is fast approaching the preschooler stage. What can you expect as a parent?

Tips on what to pack in your hospital bag

Before giving birth I read countless lists, ended up overpacking just a little, and now know what I'll actually want to pack next time.

New app keeps tabs on your kids at childcare

Popular new technology lets parents know what their children are up to at childcare - but not everyone is a fan.

21 things I love about newborns

There?s an irresistible magic about newborns. Of course they're not all smiles and rainbows, but they are undeniably cute and remarkable in so, so many ways.

Kid-friendly hairdressers: who says haircuts can?t be fun?

I?ve found some salons who boast setups ideal for children ? you name it, they?ve thought of it. All are designed to make haircuts fun rather than stressful.

Labour pain relief may reduce risk of postnatal depression: study

Postnatal depression is a complex condition, but researchers say pain relief during labour may help some women.

Why we need better support for men after miscarriage

In a recent study, 85 per cent of men admitted feeling sadness after their partner miscarried, but almost half said they didn't share their feelings at all. What can be done to help them?

Mum in business: Kristy Chong

Kristy Chong is the managing director of Australian-made Modibodi underwear and a mum to Lucas, 6, Jason, 4, and Isaac, 6 months. She shares her advice for other mums thinking about starting their own businesses.

From toddler to preschooler: a developmental roadmap

So your toddler is growing up and will soon be entering the preschooler years. Here are a few ways to frame their development that will help you understand what?s going in those beautiful, funny, clever little heads of theirs.

Mum sacrifices an eye for her unborn baby

Motherhood is full of sacrifices, but this woman has made a life-altering one - and her baby hasn't even been born.

A grandparent by any other name

A growing number of grandparents are shunning tradition and going against conventional names - but a grandparent by any other name still gives the same awesome cuddles and kisses.

Photographer captures the beauty of adoption

The love of a family is usually tough to capture on camera. This is an exception.

When labour just doesn't happen

After three healthy kids, I can?t help feeling I?ve been a little ripped off. I missed out on something I had always wanted to experience, and now I?ll never get the chance.

Be careful what you say, your baby is listening

The importance of speaking to your baby even if they are not old enough to answer back has been highlighted by new research.

Share the little things that make you smile

We're giving away a Mountain Buggy nano, the ultimate travel stroller - and here are some of the great entries so far.

Win a Mountain Buggy nano

We?re giving away the new Mountain Buggy Nano - the lightweight travel buggy! So show us the little things that make you smile for your chance to win.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Win a Mountain Buggy nano

We?re giving away the new Mountain Buggy Nano - the lightweight travel buggy! So show us the little things that make you smile for your chance to win.

Be careful what you say, your baby is listening

The importance of speaking to your baby even if they are not old enough to answer back has been highlighted by new research.

Win $1000 with Sea-Bands!

Three lucky fans can win a Sea-Band prize pack valued at over $1000 each, which includes two Sea-Bands plus a $1000 Eftpos gift card!

The beautiful moment a baby was born at the side of a road

It's not where she expected to give birth, but mum Corrine Cinatl is delighted that her daughter's roadside arrival was captured in a series of beautiful photos.

Doctor sings first Happy Birthday to newborns

His job is to deliver babies, but this US obstetrician also has a unique way of celebrating the miracle of life.

Join the Real Mums Test Drive Team

Five mums or mums-to-be will join the EB Test Drive Team and discover great items at an exclusive Big W event. (Sydney only.)

The Nappy Collective starts new drive

It's that time of year when the dedicated volunteers at The Nappy Collective do their bit to help out mums and children in need - and they need your help.

Baby shower cake wrecks

From misshapen cake babies to questionable text, from odd colour choices to internal organ recreation, these are the baby shower cakes that taste forgot.

Photographer captures the beauty of adoption

The love of a family is usually tough to capture on camera. This is an exception.

Pregnancy progression photo ideas

Want to record your pregnancy as your belly grows? Here are some creative, fun ideas for photo shoots along the way.

The myths and facts about "normal" breastfeeding

When it comes to successful breastfeeding, there is a wide variety to what is "normal", according to new research.

Tin can craft and DIY ideas

Got a few old formula, Milo or coffee cans around the house? Use these fantastic upcycling ideas to create items for around the house and yard.

Dads meet their newborn for the first time

Emotional photos of two fathers meeting their newborn son have resonated with viewers worldwide, attracting thousands of Facebook likes and shares.

Skin safety isn't just a summer worry

Lax about the slip slop slap with your kids as weather turns cooler? Here's a reminder as to why we have to remain vigilant for our children?s future health.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

Creative sleeping baby photoshoots

See how some parents and photographers have captured sleeping babies in unusual positions and using different props.

DIY kitchen and food hacks

DIY your way to a better kitchen and make cooking easier with our clever hacks. (Some content reproduced with permission from mashable.com.)

Winter warmers for babies and toddlers

Your baby or toddler will be nice and snug in these beautiful and fun winter pieces. Most are hand-made or knitted, and they're all designed to keep your little one toastie - and adorable!

 

Mind, body, beauty, life

Making time for me

We look at your wellbeing, covering health, relationships, beauty and fashion, mind and body.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.