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

 

How I learnt to relax about routines

After many routine-led, tough years, we've realised that being parenting isn't about being perfect. It isn't about following a schedule to a T.

Should you have a third child or not?

I thought our family had been complete with our two boys. I had no idea how much I needed my daughter until she was here.

Helping a toddler embrace an adopted sibling

A single parent by choice, I am preparing to adopt a second baby from Morocco. And I face a special challenge.

When pregnancy messes with your self-esteem

Pregnancy doesn't make all women feel beautiful. It certainly doesn't raise every woman's self-esteem.

Join us in The BIG nappy change

Introducing the new Coles Little Explorer Nappies! You can confidently rely on Coles Little Explorer nappies at each stage of your child's growth, so take the Big Nappy Change and try new Coles Little Explorer nappies for yourself!

Robbie Williams live tweets wife's labour

And the award for most patient woman in labour goes to ... Robbie Williams' wife, Ayda Field.

Vaccine ignorance is deadly and contagious

In the absence of credible, strong political leadership, paranoia about disease can go viral.

Parenting differently based on birth order

All children have unique personalities, but keeping birth order in mind could help when parenting.

How to get rid of the mum guilt

Motherhood and guilt seem to go hand in hand, but there are ways to focus

Paid parental leave scheme grinds to a halt

The future of Prime Minister Tony Abbott's paid parental leave scheme appears to be up in the air, despite the fact it is due to begin in less than nine months.

The devastation of foetal alcohol spectrum disorders

No one's sure how many Australians are affected by foetal alcohol spectrum disorders, but the consequences for those who are can be devastating.

The pros and cons of finding out the sex of your unborn baby

It’s often one of the biggest choices parents make during the course of their pregnancy; to find out, or not to find out, the sex of their baby before it’s born.

Toddler's awesome dress up month

Two-year-old Willow and her photographer mum, Gina Lee, made October "Dress Up Willow Month". She posted photos of Willow's costumes on her Instagram account, and her creative takes on popular culture are simply adorable.

Childhood around the world

It can be easy to assume our ideas around childhood are universal, but they are particular to where we live, as these practices show.

Best picks for baby and toddler shoes

Here's a great selection of footwear from pre-walker to walker ensuring comfort and style for growing feet.

I lost my wife and daughters to Ebola - then it came for my son

Sunday, September 21, is a day I will never forget.

The 'yucky' illness that took over my life

I have a chronic illness nobody likes to discuss. It involves toilet talk, and probably caused my miscarriage. But it needs to be talked about.

Prenatal testing: the facts

Prenatal testing is done to check if a baby has certain medical conditions before birth. Here is some important information about what the tests are for and the risks involved.

5 things to do with your baby?s old clothes

Did you think your only option for your baby?s old clothes was to pack them away or give them to the Salvos? Think again.

Why it's possible to not realise you're pregnant until the baby arrives

After hearing about 'surprise babies' born to mums who didn't know they were pregnant, it's common to ask "how did she not realise?" But experts say it's entirely possible for it to happen.

'My miracle is finally here'

How has the world continued on its pace when mine has been altered so drastically?

Dairy can help older women fall pregnant: study

Ice cream may be the ultimate comfort food, but a study suggests it could also help older women to have children.

Megan Gale goes topless for 'sexiest people' cover

Six months after a heavily pregnant Megan Gale posed nude for Marie Claire, the glowing new mum has gone topless for the cover of another magazine.

A new perspective on life from living with two diseases

A mother shares her personal story about the difficulty of living with two conditions, one of which stops her from being able to see her daughter's face.

Warning about Children's Panadol dosage

The Therapeutic Goods Administration has issued a safety advisory warning parents about confusion when using the dosing syringe supplied with Children's Panadol.

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

Take 'The Coles Big Nappy Change' Challenge

You could become part of our Test Drive team and win one of 200 packs of Coles Little Explorer Nappies as part of our 5-day challenge.

Win 1 of 5 Canon Powershot D30 cameras

Capture life more easily with the Canon Powershot D30. Shockproof, waterproof and dustproof, you can take it almost anywhere and shoot beautiful images, time after time. Enter now!

16 parenting truths you won't find in the baby books

I am five years into this parenting gig and I’ve learnt that sleepless nights and changing dirty nappies are child’s play.

Best and worst potty party cakes

It's nice to celebrate a child making the shift from nappies to 'big kid' undies, but do we really need a semi-realistic used toilet cake to do it? Here are some of the best and worst cakes parents have used at 'potty parties' around the world.

7 tips for a financially festive Christmas

Plan ahead - and do it now - to ensure festive season expenses don't break the bank.

'Go the F*** to Sleep' author's new book for frustrated parents

A sequel is coming soon to the 2011 hit book 'Go the F*** to Sleep' - and this time, it's about mealtimes.

Great birthday party buys from Etsy

Handmade crafts to decorate and personalise your child's next birthday - from banners to cake decorations, we've got gorgeous party finds from Etsy.

Join us in The BIG nappy change

Introducing the new Coles Little Explorer Nappies! You can confidently rely on Coles Little Explorer nappies at each stage of your child's growth, so take the Big Nappy Change and try new Coles Little Explorer nappies for yourself!

Creative storage ideas for the kids' rooms

Creative and practical storage ideas for the kids' toys and books can also add some stylish decor to your home. Visit babyology.com.au for more stylish modern finds for hip kids & parents.

Weird trend

Couple has five babies in 14 months

Julie and David Grygla weren't sure they'd ever have kids - but their dreams have now well and truly come true.

To the mum in the doctor's waiting room

Maybe the mum I saw in that waiting room, seemingly disconnected from her baby, doesn’t have the support she needs.

10 space-saving nursery ideas

Starting a family doesn't always mean moving into a bigger house - not yet, anyway.

 

What's in a name?

Baby Names

Looking for a classic name, or an unusual name? Our Baby Name Finder is for you, search or browse to refine your shortlist.

 
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.