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Fibromyaglia and chronic fatigue
How do you cope

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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 LunaMombie

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 LunaMombie

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 LunaMombie

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.

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