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To wish there was more understood fibromyalgia < rant alert>

(39 Posts)
PiperIsTerrysChoclateOrange Thu 04-Jun-15 22:46:44

I'm a sufferer, it means I can't make plans or can't commit to plans. I'm often forgetful and have poor concentration. That if I'm not having a fibro fog or feeling so exhausted that I struggle to do anything.

ChuffinAda Thu 04-Jun-15 22:49:44

I feel your pain as a fellow sufferer.

Best thing I did was get to a pain clinic who put me on meds to settle my sleep which improved my pain. It's been shown we have a funky sleep cycle and the restorative phase is either skipped or cut short.

Once my sleep got regulated I started moving more which in turn helped regulate my sleep.

It's a controversial approach because the natural instinct when in pain and exhaustion is to rest.

I hope you manage to crack your cycle soon flowers

AyeAmarok Thu 04-Jun-15 22:50:58

I hear you Piper, my friend has Fibromyalgia and I totally understand that it is very misunderstood, even by doctors.

flowers

PiperIsTerrysChoclateOrange Thu 04-Jun-15 22:54:50

I am in the middle of an attack, my body is knackered but my minds awake.

ChuffinAda Thu 04-Jun-15 22:55:33

Its crap isn't it

Are you on any medications? Have you seen a pain specialist?

BabyMurloc Thu 04-Jun-15 22:57:23

My DH has it the differences from one day to another still stagger me. I've some friends with it as well. It is truly awful and VERY misunderstood.

PiperIsTerrysChoclateOrange Thu 04-Jun-15 23:01:10

Not as yet, but got zapain and zimovane tablets until then

Groovee Thu 04-Jun-15 23:03:21

I was recommended a lifestyle management course when first diagnosed. It taught me a lot about how to pace, and put myself first. I still get a lot of pain and flare ups, but manage to work 2 mornings a week and run brownies.

Unless you suffer, I don't think anyone can ever understand how debilitating this condition can be. I'm actually dreading my holiday this year after how much pain I was in last year.

AnyoneForTennis Thu 04-Jun-15 23:03:56

What is it? Excuse my ignorance. A young colleague has this and she seems to be struggling and hinting at, well, I'm not sure, but I sense she's at the end of her rope. I'd like to help her somehow

ChuffinAda Thu 04-Jun-15 23:05:13

Has anything been tried other than those yet? If not you've got a whole load of trial and error and frustration ahead of you, but, there are lots of medications out there now. Lots of options for physio and psychotherapies.

I've had it for 20 years and there is a LOT more understanding and treatments and progression about it now. When I was diagnosed it was almost as bad as being told you have ME

Now theyve got better understanding of how antidepressants and anticonvulsants work with pain and sleep cycles. They know the psychological impact and the importance of psychological wellbeing.

Mindfulness, cbt, yoga, gentle swimming, gentle walking, just getting up each day and having a wash, all help.

If you want to chat off board feel free to pm me flowers

ChuffinAda Thu 04-Jun-15 23:07:40

Ask your gp about amytriptiline, nortryptiline, gabapentin and/or pregabalin. All very good treatments for neurological pain conditions.

ChuffinAda Thu 04-Jun-15 23:12:45

Meant to say they all also have a very good soporific effect and will help with the sleep issue

edwinbear Thu 04-Jun-15 23:14:58

I also wish I understood it better and there was more info out there. My childminder has recently been diagnosed with it. She doesn't look well at all but keeps soldiering on like a trooper.

ChuffinAda Thu 04-Jun-15 23:22:08

This is a link about it from the sleep foundation
This is the fibromyalgia association

I'm going to bed but I'm more than happy to help if anyone wants to PM me

AndNowItsSeven Thu 04-Jun-15 23:31:42

Yanbu I have arthritus , fibromyalgia ( and a rare condition that will out me) I often miss off the fibro as I feel judged.

TaintedAngel Thu 04-Jun-15 23:59:58

My Mum and I have fibro. She is quite bad with it but so far I have been fortunate in terms of hardly getting bad days and when I do paracetamol helps. Though due to rule changes at work meaning I can't wear my jacket I can see the fluctuating temps in the building causing havoc with me.
fibro fog is where I do suffer. heads mush all the time. Its a hard condition because no one really understands it or can relate and because you can be bed bound one day then fit enough to run a marathon the next people don't take you seriously. angry

kali110 Fri 05-Jun-15 00:05:50

Another sufferer here. Iv been on two different medications so far.
Taken years to diagnose me.they don't like to diagnose young people apparently.
Also happy to leave them in pain too hmm

TaintedAngel Fri 05-Jun-15 00:06:46

oh in the note of meds - when I was diagnosed I was immediately offered strong co codamol. I told GP that while I was managing with paracetamol I didn't want to go to strong tabs. I did mention that my biggest fibro issue is the fatigue. I struggle making it through a day at work. no amount of sleep is ever enough. I'm so easily tired etc and wanted help with that (was thinking vitamin advice or something) and she gave me amitryptaline. All that does is knock me out for a solid 12-14 hours. that's just 1 tablet haha. That was swiftly stopped.

kali110 Fri 05-Jun-15 00:10:16

People dont understand at all. Years ago i could be out all ignt for days on end, going to gigs etc. i cant even stand for long now!
Going to see a band leave me knakered and in bed for two days!
People think your fine too and moan that you don't give up your seats for oothers when youre onthe bus.
My hands shake, i can't remember anything and iv always got a headache. I go to bed in pain and wake up in pain. In my back, arms, hands, neck and legs.
People think i'm lazy.
They think it's great fun me being off work at the moment.
Oh yes i'm living the life of fucking riley

kali110 Fri 05-Jun-15 00:11:25

Widh amitryptaline had knocked me out lol ! No tablet has ever done that for me

AndNowItsSeven Fri 05-Jun-15 00:22:11

Can I ask do others have severe pain in feet and hands. Mine throb so much I sit there sobbing while dh squeezes them really hard which helps a little.
I am not convinced fibro is the cause but I could be wrong.

BishopBrennansArse Fri 05-Jun-15 00:23:35

I'm the same with amitryptiline. I'm a zombie. Anyone know the solution?

AndNowItsSeven Fri 05-Jun-15 00:29:46

Try pregablin instead?

Talismania Fri 05-Jun-15 01:44:41

Many people still think that fibromyalgia is not real because the cause is not known. People who say they have it are attention seekers, it's all in their head etc.

I don't have it but a close friend does and this attitude drives me nuts. Even some doctors still think that way.

FanFuckingTastic Fri 05-Jun-15 01:58:09

I have it with other health conditions, I also tend to leave it off when talking about my disabilities or health, because even my own family don't get it, never mind strangers. Can't possibly be that ill or that tired all the time, must be lazy, all in your head sort of thing.

My health has generally deteriorated since I was diagnosed with fibro, my arthritis has spread, my kidney function has decreased, I have POP and continence problems, sleep issues and chronic pain.

I've been on tramadol XR for the past few years, which made me functional, even if it didn't really make the pain much better. I am currently on a switch from that to gabapentin. I am a bit worried it won't help with pain, but willing to try anything really. I take amitriptyline for nerve pain after shingles, but it helps a bit with the fibro pain too. And a medication for bladder spasms, which are apparently part of the fibro.

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