All your fibromyalgia experiences, questions and answers.

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Postby Butterfly8588 » Sun Apr 28, 2013 12:38 am

Hi there,
I may have posted about this before but im not sure so i apologise if i have! Basically i've had fibro 4 years now (although not confirmed until last year i think) and im still trying to work out 'patterns' of things that make it worse if there is such a thing.
Ive been going through a bad patch for a while now, which is slowly getting worse but i cant figure out why. I've tried moving more, moving less and everything in between and it doesn't make a difference, short of running a marathon of course which i imagine wouldnt be a good idea. Anyway you get the point.

Also as my pain increases i find the fibro fog gets worse and im getting so frustrated with myself cos i forget everything and everything else seems to ramp up to. I've started taking one 50mg Tramadol as i go when the pain is really bad but they make me feel so ill taking them like this and i dont know what to do. My legs are the worst thing at the moment and i just cant sleep some nights even though ive taken something to help me sleep (dolsupine or something like that) and a Tramadol.

Two nights this week ive been up literally all night which in turn keeps my partner up all night and im really swimming against the tide at the moment. My doctor is so good to me and tries to help as much as he can but short of drugging me up to the eyeballs again which i really dont want theres not a lot he can do.

Anyway im sorry im rambling im not making much sense at the moment i know! What im trying to ask is is there a pattern to these 'attacks'? I know stress is one trigger, which is really hard to avoid sometimes but do you find any others you'd share with me please? You've all much more experience then me im sure!

Take Care xxx
Last edited by FluppyPuffy on Sun Apr 28, 2013 9:40 pm, edited 1 time in total.
Reason: Made paragraphs clearer for esier reading.
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Re: Patterns

Postby cameron1 » Sun Apr 28, 2013 12:56 am

Hi hun

The weather makes a difference to me. Cold weather makes me really bad. I almost feel as though even my bones are hurting.
Diet...i cant eat ready meals, jars of sauces etc. Basically processed fats. I have to cook to from fresh.
Stress, worry, anxiety
Any illness, like a cold,flu etc really aggrevates my FM
Lack of sleep
If I really hurt myself
And sometimes, just life aggravates it

And I get what you mean about certain symptoms being worse at certain times. The cold makes the physical pain worse for me. But the fatigue/stress makes the mind fog and pins and needles worse than normal.

Do you find anything else helpful? Ie physio, massage, pilates, sunshine, heat etc?

Perhaps you need to take your meds up for a few weeks? Once the FM calms down (finger crossed) it could be reduced again.

What bit is worst for you at the minute.
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Re: Patterns

Postby Butterfly8588 » Sun Apr 28, 2013 1:34 pm

Yes the cold does make a difference, as you say you feel it all the way down to your bones. I really struggle to be able to prepare food because i get so tired and i struggle to get the motivation.

As for things that help i havent found much. I've never tried physio or massage because the thought of someone touching me to much makes me want to be sick. I tried, i've forgotten what its called, the one with all the pins? and that didnt do anything. I've used a heat matt that i've had for years since i had bells palsy and it helps to some degree but the problem i find is it only helps while i've got it on me.

I think sunshine helps everything cos it makes you happier to see it. Spring and Autumn are always my fav times of year because you get the sun but its not to hot! I cant seem to control my temperature (either hot or cold) very well anymore since i've had fibro so i struggle in extreme temperatures.

I've always been someone who needs more sleep even before i started to have pain and all the rest but it really got bad at puberty and i was often absent from school because i simply couldnt get up in the morning no matter how much sleep id had. I've no idea if that had anything to do with what i have now but it seems a coincidence.

Now my sleeping is terrible, i have to take something to help me get to sleep as i said in my previous post cos unless i hadnt been to sleep for a few days my brain wouldnt shut off no matter how tired i was. Even though i physically sleep now (usually) i feel no less tired in the morning and infact sometimes i feel worse then i did before! I get very vivid dreams and a lot of nightmares and sometimes i struggle to tell if someone actually asked me to do something or if i dreamt it! i feel like im going mad sometimes.

At this moment the worst bit is probably the pain in my legs and the near constant headache ive had for a few weeks now.
Does any of this sound familiar to you? I really do feel like im going mad sometimes with all these 'little' things that combine together.
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Re: Patterns

Postby painprincess1 » Sun Apr 28, 2013 9:23 pm

a big yes to the weather . when its cold im worse.1 but in saying that when i have a flare it can last over a month easy and nothing seems to trigger it off.thy seem to come and go.yes stress does it and illness, but who dont get them.i wish i knew why i get them when i do.sadly u will just get used to them coming and going.if u ever can get used to this .when im very bad it doesnt matter what i do nothing helps .it just has to work its way out for me. :-?
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Re: Patterns

Postby FluppyPuffy » Sun Apr 28, 2013 9:59 pm

Stress/worry, additional illnesses, weather et al all add to how I feel as well, and sometime when it seems like things a bobbling along nicely for me, things will show themselves for no apparent reason, as if I'm being reminded that that it's all there and has a hold :facepalm: :facepalm: :facepalm: :facepalm:

A lot of the meds we take need to be taken regularly to get the best out of them. Quite often they need a while to build up in our systems before their effects can be properly felt, so if things are being taken on more of an as and when basis, they are less likely to to be as effective.

With Tramadol, I was told to take a regular dosage that kept things at a manageable level, then when things intensified, increase it as needed, then reduce it again when things started to ease back again, might be worth seeing if a similar approach could help you. You will probably feel awful when you first take them, but as you get used to them, these side effects should start to reduce and hopefully some benefit to pain levels will be felt as well :fingerscrossed: :fingerscrossed: :fingerscrossed:

Heat on particularly hurty areas can help. A good old hottie bottie is something a lot of us use, as well as the heated wheaty bags that can be zapped in the microwave. Hot baths can help as well, esp with relaxing, it's something I make sure I have pretty much every night, a couple of hours or so before I go to bed. Adding something like bubble bath or using a range of smellies that help with settling things down can add to the soothing and relaxing effects as well.
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Re: Patterns

Postby LouLou » Mon Apr 29, 2013 2:43 pm

Hi butterfly

It's so frustrating when you just can't put your finger on why you are hurting so much/feelting so tired/drained etc. I used to be such an active on the go person before FM and then it hit me and everything I ever knew or did was out of the question. I was just left with the "why?" everytime I felt this way. Like you even on rest days I often feel more pain but that's usually my body catching up with me if I've done too much for the few days before.

When I was first diagnosed my GP recommended that I kept a diary of what I did on each day/what I ate/drank/exercise etc and then marked in the same diary my pain levels. He said FM was so different to each person that the only way to pin point what caused my flares was to keep track of what I do each day. Sometimes the body does this thing he called "payback" where it won't hit you for a day or two when you have overdone things, but when it does you know about it. And that's what used to confuse me as I'd be thinking "hang on a minute I've rested all weekend why am I so bad today?" Then I'd remember that I'd done too much running around just before the weekend and my body was now playing catch up.

By doing the diary I found that my triggers were pretty much the same as the other posters on here:

* Stress/worry
* Running around too much
* Late nights out (very rarely happen these days I'm curled up with my kindle in bed by 8pm most nights lol)
* Doing too much at work
* Doing too much of my exercises
* Weather - when it's cold I'm much worse
* Normal illnesses like a common cold or virus can floor me for weeks

I hope that helps a bit butterfly, though sometimes FM does appear to bite me on the bum sometimes for no reason I can think of at all other than the fact it likes to suprise us!
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Re: Patterns

Postby FMEDSKittyWarrior » Tue Apr 30, 2013 8:56 am

Hi Butterfly,

Get your GP to refer you Pain Consultant it might help to workout the different pain meds that will work for you. I am lucky that when first got sick to be referred to a pain consultant and through a safe trial and error we found what pain meds work for me. I also have the heavy weight meds for the flare ups which means I am not desperate when my usual meds do not work.

I also use sticky heat patches when muscles go into spasms!

I wish the best :-D
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