I'm a newby

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I'm a newby

Postby SianyH0911 » Sat May 05, 2012 7:58 pm

Hi Guys :-)

I'm 39 and have been coping with this for 4 years but only got diagnosed with FMS about 6 months ago. I hate going through this. I feel like I should wear a badge saying "I'm not stupid! :crazy: Its not because you've upset me that I'm crying! :cry: Sometimes forget my OWN name! :?: This look on my face IS pain! I'm not hobbling for sympathy! If I look tired its because I AM :sleep: Please don't stare or call me stupid, ask me!!

I have a great employer :-D I don't think they understand but, with help from the Occ Health (who gave me the link for this site), they are having to be patient with me and with more help from doctors (there is 2 docs who beleive every word I say and they are great) I have managed to reduce my working hours to 20 per week because that is all I can handle (I have come from full time). I also have a great husband. In the beginning he didn't really understand what was wrong but once he read up on it he understood why he has to help me in and out of the bath, why I toss and turn in bed or twitch quite badly (my husaband calls that my Michael Jackson). I worry that he didn't sign up for this when he married me but then again neither did I!!

I feel like I'm getting worse and its scarey. My husband is even building a bungalow for when ......... I don't even want to think about it :cry:

I've tried so many different tablets, I've had LOADS of tests and I just want someone to tell me to take this pill and I will stop hurting
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Re: I'm a newby

Postby masonsbarms » Sun May 06, 2012 7:03 am

hi first sorry to hear you are struggleling ,but glad to hear you have a good dr, hubby,and employer.

reading your post sounds alot like myself.
i am lucky to be self employed and have a good team who take my load when needed.
i also worry about my hubby not sighning up tp this but like he says in sickness and in health and all that

i take tramadol paracetomal ammis and celebrex for the pain they take the edge of most days but sorry to say some days they dont.

this site has helped me alot as when told i had fm and its for life i crumbled.

because of this site i am putting myself back together.
you may have to try some diferent meds as some work beter for some and not others.

keep talking about how you feel to yor hubby and on here let it all out and dont worry about other people

my thoughts now are if you dont understand me then that is your problem.

not much help i know but just to let you see you are not alone
take care xx
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Re: I'm a newby

Postby Melbi_UK » Sun May 06, 2012 10:11 am

Hi Sian

I am new here too but I already feel at home :-D probably to many's despair :oops:

I too wish there was a magic drug that would just make all this go away. Reading here and replying where you feel fit does help. Try not to look too far into the future, you never know they might actually discover what causes fibro and then work on a cure for it.

They say fibromyalgia isn't a progressive illness, reading here I beg to differ but I still find some calm in the fact they say it doesn't get worse (for most people)

I was told by the rheumy it can take months and months to find the right treatment that will work for me, just me! What will work for me doesn't mean it will work for you or anyone else. So basically it is trial and error on the medics side and ours. /for example, I cannot tolerate caffeine, it will trigger the pain off so bad I can hardly move. Others can tolerate it with no effects.

Same with drugs, for instance, tramadol can cause severe vomiting for some, make them feel as high as a kite and other side effects while others can tolerate them.

So as far as treatment is concerned, I'd research it before trying it just so you can be prpeared but never say never becasue of what others have said about it.

When I went to collect my prescription a few weeks ago the pharmacist couldn't believe I was stood there and asked how the hell are you managing to stay awake on all these drugs, all have the side effect of drowsiness. Well for one, I didn't start on them all at the same time! Each one has been introduced slowly and my body (although I do feel some drowsiness everday) has got used to them or I have adjusted to feeling that way.

See, I've done it again, I've turned someone's thread into me. Sorry :cry:

I just find it difficult to say what I'm trying to say :oops:

I'm not keen on my rheumy but will give her her due, when she diagnosed me she brought my hubby into the room and explained as much as she could about the illness and gave me several leaflets to hand out to my family and friends.

You will grow a thicker skin over time and ignore people's looks and comments. You will learn what causes flare ups, brain fog, and everthing else that goes with this awful thing. You will probably get more symptoms and wonder if that is the norm or if it is something completely different. This is a wonderful place, almost like a medical book all about the condition and all created by people who suffer form it and not by some medical person who can only assume this that or the other. Here it is first hand experience which makes it a very vlauable and reliable source for all us sufferes. xx
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Re: I'm a newby

Postby denys » Sun May 06, 2012 11:54 am

Hi Sian and :welcome: to the forum :wave:

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: I'm a newby

Postby FluppyPuffy » Sun May 06, 2012 3:31 pm

:wave: :wave: Siany and :welcome: not to just the forum, but also on the quest to find that magical med/meds that will stop us all hurting :bear-dancing: :bear-dancing: :bear-dancing: We're all seeking for it in our own ways, so just join in and see what turns up :penguin: :penguin: :penguin:

There is a lot of info and advice on here, as well as support for each other and a bit of :crazy: :crazy: :crazy: :crazy: to keep us all going :mrgreen: :mrgreen: Have a look and read around, you could come across some useful suggestions.

Having people around you who understand can make a vast difference, same with having an understanding employer. Wondering about te future and the possibility of things worsening doesn't always help as FM loves to feed off all the worries and stresses and fears that we have. That doesn't mean that you should stop looking to the future all the time tho, as well all need something to hope for and look forward to. At the moment, while you're trying to find the right mix/balance of things for you, taking it day~by~day, or even hour~by~hour if you need to, can be the best approach :mrgreen: :mrgreen: :mrgreen:

Anything you want to know about, just ask and we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: I'm a newby

Postby shazq » Sun May 06, 2012 6:00 pm

:welcome: to the forum Sian :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: I'm a newby

Postby SianyH0911 » Mon May 07, 2012 7:29 pm

Hi Guys

I really appreciate all your advice and words of wisdom, its great to know that there are people out there who know what I'm feeling :-D

I had a really rubbish day yesterday :cry: I felt really tired and forgot to ask what everyone wanted for dinner, it just seemed like I forgot!!! Sounds stupid doesn't it? I have a 11 year old son who spends ALL of his time on his PS3, talking to his friends and only comes down when hes hungry. My husband had been working on our new bungalow so was shattered and I just forgot :cry: I think the saying is "The lights were on but no-one was home" Please say that is part and parcel of this?

Thanks again and I think I will be here more often.

Sian :-)
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Re: I'm a newby

Postby Melbi_UK » Tue May 08, 2012 10:32 am

Yes I think it is Sian as I am the same and read of so many others on here being the same too.

I think I've asked something but actually haven't. Or someone will tell me something and a few minutes later I',m asking the same question, much to my family's frustration.

Pen and paper doesn't always work either sa you can forget to write it down ot lose the paper :nono:

I am finding it much easier to just laugh at myself now with the forgetfulness, it just becomes dangerous whe it comes to cooking :yikes:

You will learn to adapt. Slow cooker, steamer etc instead of pans and oven. See the thread (is your house a tip) Well just read every thread lol over time and you will see that what people are saying is like they are describing you. This helpe tremendously xx
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