Help me please.

All your fibromyalgia experiences, questions and answers.

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Help me please.

Postby Bellatr1x » Mon Aug 26, 2013 4:21 pm

Hi I've been recently diagnosised with fibromyalgia after 6 years of being in constant pain some days worse than others and a permanent state if exhaustion. I have two small children 2 n 3 and thought it was normal to hurt all the time and be tired but over the last year things got really bad, to the point that walking my daughter to preschool (10 mins away) leaves me so exhausted I can't do anything else all day.

My dr ran some tests and they all came back negative. I've hsd an under active thyroid for 15 years, I'm 28, I am also a coeliac, have costochondritis and now this. Today it has hit me, this it is forever isn't it?? This is my life now.

I'm never not going to be in pain, I'm always going to be tired, yes the severity differs but even on a so called good day the pain is bad. I am taking gabapentin slowing increasing the dose and tramadol along with codeine and paracetamol, but always still in pain. I get confused easily, do stupid things like leave hob on and forget things too.

I am at such a loss. I don't know how to cope??? I'm devastated as this is my life now, I feel like ill never be able to fulfil myself, I was going to train as a fitness instructor and start work in my husbands company but I'm now unreliable. I cannot guarantee that ill be fit for work. I feel like my life is over. Help me please as I don't know how to deal with this.
Last edited by FluppyPuffy on Mon Aug 26, 2013 4:24 pm, edited 1 time in total.
Reason: Split into smaller paragraphs for easier reading.
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Re: Help me please.

Postby denys » Mon Aug 26, 2013 4:29 pm

Hi Bella, first of all :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: and secondly there is nothing to say that you wont feel better or that things will not become more manageable, you have 2 very small children and everything that goes with them so you are bound to be exhausted and if you have FM on top then you need some help to show you how to cope with it all.

Ask your doc about a referral to a pain clinic and maybe some CBT which hopefully should teach you some coping strategies. Once you have the tools then :fingerscrossed: :fingerscrossed: :fingerscrossed: you might find things settle down, the meds will take time to get into your system so you might not be feeling any benefit from them as yet.

The most important thing is to pace, each task you do needs to be broken down into smaller pieces and you do one bit then rest for 10 minutes (or however long you need to) then do another bit and so on this helps you do things without over doing it

Pop over to the 'where to say hello' board and introduce yourself, you'll find we are all in the same boat, so you should find plenty of help and support :-D :-D :-D :-D
Denys

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Re: Help me please.

Postby FluppyPuffy » Mon Aug 26, 2013 4:51 pm

:cow-wave: :cow-wave: Bellatr1x and :welcome: to our little sanctuary. I'm sorry you've been dx'd with this rotten condition, and fully understand how it is making everything seem so bleak and overwhelming, as what you're experiencing at the moment is what most of us have gone thru when we were told we have FM, so rather than being alone with it, you're actually in good company now :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

It's not really possible to say if you will be in pain and tired for the rest of your days as no~one knows what is round the corner for us. For all we know, there could be something that is being worked on that be the answer to our problems.

At first it does seem that your life is over, but as you find out more about how FM affects you, and what your capabilities are limits are, it is still possible to find ways to fulfil yourself. It may not be in ways that you had originally considered, but there is still a lot of pleasure and enjoyment to be had out of life. I know it doesn't seem like it at the moment, but there are always glimmers, and once you find the first one, you then start spotting more and more and things do get brighter along the way for you.

There are various ways to try and manage the things that FM throws at you. Meds are often used, and it's not unusual to find yourself on quite a varied cocktail to help ease various symptoms. Non~meds based treatments can help some, such as a TENs machine, hydrotherapy and acupuncture. To find out what is available in your area usually involves a trip to see your GP. And to help with the psychological impact of the condition, talking therapies can make a difference.

As well as these, we also tend to have other things on our toolkits to help with getting thru the FibroDays. Heat can often help ease things, so a soak in in a nice warm bath can make a difference, as can using the wheaty bags that get zapped in the mikey for minute, placing one on an area that is being particularly affected can also help ease things. For some, gel rubs make a difference, ones containing ibuprofen or arnica get mentioned quite regularly.

There is a board purely dedicated to Hints/Tips on Coping that might be somewhere for you to start looking. It can take a while to find the right mix of things that make the difference to you, so patience is needed to get you thru the trials and errors involved, but it is possible to regain a decent amount of control back over things.
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Re: Help me please.

Postby painprincess1 » Mon Aug 26, 2013 6:18 pm

hi hunnie, i have 4 children 3 teens and 15 months old .i have had fibro for 15 years that i no of.u will start to feel better when your meds are right.when i first went to the dr i was asleep in his office i didn't have the baby then just my 3 teens . i was working . i had to give work up and after a few months of different pills i started to feel better, most days i get pain more then feeling sleepy . and silly as this may sound i can cope better with the pain then being tired out.remember with fibro u don't get a good nights sleep add two tiddlers in the mix and your going to feel tired out. if your tiddlers sleep well at night ask your dr for something to help u sleep.im not talking sleeping pills but many of us are on amertripoline spelt that wrong lol it helps with pain and sleep.dont give up its alot to get your head round but belive me u will xxxx
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Re: Help me please.

Postby liv » Mon Aug 26, 2013 6:34 pm

Hello Bella
I have found that cutting out processed food, wheat, dairy and sugar considerably eases my pain.
I take natural supplements ... Osteo Bi-flex, Turmeric, Magnesium and a vitamin supplement and bathe in Epsom salts at least twice a week. For various reasons I had to stop this for a while ..... now I am back on I feel so much better again.
I also take 10mg Amitriptyline to help me sleep.
I hope that some of this may help you. :-)
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Re: Help me please.

Postby Bellatr1x » Mon Aug 26, 2013 7:12 pm

Thank you everyone, I just feel lost. I have an under active thyroid gland, coeliac disease(recently diagnoised) lichen planus(autoimmune disease where your allergic to your own skin lol) costochondritis and on fri gone I got told I have fibro. I also have borderline personality disorder, depression, anxiety and poss bipolar. This is just the icing on the cake. I've done nothing but cry since fri. It's the frightening fact that there's very little I can do physically anymore otherwise I hurt badly and feel so tired. Sorry but I'm so upset, feel like ill never bounce back :-(
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Re: Help me please.

Postby BonnGayle » Mon Aug 26, 2013 7:24 pm

Hello and welcome to the boards
it took me a few years to work out all my varying probelms were Fibro I work part time with lil ones so I know its hard , getting up and down off the floor etc once you get some meds sorted that will take the edge off but as its already been said learn to pace yourself and after a while you will see the difference it makes , Im in pain most days and maybe will be for the rest of my life but Im 36 I got a lot of life to live yet , so I plod along a little at a time I have a stick I carry in my bag in case my legs get tired and slowly but surely my lifes fitting into place :) ..I hope you find your balance soon
Fibro,PCOS,Asthma,excema and Dyspraxia ( undiagnosed because it didnt exist then )
what does'nt kill us just makes us stronger!
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Re: Help me please.

Postby Bellatr1x » Mon Aug 26, 2013 8:07 pm

Sorry for the defeatist attitude, today I'm feeling very low and in huge amounts of pain despite tramadol, codeine and paracetamol. Before I was told I have fibro I was hoping it was something that would go away with antibiotics or something and today it hit that this is forever. Sounds stupid and miserable I know but am just feeling so miserable. My hubby is and has been great, taking over most of the household chores bless him but he also works full time and I feel I'm not pulling my weight. I no I have to stay positive but at the moment it's hard. But thank you everyone xx
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Re: Help me please.

Postby lolo73 » Mon Aug 26, 2013 8:40 pm

I get just how you feel. I can't believe this is it, I just hope I can get some sort of regime to help soon. I know it isn't a lot of help but have you tried energy drinks like Redbull. I buy one which is sugarfree, it taste ok and it seems to help with the energy side of things if I drink enough of it. I tend to buy it in the discount shops where you can get 4 cans for £1, so not too expensive. My children are 4 and 5 now but like yours only a year apart and life is tough when they are as young as yours. That side of things will certainly get easier as they get older. I hope you find something that works for you x
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Re: Help me please.

Postby Bellatr1x » Mon Aug 26, 2013 8:48 pm

Thanks lolo73 I think also the fact that none of my friends have fibro so don't understand makes it hard. But people like you who understand comfort me :-) xx
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Re: Help me please.

Postby Iceskatemum » Mon Aug 26, 2013 9:52 pm

Hi bellatr1x, nice name by the way obviously a HP fan lol.

Welcome to the forum but sorry we have to meet in such circumstances , from reading others hellos I think getting the DX makes you fall into 2 camps the feels like your life has ended or the thank goodness the medics have found out what was wrong what both folk have is the great sense of relief that they aren't going mad.

It takes time to get over the initial DX ( have a look at the Stages of Grief post ) it is very helpful to get things in perspective.

I know you have 2 little one and life can be hectic but to help you and your GP try and pin point how FM effects you , try and write down how you are feeling at various parts of the day. It doesn't have to be anything fancy I bought a diary and just jotted down one or 2 words to remind me of how I was that day. Try and link it with the activity of the day if you can but I know that might be just a few words to far lol

Then when next at the GP you can bring out your little diary adn discuss how you felt adn then they can better see what meds might help you .

Meds are a long term thing for most of us , the way I see it is no one would say anything about a diabetic taking insulin so why say anything to us for our various cocktails. it will take time to adjust adn find a cocktail that works for you .

In the mean time try and rest when the little ones do . Try and get them to help tidy away thier toys etc (its not slave labout honest :lol: :lol: just good practice for later on . I didn't and now have teen & 20 somethings that are hopeless around the house !)
IF cooking dinner see if you can stretch to making enough for 2 meals then freeze one portion , then you know you have something on hand for tea when everything seems too much.

Good luck just remember there is usually someone one here who is willing to listen or talk .
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Re: Help me please.

Postby Bilko » Mon Aug 26, 2013 10:11 pm

Hi bellatrix,

Just like you I got my diagnosis recently after years of pain and confusion. It too knocked me for six as it came as a bit of a shock. I have found that that for the first couple of weeks my whole focus was on the consequences of having fibro, and it was stressing me out which made me quite ill at the time. I then realised that I was just the same as I was before the diagnosis and I wasn't really getting worse it was just the stress getting to me.

Try to change your focus off the diagnosis and back on to hopes and dreams you had before the diagnosis after all you had hope then who knows with all the medical studies into fibro going on there might be a few breakthroughs that will make our lives a bit more bearable.

Do keep hoping and don't give up

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Re: Help me please.

Postby angie68 » Mon Aug 26, 2013 10:40 pm

aww bella i realy do feel for you, i think its whenthey give you the diagnosie (however spelt) also you will find all different things happening in time also you have a lot going on, has people have said its finding how you can cope yourself, and i done that with advice from these lovely peope, i had a bad few days this weekend, i planned things then i couldnt do anything cos of my pain, i work monday n tuesday by wednesday im exhausted just need sleep :( :( and rest, my bad times are always tea timeish, so i have a cat nap, then refreshed, on a morning i cant move at all takes me about an hour...you will find how your body goes throughout the day, will be easier for you wen kiddies in nursery also so u rest!!!..sad illness this is and i dont think people take it seriously...bless ye and i hope you get better in your mind, cos sometimes its your mind that gives us pain more cos we thinking how bad the pain is so we can feel it more, we try to carry on a normal life but we cant cos our minds think of al the pain xx goodnight me dear....im on 75mg amptripyline helps me sleep but with u having children be harder for you, cos you zonked with that much but on a morning ye still feel exhausted with them, ive tried going down on them but couldnt sleep and me cramps started again..sorry for my whinge..x
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Re: Help me please.

Postby Bellatr1x » Tue Aug 27, 2013 8:16 am

Hello everyone

Sorry for the bringing down yesterday. I was so stuck and couldn't see a way out. Last night whilst tossing and turning lol I had a think, ok yes this is it forever but doesn't mean it has to be me forever, yes I am going to hurt and some days will be worse than others but they are hurdles and I've got to learn to get over them. I have only been on medication since fri so haven't even given myself chance yet. And hey guess what.... I'm not as stuck as some of those people I see down gym with no limbs (hubby in army so we see a lot of army folks) I can't remember a day when I wasn't in pain so too an extent I'm used to it, they woke up one day all fine and the next not fine. All I saying is I should count my blessings. Thanks everyone for being here when I needed help, I have some mental health issues so sometimes I struggle with coping strategies but thank you xx
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Re: Help me please.

Postby FluppyPuffy » Tue Aug 27, 2013 10:23 am

Irina, I have removed your phone number from this post, as per the reasons explained here viewtopic.php?f=7&t=17875

Please avoid posting such info on the open forum. Thank You.
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