acceptance? (sorry its a bit of an epic one)

Bones, joints and muscles
1

Im relatively new to the fibro diagnoses, despite having syptoms for around 7 years.  My GP has been swapping and changing all my medications recently to try to find the combination that works for me.

(I know the medication debate is a big one but thats for another time.)

 I am currently taking amitriptyline 2x10mg at night along with pregabalin 300mg twice a day, tramadol modified release tablets 100mg twice a day and have recently swapped sertraline 200mg for Mirtazapine 15mg.  The amitriptyline and mirtazapine (which is taken at night) seem to have helped loads with my sleep problem, although its still not perfect, but the pain i am feeling on a daily basis is horrendous.  In the morning I firstly struggle to get out of bed, once I have managed that dressing myself is another struggle, it usually ends with my hubby having to help me.

What i want to know is at what point do we accept or come to terms with the fact that we cant do things we used to? I am only 36 years old and having to be helped to dress, in the shower and with other things that I took for granted before is degrading to say the least. I know every day wont be like this but I am really having a hard time with this at the moment. I've been off work sick for the first time with it because its so bad at the moment.

This is contributing to depression and anxiety which in turn, as you know makes everything else worse. Any words of wisdom would be hugely appreciated

2

You just have to try hun i find it hard im 32 and have a 2 year old and on amitriptyline 3x10mg at night and gabapentine 300mg, just keep smiling hunbiggrin

3

I do try to stay positive hun but its so hard sometimes x

4

I know hun i understand biggrin

5

I was 27 when mine started.  I am 44 now.  Alot of years of struggle and 3 kids 16, 14, and 4 to care for.  I just do the best that I can every day, and I take every day as it comes.  I think you eventually come to accept that you may have to live your life a little differently but never stop fighting.  I am always trying to learn what I can about FM and apply what I consider reasonable to my life.  Keep your chin up and keep plugging away.  You are not alone.

6

thanks for those kind words

im just feeling fed up at the moment, I'll get over it and continue as I usually do xx

7

hoefully you will hun

#

8

Hiya

  Ive seen a lot of people on these discussions saying that they are taking Pregabalin and Amitriptyline. My own gp and other specialists have tried me on both these and other similar pills but they only make me feel worse. whyme when all i see is positive results for others here. my gp said that her other Fibro patients seem to do ok with the Amitripyline. am i just one of a kind...lol. I have an app on Tuesday tosee gp so will discuss then. 

  apart from that i would like to say that when i was first diagnosed i was a total mess, the thought of having to live like this for the rest of my life and it possibly getting worse made my Bipolar really kick in. I wouldnt see anyone or go anywhere for weeks. just wanted to stay in bed and hide and sleep but even that was impossible. It took some weeks for me to comes to terms with things and even now some days im really down with the pain but i know its not going to improve and just do my absolute best each day. I know how much i can and cant do on a daily basis. i would say just to take things one day at a time and please dont push yourself. if you cant do certain things anymre then just dont. you have your family to help out. i must be honest i rarely go out anymore and spend most days in my pjs so as not too antagonise the pain. I must be honest and say that contibuting to these forums have been helping a lot, not with the pain but with keeping my mind occupied. I didnt realise how many people there are out there who suffer from Fibro.

  Take care hun, i hope i have helped even just a little

    xxxx 

9

thanks for your reply, it's nice to know I'm not alone in feeling like this.

i think I still have to come to terms with the fact that I can't always do what I'd like to, and even on the days I can I should pace myself. Hopefully this will come with time.

im currently looking at reducing my hours at work, I don't want to give it up altogether if I can help it, as I'm not sure that would do me good mentally, but I worry there will come a time when work will want rid of me, there are only so many sick days they will tolerate I'm sure.

i do find these sites helpful for the most part as you say it helps keep the mind occupied.

xxxx

10

Failing or refusing to accept your limitations increases your anxiety...and makes it worse.

When you accept what is, you will find yourself making mini goals. It's much healthier to be excited about a successful grocery trip than agonizing over how you used to be.

Get out of your head. Never think of a problem as a barrier. Say 'challenge accepted', take control and search for a solution or an answer. Like you just did by posting here.

When my mind plays a list of my problems I keep saying "If I cannot or will not do anything about it RIGHT NOW then I'm not allowed to think about it. Really helps at bedtime.

Let the strong part of you take care of the sick part of you. I treat myself like I would treat my child if he had fibro. 

11

Okay, so this may be controversial but here goes...

Acceptance is a dangerous word.  I have Bipolar Disorder and Fibromyalgia, and it's a word I've heard a lot over the years.  It has seemed to me over the years that 'acceptance' can mean 'giving up', even just a little.  And I know, I can hear the keyboards whipping themselves up in to a frenzy already, but I honestly believe this is the hard truth.

The first time I heard it was from a Psychiatrist on the day I was diagnosed with Bipolar.  "You need to accept that things are different now" as I was handed forms for various benefits.  No I don't need to 'accept' that.  I work full time as a teacher, with various senior responsiblities. 

I heard it it again in a mental institution, shortly before I checked myself out. "You need to accept that you are different from other people and will need additional help."  Acctually what they wanted me to have was a six month stay, when I could get myself better (and back to my career).

I've heard it countless times, from medical professionals and others suffering from chronic illnesses.  Always with the subtext that even a tiny part will be giving in.  I refuse to do that.  And I know what people are thinking, but yes I have been suicidial, in agony, as low as it is possible to go.

I've made some allowances, sure.  I walk with a stick when I need to.  I rest when I need to.  But that's about it.  At all other times I push myself constantly even when my mind and body are screaming for me to stop.  Why? For my career? Sure.  To see the world? Sure (I'm currently waiting to see if I've got a job in China). For my family? Absolutely. But not really.  Because I refuse to be a victim.  I refuse.  I believe my life is a precious gift.  And I will not waste it.  I haven't been given any more than I can cope with, even though I question that on a daily basis. 

I'm sorry if that seems unsupportive or controversial.  It's not, not really.  We are all stronger than we give ourselves credit for.  Even when it really, really hurts. 

Figure out ways to work with it. But don't let it dictate to you what your life should be. That's my advice. Your strength is immeasurable.  I promise.

12

'Failing or refusing to accept your limitations increases your anxiety'? Sorry, I find the exact opposite to be true, that if I fail or refuse to accept my POTENTIAL, that increases my anxiety.

13

Very very early on in 1999 the go to start drug was Amitriptyline, which I took for a while but it did nothing,  maybe made things worse....

I work with all supps and KNOW magnesium is so critical and that Thyroid, and sadly MOST docs miss it and just don't know what the old time docs knew before those crazy labs and numbers.....I went 10 years with a sluggish thyroid and doc going with the numbers.....   Many with supposedly normal numbers need HELP... I was one of them 10 long miserable years before my osteopath put me on armour, no labs nothing...he just knew.....life changed big time once on the thyroid help.....

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I have NOT given up but acceptance for me is a good thing....I continue to find new supps as things keep changing.....I don't have tons of years left here, but want them to be as healthy as I can and so I continue to find new things...

Recently we've been discussing the over calcium dosing so MANY people take......I've known this for years but it's more and more out there....mag is needed more than calcium in many ways.   Vit K is needed for the D3 to be helping the bones.....

We have good conversations on the Alternative Group and this one has been a big one... 

I thought I'd have a better life with a  hip replacement which I did in 2010, that trauma to my body really has done me in....no groin pain, but nerve damage and other crap......sick of the hurting world, but keep on until it's  no more...and I prefer to be as  healthy as I can be to my end......other stuff doesn't matter, it's all about managing my health.    J

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Alternative medicine or otherwise, fine.  But that's not my point.  My point is that we all have the power to control our own attitude towards it, and that is as powerful (or more) than any drug. I don't live with Chronic Illnesses, they exist with me.  There's a powerful difference.

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That is why I say "I deal with FM and OA and a  hip mess"   vs saying I "have"....I don't like to own more than I need to.....or I say I'm challenged with FM and OA etc.....

I've felt this way for a long time with Words and I'm much older than most of you with dealing with FM....it did not hit me until 61....I had worked and done tons of life prior to this trauma to my body, nervous system.....emotional trauma as horrific as physical trauma.....  

17

no hun i agree with you acceptence means giving in and like yourself thats not in my natrue either , i will never give in , i will pace myself but never except i wont get better, i have Aspergers syndrome aswell as fibro so i drew the lucky straw as well , even if i wanted to take meds for depression they do not work for us because its not like in you a chemical inbalance its just the way our brains are wired. 

so i have to find ways around the mood swings and sleep disturbences  it can be tough at times , but sometimes life socks it to you and you just have to suck it up or go under . glad i am not alone in feeling that acceptence is a negative word.

18

I can't imagine how hard that must be. I love your attitude though- stay strong! :-)

19

well if my great uncle could make it of the beaches at dunkirk and all the way home through spain by his own means , i can do this and  will . 

when i was growing up my parents and teachers used to have a saying .

theres no such word as cant. we was never pamperd like kids are today 

if we cut our knee it was iodin that stung like hell not bugs bunny plasters .so i suppose i learnt to get tough .

20

Haha my mom loved peroxide and boy did that smart.  And she always said uou were not ill unless you were vomitting everywhere so yet up and get to school and function.  I very much get your point.  Maybe I should thank her.