1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

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

Posted , 11 users are following.

CrazyDaisy88
CrazyDaisy88

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

0 likes, 30 replies

30 Replies

  • andrea03046
    andrea03046 CrazyDaisy88

    Posted

    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
  • kari0801
    kari0801 CrazyDaisy88

    Posted

    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.
    • CrazyDaisy88
      CrazyDaisy88 kari0801

      Posted

      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

  • alig39
    alig39 CrazyDaisy88

    Posted

    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 

    • CrazyDaisy88
      CrazyDaisy88 alig39

      Posted

      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

    • joy47826
      joy47826 alig39

      Posted

      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.....

  • nitropilot
    nitropilot CrazyDaisy88

    Posted

    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. 

    • Smiler1981
      Smiler1981 nitropilot

      Posted

      '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.
  • Smiler1981
    Smiler1981 CrazyDaisy88

    Posted

    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.

    • joy47826
      joy47826 Smiler1981

      Posted

      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

    • Smiler1981
      Smiler1981 joy47826

      Posted

      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.
    • joy47826
      joy47826 Smiler1981

      Posted

      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.....  

    • tiswas24537
      tiswas24537 Smiler1981

      Posted

      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. 

      rolleyes

      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.

    • Smiler1981
      Smiler1981 tiswas24537

      Posted

      I can't imagine how hard that must be. I love your attitude though- stay strong! :-)
    • tiswas24537
      tiswas24537 Smiler1981

      Posted

      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 .

    • kari0801
      kari0801 tiswas24537

      Posted

      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.
    • tiswas24537
      tiswas24537 kari0801

      Posted

      well it certainly gave us a back bone didnt it. with out that kind of up bringing i would have crumbled with this fibro ages ago .something keeps me fighting and hopeing my fight is not in vain.whats the alternative 

      just give up !

    • diane65123
      diane65123 Smiler1981

      Posted

      I probably wouldn't have agreed with you yesterday about acceptance being negative but today I do. I have been reading an article by a lady who claims to treat fibromyalgia and she said if you accept your condition it immediately limits you and you give up. We can improve our lives and our health and we musn't just accept it and give up but it's hard for people to take that on board when they are having a bad day. But we must remain positive. I am going to give this lady a try, she is a physiotherapist and nutritionist. She does combination therapy and gad some good reviews. I will let you all know if it helps.
    • Smiler1981
      Smiler1981 diane65123

      Posted

      That sounds good Diane.  I'm not saying it's easy.  In fact, it's the hardest thing in the world. But I really do believe it is the key.  The moment I 'accept' that Chroinic Illness can alter my life is the moment that I may as well give up.  Best of luck to you.  Stay strong :-)
    • tiswas24537
      tiswas24537 diane65123

      Posted

      i agree with you hun you go for anything that sounds like it will help

      i always said if someone said standing in a bucket of horses droppings would cure me i would give it a go, i hope you have found your solution .

      i shall be starting on the programme in the next couple of weeks just got to get the spare room sorted so i have some where with out interuptions to do it. so i think good luck to us both ,and lets rock on hun to better health smile

    • nitropilot
      nitropilot diane65123

      Posted

      I guess it depends on your personality. I accept it...for now. There is a huge difference between acceptance and defeat.
    • nitropilot
      nitropilot Smiler1981

      Posted

      You know the prayer...accept the things I cannot change & the wisdom to know the difference? Accepting or acknowledgement isn't defeat. It's a starting point. I see the opposite of acceptance as denial, although another antonym is refusal. 

      Don't think it really matters. It boils down to each person and what motivates them. I accept it's there...for now, but refuse to let it destroy me. I'm motivated by that. Denying that it exists and putting stress on myself to be a non-fibro person is counterproductive for me. Others may be different, using the 'fake it till you make it' approach.

      As long as we are actively working toward a good  & healthy life, it's just terminology.

    • joy47826
      joy47826 nitropilot

      Posted

      I agree with that acceptance prayer.....have it on my refrig....and it's not a defeat attitude....it would take some kind of miracle to reverse this older body and I know that....but I work daily to keep it going as long as I'm here.

      I have been in Science of Mind philosophy since the 80's....and it's all about mind change.....whatever works, but too many struggle,  In some denial...

      Oh, I'm no expert but know what works in my life.   Joy 76 US 

       

    • nitropilot
      nitropilot tiswas24537

      Posted

      Lmao. I hear you!

      I just signed up for that. The first few chapters are free which is nice. And the rest is a money back guarantee.

      I also just saw something about DNRS. Going to research that too.

    • Smiler1981
      Smiler1981 nitropilot

      Posted

      Of course acceptance isn't defeat in its true definition. It's a really positive thing. And I do not deny that either of my illnesses exist- that's just not possible. I was just saying that in my experience people accept too much, leading to defeat. The two shouldn't go together, but they all too often do.  Everybody's approach can be different, as long as it's healthy. I can only speak on what I've found :-) 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.