crying threw relief of finding other sufferers ... i kind of feel a little normal again

Posted , 8 users are following.

Hi im new and i would just like to say hello. Ive been suffering for 4 years and was told in march i had fibro. Ive been taking it all in since then, i look back and see it all makes sense .... believe me when i say this at times i thought i was actually dying. Ive just sat right now and broke my heart that this is real and other people are suffering to... im not alone. Ive felt for so long a whole world of emotions. everyday is hell for me im sick of the struggle to try to keep a life i once had my normal happy life thats been stolen from me so long ago. I havent had any support for a long long time and hope this is my turning point. my pain this past week has been so bad that ive considered giving up the fight its sounds daft i know. Im so thankfull that ive found this site.

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  • Posted

    Hi Luaraloo,

    i was diagnosed in Decmber and im still very overwhelmed, however i am only a teenager, there are so many supportive people on this website, ive never felt so much support than whenever im on here, this is because you can post a discussion asking for advice o something hats happened and theres always someone who knows what it is, if you eve want to talk, im here

    Charley x

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    • Posted

      Arhh bless you thank you charley im all out of talks with my partner and friends it falls on deaf ears i dont blame them to be fair slowly and surley they are dwindling away and im becoming more isolated partly because i stuggle physically and mentally and partly i can only presume they are sick of hearing me complain. Im sure ill be popping on alot thank u x
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  • Posted

    Welcome luaraloo.  It takes time to adjust to the "label" but remember you are still the same person you were before the diagnosis.  The only help my consultant could give me was positive mental attitude otherwise you will never get up in the morning.  Daft thing to say to me but it has stuck. I live by the "tomorrow may be better".  I changed lots of things like being able to say "No" to people which is something I would never have done before. Take some me time, long soak in bath of epsom salts listen to a talking book or some music and relax - stress makes our fibro sprite wake and create havoc.  Your fibro is different from everyone elses so it will take time to know what you can and can't do. Believe me we have all been in the dark place where there seems no light at the end of the tunnel but there are some great folk on here to help, listen or have a laugh with.    Have you been offered any CBT?     I went down the alternative therapy route as conventional drugs had awful side effects or me but they may work for you.   Remember do not suffer in silence we are all here to listen.

    Take care

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    • Posted

      Hi maggers thank you for your reply. Ive not had much of a converstion with my consultant, since my diagnosis ive been dischargedd and havent spoken to her. She changed some of my medication and said i should see my gp in 3months fo a review which i have with not much look. What is cbt ? Im on a lot of meds 133 pills aweek to be exact and they just are not working for me ive as to swap with no look. My gp is evan reluctant to give me what my consultant prescribed as he claims im too young and excersise should be my pain relief.im kind of lost as to what to do hence ive been feeling so low and pooey i shall take you words to bed when i lay my head tonight and hopefully they play a very stong part in my wellbeing xx
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  • Posted

    Hi Luaraloo, I know exactly how you are feeling, I have had several days of despair. It sounds like you need help, do you have access to a pain clinic or a nice sympathetic doctor. I have found Cognitive behaviour therapy has really helped. If you can get a referral to a  psychologist they can teach you really useful techniques for getting through the day. As for medication that is a personal choice, for some people it works a treat. Medication is something you have to explore and takes patience, to see if any of the drugs help you. 

    Good luck but don't despair there is help out there. 

    All the very best

    Meg

     🌺

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    • Posted

      Hi meg thanks for your reply am in pain everyday but have flares that last for weeks and everything goes or at least im linking it together last week i spent it with constant head aches vomiting ear aches tensed muscles in my shoulders and bsck that are constant locking taking my breath and creating panic attacks stabbing pains in my armpits and tingles down to my fingers i hadnt bathed all week as my partner was away and when hes not there i can get out the bath (vile i spent my week a stinky moo believe me ) to top it all off when the pain is at its worst like this i have no control of my bladder i dont evan get why it just dont work like the 'hello warning signal has gone' my heads just wishy washy and cant focus at all my hips and knees burn and below them is stsbbing and aching to the point i struggle to walk my body feels so old . Im cuurently taking 133 pills aweek and feel its just not working for me i shall be visting my gp with what youve said thank you again x
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    • Posted

      Good move Luaraloo you shouldn't be suffering so much, with out getting help. Please tell your doctor all the symptoms, it sounds like you medication regime needs a good rethink.

      Do you have a shower, so much easier to get in and out of? I find getting in and out of a bath, is tough on my back, knees and hips. Even though a magnesium bath is soothing, I take supplements instead.

      I know that buring feeling too well, I am attempting to control it through diet, gentle exercise, CBT and experimenting with different medications. I think all help somewhat.

      Best of luck, hang in there

      Meg

       🌺

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  • Posted

    Hello luaraloo,

    Totally agree with others have said here. There are ways of managing this, whether it be drugs or other. Positive mental attitude is very important, tho very hard. You will find your 'new normal' at some point. This is a great site, so keep posting and there will always be someone here to help you.

    Take care, Anne

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  • Posted

    Welcome luaraloo..I'm sooooo glad you found us....hope you find us all most accepting and welcome..we are all very empathetic naturally...I've been diagnosed for over 23 yrs now....just try to remember it might be be a rotten blow..but we are all still the same person inside..try to be as stressless as possible as stressless is the key to living with this..try and get good supportive people around you..you definitely need it..they empower you soo much...get as much information about Fibro as possible usually there are good authentic sites on google-be careful to get a real one.,then make some printouts and give it to non supportive family/friends..it will help them understand, we can't really blame those closest to us fir nit understanding if they don't have the knowledg, they can't possibly feel our pain...but they can know it's real...have a lovely day and be blessed..:-) xxx
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  • Posted

    Hi Luaraloo,

    I get you, was diagnosed this past October & it'd been a struggle & just plain frustration that my old life is gone...but I always suggest getting dime counseling it has helped me so much...

    Hang in & know U are Not alone,

    Valerie826

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    • Posted

      Ithankyou valarie826 for your reply im going to vist my gp to see if i can look at counciling untill this site i hadnt known that there was so much support and diffrent things to try xx
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    • Posted

      Hi luaraloo:

      We R All here for U. Its not easy to live in pain & not get it either...I have two counselors one @ Hopkins hospital & one local, & they both communicate w/ each other ...We all need to vent, & support one another...

      Keep your Smiles on & things will shine better...

      Smiles & Giggles,

      Valerie826

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  • Posted

    Hi Luaraloo Like you I suffered for many years, last year I was diagnosed with fibro. I thought I was going mad with it all. Im glad Ive now been diagnosed but the every day struggle is hard and on those a round us especially my dear husband. I can understand you wanting to give up with life, I had a really bad day yesterday and that thought crossed my mind to. thank goodness I found this site where their are fellow sufferers who know what were going through and how we are feeling. as to be honest most people have no understanding at all and dont care how your suffering, my own family and inlaws included. we will all help surport each other. I have been researching fibro I have also purchased some aids from able world to help me. if you register with them some things you pay vat on some things you pay no vat on. my husband filled my form in for me he put on it fibromyalgia. Ive purchased a few items to help me. when I was bed ridden lasy year from june to december unable to walk and very ill. I had to have carers in. my gp made sure I had aids in place to help me which I have still got. iI have 2 commodes 1 up 1 down walking frame walking stick bath board perching stool to sit on in the kitchen. get as much info as you can and get things that will make your life a bit easier. thats what Im doing. gentle hugs take care x
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    • Posted

      Hi kaz 40 thank you for replying sounds like weve felt the same at some point or another. And it sounds like you have had a real rough time too. Do you find certain things trigger diffrent symptoms with you ? Im going to look on that site now xx
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