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just been diagnosed this week

Posted , 5 users are following.

derek1979
derek1979

i have been diagnosed with fibromyalgia and im not at all satisfied that thats all that is wrong i also have shown symptoms of rheumatoid arthritis the doctor told me a bit about fibromyalgia and i know that when the body senses pain the brain perception of that pain is far greater than that of a person without fibromyalgia and i have also been told that its now recognised as a disability now and i have had it for 26 years now and am mostly bed bound every day does that mean im disabled cause i could really do with some advice on this

 

2 likes, 59 replies

59 Replies

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  • janet26165
    janet26165 derek1979

    Posted

    Hi Derek. I was told by my last rheumatologist that if I had been referred in 10 years they would know exactly how to treat fibromyalgia, but there would be no cure. That was 2 years ago when they discharged me as at that time there was nothing else they could do for me. I now only see my GP and keep taking the pills, not that they work that well and the heat has been unbearable this last few days. I have 1 finger that I can use to type at the moment. I to took a long time to come to terms with being diagnosed with fibromyalgia. I lost my job through being diagnosed, although the diagnosis came after my employer terminated my contact. I have had nearly 3 years to come to terms with it, but it still hurts sometimes, especially when I try to do something that used to be so easy. Take care and gentle hugs 😊
    • kaz_40
      kaz_40 janet26165

      Posted

      Hi Janet its soooooo hard frustrating when your unable to do the things you use to do. I am having trouble with my hands fingers my thumb wount bend and is very painful. its stuck in 1 position my earache has eased thankgoodness but Ive now got terrible pressure in my head its never ending? I would anything to have 1 good day no tablet Ive taken has helped me. Im just using hot bottles and wheat bags take care gentle hugs
    • derek1979
      derek1979 janet26165

      Posted

      we are no longer the people we used to be all we can do is accept it and adapt to it the best we can but most importantly just take each day as it comes and im here for you we all are everyone in this disscussion are here for you your not alone from your new friend derek xx
  • deb97936
    deb97936 derek1979

    Posted

    Hello derek1979, I to have had to put up with painful aches, terrible pain, swelling and even bad head turns that have me on the floor gagging and disorientated.  Brain like a swiss cheese most days.  After a MVA I was let undiagnosed etc for a few things and left to just get on.  Work for me was a not go, yet I struggled to try and get there most days, otherwise it was pulling over in my car to practically brain dead from fatigue trying to get there, and other days I couldnt get a leg out of bed...

    The 1st best thing is to get to the point you have the best info (forever evolving with the medical realms), and next best thing is 'Accepting' the medical issue, and then learning to push through most of the pain on days you can.  Learn strategys that help you to stay out of the bed at least.  Try to minimise how long you remain prone.  

    I have full blown, full body Fibro from head to toes...  It's been a long hard journey for sure, BUT I constantly push and push, not rediculously but mentally to identify what I can do, when and for how long, and how long before the issues get out of hand.  I use baths to try relaxing the body...  massage oil myself as best I can.  I'd love full body massage but no way can I afford it.  A massage at least twice a week would certainly go along way to help.  Accupuncture doesn nothing for me.  I do gently stretching and exercises in a warm pool on occasions.  Even when fully in pain with swollen legs, feet and ankles I try to get up and walk small distances round the house at least, or push to walk somewhere.  Embarrassing I know, sometimes as I do walk funny, but who cares really....At least I'm doing it.  To me the Heart muscle and lungs still need to work..   Building up the Head muscle to cope and sometimes block out some pain is another thing useful.  It takes time but folks, it can work.  It's like self hypnosis.  And it helps enough to get you out of bed to the next room or to make a cuppa, or to even get up walk to the next seat.  It's been 17yrs for me...  from days and days in bed to pushing myself and teaching myself..  I'm not reliable at all  for getting out to actual paid work, which I'd love to do, but as I still need to do something, I took up Oil Painting 5 years back..  It helps focus past pain for an hour or two here and there.  Other folk take up crafts of various sorts, helps take their minds off things. Some folk are still able to work reduced hours.  All depending on their level of pain and stiffness etc and if they have good bosses or self employed.  Also depends on those major 'flareups'.. and how often.  I'm in a constant state of pain, pushing through and 'Overdoing things', does create major swelling, stiffness and chronic pain...tsk  I try to avoid this, but it happens, I'm used to it. BUT what is the hardest thing is dealing with 'The System'... Our Work and Income system and our Health system.  NOT every doctor here in NZ is understanding, or 'knowledgable' on Fibro.  Our Govt budgets don't allow much leeway for us folk either...  It is cruel....cruel to be ignored and left struggling to live... and I mean to live.   All the very best derek1979..  Feeling for you... I hope you can find strategies to help you cope...  Healing  Hugs

    • derek1979
      derek1979 deb97936

      Posted

      thanks i have tried to stay out of bed for as long as possible but as soon as im up and tak just a few steps im back in bed with severe pain and exhaustion life for me is not great but i take each day as it comes that all i can do having it from head to toe like i do is not easy to live with and i was told there was a cure for it but the truth is how can you be cured if you dont know what the cause is as people are differant this is life for me but ive accepted the old me is gone now and have accepted im in this for life but all i have to say to this horrible condition is give me your best shot i can take it truth is i cant but at least for a few minutes saying that makes me feel a bit better i have had this since i was a young child and have found that swearing under my tongue so no one else can hear works for me as im using anger in a possitive way to help manage the pain a bit better that worked up to about 3 months ago then all hell broke loose and now nothing works and i cant get out of bed cause if i do i get exhausted after stepping just a few yards and im on my backside in agony and it make going to the loo very hard as i cant always make it in time and hate living like this but theres not a lot i can do about it just am taking each day as it comes its all i can do but how does it affect you as im iintere3sted how others feel as im not the only one and talking about it does seem to help a bit
    • kaz_40
      kaz_40 derek1979

      Posted

      Hi Derek I spent 6 months over in bed not being able to move, its no joke lieing their in sheer agony and having to rely on other people. your body is telling you to rest and not move as each time you try to move you get knocked back. when I was like how you are my gp came out to see me she got carers in the carers got me aids in like comodes I have 1 downstairs and 1 the side of my bed. Could you ask for a phone consultation or see if your gp would come out. and arrange for you to have carers in for a while. also get you some some aids like commodes bath board when the physio came out to see me he got me a walking frame walking stick. you need assessing by some one to get you some help and some aids to help you. if your up to it I would speak to your gp. hope your wife sharon is ok take care thinking of you gentle hug
    • derek1979
      derek1979 kaz_40

      Posted

      am in slightly less pain than yesterday and im out of bed but have only been out of bed for an hour but am very exhausted just getting out of bed tires me out but have accepted a few things today and am more possitive now and i see it as a curse but its my curse its not going away but ive accepted it and the guy i once was has gone now i have accepted that and it was hard but i had to accept it as for me fibro may take my body but it wont take my mentality i wont let it and im proud to accept that this is now who i am im a better person now having this as i appreciate life more and people around me my family and friends and im proud to be your frined and that has made me happy knowing im not alone and i have made new friends on here and it gets me through the day and helps me talk about my pain and today my legs feel like they just wont move and thats what there like most days so will speak to my doctor about using a wheel chair and my back has been in agonising pain so will try a back support of some kind will disscuss that with my doctor to plus wrist supports as well and see how i get on and hopefully i can try to spend more time out of bed so as you can see there is always a solution to a problem its just process of elimination and it takes time to find what works best but time is something i have a lot of
    • derek1979
      derek1979

      Posted

      plus how have you been x
    • kaz_40
      kaz_40 derek1979

      Posted

      Hi Derek  M back legs are ver painful, Ive tried to do some jobs, I am shattered now so just resting. Pain wears you down you just feel so drained all the time.All we can do is take a day at a time get through that day as best we can. We have our loved 1s to help us through it and each other on it. it takes time and adjustment from being the person you once were to how you are now. we all go through a grieving stage for the person we use to be and our old life. We have to learn to accept how we are now once we do that we can start to go forward.its hard ver hard but baby steps as they say take each day as it comes.I have a wheelchair I can no longer walk any where. I got mine from ableworld along with other aids to help me.fibro is trial error on things, we have to find out what suits us and what doesnt. its a learning curve. we cant do anything else but to plod on as best we can. on here we have each other as we know, what each other is going through and how we are feeling. as unless you have this condition you dont really understand it. take care gentle hug thinking of yousmile 
    • kaz_40
      kaz_40 derek1979

      Posted

      Hi derek I use wrist supports I am also going to get me a back support. I have a walking stick walking frame and a wheelchair. when your able to have a chat to your dr about what help support ou can get and also have a word about needing aids to help you. my gp sent ocupational therapy out to assess me. trouble is when they came out I wasnt as bad as I am now. They can provide you with a bath board rails in the bathroom extra rail on the stairs.etc.It was my physio that got me a walking frame and walking stick.the carers I had in got me the commodes 1 upstairs 1 down. also I would check to see if your area has a support group ou could attend if you wanted too. get as much help support as you can. hope your wife is ok onwards upwards keep marching on take care gentle hug 
  • Flowerlady
    Flowerlady derek1979

    Posted

    Hello derek, and welcome to the Fibro club. This is a good place to be, and very helpful and friendly. I were diagnosed with our friend Fibro 4 years ago now. And 3 months ago, were told I have ME too. Great fun! I also have an Underactive Thyroid. Today, I am in extreme pain from head to toe. And wish the ground would open up and take me through. As no amount of morphine or heat pads and hot water bottles will ease the pains for me today. I have to go and lie on the bed for a couple of hours each day as I am so exhausted. Sorry for the rant, hope you are having a reasonable day if you can. Chat soonbiggrin
    • kaz_40
      kaz_40 Flowerlady

      Posted

      Hi Anne I have ME like you and an under active thyroid, I wish I could wave amagic wand over all of us.so sorry your in so much pain today hope it soon eases for you just rest and sleep if you can thinking of you take care gentle hug
    • Flowerlady
      Flowerlady kaz_40

      Posted

      smile Thanks for your kind words. Have a good day..
    • derek1979
      derek1979 Flowerlady

      Posted

      no again another day in bed cant move got 0 energy in severe pain cant handle it have been bed bound every day for the past 3 months now but im just taking each day as it comes hope your feeling a bit better x
  • janet26165
    janet26165 derek1979

    Posted

    Hi Derek. How are you today? Hope you are more comfortable. I am still sore and had a huge spasm in my back while driving home from my Daughters house. I have done a lot of driving today as I had to take my daughter and her husband to the maternity hospital for her second scan. By November I will be grandparent to a baby boy. I am so excited it will be nice to have something to look forward to. I hope your wife is coping. Take care. Gentle hugs
    • derek1979
      derek1979 janet26165

      Posted

      i have been out of bed but am very week and in slightly less pain than yesterday but even though im out of bed i still cant do anything nothing i have tried seems to work and its such a struggle getting through each day but you guys get me through the day just as my beautiful wife does and without her i dont think i could handle this as well as i have as the pain i have been in is enough to drive you to well you know where im going with that but im not the sort who would do stupid things but when youve been in severe intense pain anything is possible but accepting its not going away does help its a curse but its my curse and as much as its depressing having all that pain im just taking things very easy and taking it day by day cause i know if i try to do to much i can honestly see myself ending up in hospital very run down like i did a few years ago i know im not the guy i used to be but at least ive accepted that and moved on and the way i look at it now im a better person now and enjoy as much of life as i can and i have so much more respect for others with not just the same but with worser conditions than me and there a lot of people out there worse off so im not greatful i have what i have but im glad its not worser and i think for the first time in years im truely proud to admit im not the guy i used to be and i need to move on and just try my best to get through each day as it comes and if i can help someone aelse along the way then im happy
    • kaz_40
      kaz_40 janet26165

      Posted

      morning Janet how are you today? hope your not in too much pain?. I tried hoovering and washed the kitchen floor yesterday, then spent the rest of the day in agony with my back, and totaly shattered. its so frustrating when you just want to get on with things and end up getting knocked back. Im soo glad its gone cooler the heat was unbearable.I bet you cant wait for your grand son to be born  in november. I know how I felt when my granddaughter was born. the joy I felt on that day was turned to saddness. my son his partner split up when she was 2. his partner wouldnt let me or my son see her. it was heart breaking.I havnt seen her since she was 2 she will be 12 this year.Hope you have a good day. Take care gentle hugsmile
    • janet26165
      janet26165 kaz_40

      Posted

      Hi Kaz. Yes it is annoying when you can't do everything you want to do. I am in absolute agony this morning. Everything aches and have an awful headache. GP says I can't take any paracetamol as I take cocodamol at night. Need to find my 4head, you just roll it across your forehead. Feel like going back to bed, but need to have a look at my oven. It stopped working on Monday night while I was trying to cook dinner. Didn't do it yesterday because of all the driving. Hope you feel better. Keep your chin up. Gentle hugs
    • janet26165
      janet26165 derek1979

      Posted

      Morning Derek. How are you today? I am in agony this morning, obviously did to much driving yesterday. Feel like going back to bed. Didn't sleep very well last night. Have been awake since 4.45, oh the joy of insomnia.

      Anyway need to sort my oven out today as it stopped working on Monday night while I was trying to cook dinner. Take care. Gentle hugs

    • kaz_40
      kaz_40 janet26165

      Posted

      Hi Janet hope you get your oven sorted out ok funny how you miss things when they stop working. Ive had 2 electrical items break on me this week,they wernt fixable weve had to replace them then off to the vets later with the dog so an expensive week for us. I use cool strips when I have a bad head or migrain, you just stick this strip of cool gel on your head, it can also help with cooling you down if you are hot. They may be worth a try for you.I would try have a rest later if your able to.my earache as gone thankgoodness, but its been replaced by pain in feet fingers hands never mind plod on. take care Janet entle hugsmile
    • derek1979
      derek1979 janet26165

      Posted

      me to im in so much pain today im surprised i havent gone mad plus the insomnia well i have suffered with that to some times i can sleep for a bit then the pain wakes me up but honestly the only sleep i do get is because the pain gets so bad it renders me unconcious and i have tried sleeping pills but they just dont work on me just do what im doing rest up and take it easy today and tommorow do the same cause i know what its like to over do it i always end up bed bound for days in agony
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