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NEW TO FIBRO LOOKING FOR HELP/ADVICE

Posted , 8 users are following.

sadie1980
sadie1980

To cut a long story short I have had pain since I had my son last July it varys from back shoulders to hands feet ankles legs hips etc they have tested me for everything all they have found was low iron low b12 low vit d and folic levels so I was put on meds for that and also zapain for pain well nothing worked so went back to doctors about two months ago who gave me 10mg of ametriptilne not right spelling soz anyway that does nothing and nor do the pain killers they told me next step is oral morph which I don't want as I have a baby well 3 children altogether the other factor is that I'm always tired even after sleep ! Is this norm of fibro ? Got docs again in a week and I need help is to what I should be asking for as they don't seem to have a clue ?

3 likes, 40 replies

40 Replies

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  • ayesha7776
    ayesha7776 sadie1980

    Posted

    Hi sadie... I am 38 n mom of four and just been diagnosed with fibro after four years of suffering almost daily. I have been prescribed prozac and meptazinol(morphine based) after nothing else worked. I have also just been referred to therapist/counselling and rheaumatology dept... all you can do is keep going and through trial and error find a medication combo that works for u... everyone here is in same place, some worse, some better but i have found since i subscribed couple weeks ago that even just reading posts and replies can help my mind set cos i dont feel so alone... i wish u luck n prayers n hope we can help support u...
    • sadie1980
      sadie1980 ayesha7776

      Posted

      Thank you so much for getting back to me this means so much I feel alone as my partner says it's a lazy persons disease! Like me crying every day is lying ! I think I've had it since I was in a car crash in 2010 but since I had my son in 2014 my 3rd and 3rd c sec after 7 miscarriages it has really kicked in like most days I just cry as I just can't look after my baby properly it's horrible as I'm normally a happy outgoing person 😔
    • kaz_40
      kaz_40 sadie1980

      Posted

      Your never a lone on here sadie we are all here for each other and will support each other through this horrid condition. fibro is a horrid condition to have it affects our entire body from head to toe. the problem we have is a part from the people that have it. no one else understands it from husbands family parents friends, some gps specialists dont. It needs to be put out their more and on the same level as ms and me. its a very misunderstood condition. people want to try living in our shoes they would soon know what it was like. makes me angry peoples attitudes towards us, especially when it comes from a loved one. take care we are all here for you x
    • sadie1980
      sadie1980 kaz_40

      Posted

      Thank u my partner is a wally lol he is 20 years older than me so he says I shouldn't be like a 90 year old etc I said to him yesterday u want to try and have it along with caring for three children cleaning a 3 storey house and doing daily shoping etc and I'm back to work this week men have no clue plus I have lots of vit deficiencies so I'm so done in !

      Massive hugs back thank u x

    • ayesha7776
      ayesha7776 sadie1980

      Posted

      My husband used to think it was in my head cos he would come home from work and i would be drained n crying n in pain but there were no signs of illness and if he couldnt see something wrong he couldnt understand it.. now though he has realised i am genuinely ill n that is because after four years of constant blood tests and dr fobbing me off a new gp started at our surgery... he listened n sent me to rheaumatology n for mri scans n xrays n talked to me and my husband explaining about possible triggers... he said people who have fibro usually find that a tragedy or shocking trauma triggers it... with me it was my father in law dying in 2010 in the year my first daughter should have been 11 but sadly i lost her at 3 months old...as he was the father i never had at same time as police reopened the murder case of a close friend 20 years ago which meant me reliving a traumatic part of my past and the death of my sister/best friend... all these events contributed to my fibro as according to dr ur mind is unable to cope as its in so much emotional mental pain that it manifests as physical pain to try help u cope... i am really sorry about ur miscarriages i truly understand ur pain... have u ever had counselling for those tragedies or talked to anyone... it will hopefully get easier as u learn to understand ur condition n i hope u will remember if u need to talk i will be here to listen as will everyone here
    • sadie1980
      sadie1980 ayesha7776

      Posted

      I never had counseling for it which I should of I was just given sleeping meds and diazepam along with pain meds for a previous car crash I drank a lot to to try and forget the pain but it always came back I thankfully fell pregnant again and had my 3rd son last July he was a twin but the other baby passed away in the pregnancy but I'm great full for my little boy I just can't enjoy him when I'm in pain I felt the pain first of all was due to no sleep but this was obviously not the case as he sleeps now thank goodness

      Thank u xx

    • kaz_40
      kaz_40 sadie1980

      Posted

      if men had fibro had children to look after and work, they would not be able to do it, when men have man flu they think they are dieing lol get your dr to give you vitamin d tablets and other vitamins you may be lacking in. when rheumatologist sent me for blood test, it showed low in vitamin d.you take care gentle hug x
    • sadie1980
      sadie1980 kaz_40

      Posted

      I'm already taking vit d and folic and iron to be honest I've been on them for 3/4 months and feel no different at all ? And yeh men lol they r usless xx

      Hugs x

  • deb97936
    deb97936 sadie1980

    Posted

    It sounds like you need some very serious 'Time Out'....No kiddies for a day or two.  Rest, sleep and lounging between sauna's, thermal pool/s, AND MASSAGE..  gentle one and doing no cooking or cleaning for that duration.  Allow others to do that.  Then see how you physically feel...

    Your young, with some tension and probably some stresses..  Can you at least take time out, Hot bath soaks, massages and some good rest and sleep?

    The last thing you need is for issues to 'turn into a Fibro condition'...if you haven't got it already...

    Feel for you sadie...  Big hugs..

    • sadie1980
      sadie1980 deb97936

      Posted

      I wish I could have a break my mum normally has children once a month so me and partner can have a night away which I do relax a little but I feel bad as I'm just tired all time and my partner wants to spend time and all I wanna do is zzzzzzz lol if I could I would go to bed at 7pm every night
    • deb97936
      deb97936 sadie1980

      Posted

      Exhaustion is not good...   and you cannot be pushing yourself so hard.  You should really ask if it were possible to have a really good quality 'time out with your hubby'..  You guys are young, and you need that time out to 'Sleep first for a day or two, and then you and hubby have your quality time.  He needs you a little more refreshed and focused on him 'even for a few hours, a day/a night'... together.  Maybe if it could be hubby that can learn to give you a good massage!  Sleep, and then return the favour.. It's a lovely thing to be able to look out for each other this way. It's a mental relaxing connection as well as physical time out.  Try and find a way to have that time out.  One night isn't really enough, as you say you then just want to sleep.  The fact that you said yourself that you feel bad as your tired all the time when your partner wants to spend time....!!!    It is very easy to slip into a zone that you don't notice how much time slips by and how much partner is feeling it.  

      You don't want to crash and burn with Exhaustion.  I have been there and done that, it's not good.  Your body shuts down, and you sleep for days on end without waking.  I never woke up for days, when I did I went to the loo, back to bed and slept again for 48 hours without waking.  Incrediable stuff!!   I was shocked a body could do that.  I was so grateful to have a good friend and neighbour back then to look after my young daughter.  After many many long years we are still close friends!

      Well it's nearly 1 am here, I'm going to take half a sleeping tablet to aid sleep.  I had to last night to.  I rarely use sleeping tablets but it does help to get sleep when I'm in dire need of some. The body relaxes better to sleep..  

      All the best, Nite xx

       

    • sadie1980
      sadie1980 deb97936

      Posted

      Night night thank you so much for your suggestions I will ask him about the massage and see what his answer is xx
  • diagnosisisalie
    diagnosisisalie sadie1980

    Posted

    First of I am so sorry for your loss. I am for sure not a doctor, but I am a mother of 3 teenager and ,kids can drain you real fast if they are 2 and playing or 19 and out on their own. From what I gather it sounds like FIbro, but as I research I am finding that "Fibro" could be given as a diagnosis but it could be a zillion things as the symptoms correlate with many things. I suggest you keeping a journal of new symptoms, from pain to what your loved ones our commenting on to visual things. I just got a new gp as I got rid of the time waster and handed the new gp a 7 page health bio that had all of my specialist and when and how they occurred. As I sat there and the gp scanned it , she has ordered 10 test and many more to come she said. Then began to question my splotches on my hands that no one has ever noticed(medically). I suggest  accupuncture only because I hate anything that canchamge me chemically in thought. Also buy a messager, it helps. Take hot baths. I am currently on Tramadol( I dont think it worked so I dont take it), Lyrica( it is horrible, helps a little), and Cymbalta( can't tell either way). Everyone is different for what works for them, I was just given new meds but didnt pick them up yet and dont know how they work. Best of Luck
    • sadie1980
      sadie1980 diagnosisisalie

      Posted

      Thank you for your reply I was due to go to doctors on my he 15th but called today for a appointment tomorrow as the pain is that bad and I can't take anymore enough is enough so they best do something xx
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