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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

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  • Bee70
    Bee70 sadie1980

    Posted

    Hi Sadie, poor you...unfortunately, fibro varies from person to person. Have you been referred to a rheumatologist? That is the first point of contact to confirm fibro. It's not easy with children, I understand how you feel.  I have been suffering for over 20yrs but only diagnosed Aug 2014.

    Getting stressed will not help need to pace and deal with a day and a moment at a time. Also ask your GP to refer you for CBT (Cognitive Behaviour Therapy) it's a helpful to mindfulness of the thought process.

    Gentle hugs and many others on this forum will give you support and advice. wink xx

    • sadie1980
      sadie1980 Bee70

      Posted

      No not yet she keeps saying she will but still hasn't she said last time that's it's fibro but after a year of crying in pain most days you would think that she would do something sometimes it's that bad I think I can't do this for the rest of my life as I'm only 34!
    • Bee70
      Bee70 sadie1980

      Posted

      I totally know how you feel, it's frustrating when drs don't listen.  I have had that for over 20yrs.  You have to keep persisting that you would like to be referred. My pains started when I was 23 and now I am 45.....after finally being diagnosed with Fibro, I came to terms with it and have accepted it. This has made me stronger as a person and have since finding out had CBT therapy and this really helped me.  I don't take any conventional meds but Feb 2015 started on herbal ayruvdeic meds, although they are not pleasant to take and it also takes a while for them to work depending on the pains.  I will be reporting back soon on this forum of my experiences with ayruvedic treatment.  At this stage all I can say it's taken since Feb 2015 til now to feel that some of my pains in my shoulders, neck and back have reduced.  The only issues I have at the moment is tiredness and lack of sleep, but I am sure that this will all soon change.

      I have adopted the philosophy of one day and moment at a time and learning how to pace my daily life.

      Gentle hugs wink xx

    • sadie1980
      sadie1980 Bee70

      Posted

      Thank u bee I think I have to try and take each day as it comes I just dread waking to see what pain I'm going to be in on that day I even told my partner if they can't help sort pain etc I will not be around to put up with this for the rest of my life no way !
    • Bee70
      Bee70 sadie1980

      Posted

      This forum is a godsend to us all.  I joined this forum in March 2015 and have come across many inspirational and helpful people.  You are not alone and we all are here for the same thing.......Loved ones don't see what we go through daily but the people on here share their own experiences. 

      Don't give up and chat with us and we will get each other through our daily battles.

      Don't look too much into the future, but one day at a time. Today you could be feeling low but then tomorrow will be a totally different experience. Do look into CBT and give it a go.

      Positve and gentle hugs from ME to YOU wink xx

    • sadie1980
      sadie1980 Bee70

      Posted

      Thank u I'm so glad I've found this forum it's already made me laugh and cry I have also joined a group near me so hopefully I can start meeting people who are going threw the same thing ! I won't give up just on bad days just makes me want to especially as I can't do much for my one year old xx
  • christine26761
    christine26761 sadie1980

    Posted

    Hiya, welcome sadie...this is what this drug does for me..maybe you need it increased..it certainly does  take some time for it to get into your system and start working well. But the dosage is really important some take higher than I do..probably some take less..although I haven't read that I don't think, also:

     Amithriptilyne .  is a Nerve-pain blocker..with sleep assistance and minor anti-depressant)..

    Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...16yrs down the track..have to be woken up in the morning..but once up and about I'm just fine.....when I was first on them I was like a zombie..but it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx

    • sadie1980
      sadie1980 christine26761

      Posted

      Thank you for your reply it's so hard to get any where with doctor I've been in pain for a year crying most days to be honest it's like she doesn't no what to do about it the ametriptilne just make me feel dirty and moody like I could kill someone lol so at the mo I'm just taking zapain and diazepam but nothing helps I'm in pain daily some days I can barely walk here are some of my symptoms

      Stiffness

      Tired all time even after sleep

      Pain if get poked

      Hate loud noise

      Periods last ages

      Puff eyes

      A stone put on

      Confused can't get words out

      Headache

      Numb legs

      Most of that is daily I'm only 34 and can't see myself dealing with that for the rest of my life

    • christine26761
      christine26761 sadie1980

      Posted

      I'm no doc, but it certainly sounds like Fibro...I thought I had a tumour on the brain when I first got what is called " Fibro Fog" ..poor you..your sooo young, however we all probably had this Fibro from a younger age..once we were diagnosed with it...it seemed like a lifetime with it fir me..and it was only 20 years..be blessed sadie..one day at a time...as Kaz always say; onwards and upwards, gentle hugs from over the seas....:-) xxx
  • kaz_40
    kaz_40 sadie1980

    Posted

    Hi Sadie Dr should refer you to a rheumatologist for a proper diagnoses. everything about fibro is trial error its finding what tablets suit us and what doesnt. if tablet isnt working for you then you have to tell your gp so they can try you with something else. your gp can refer you for cbt a pain clinic. some areas offer free accupuncture for 12 weeks, some areas offer hydrotherapy for so many weeks. get as much help support as you can and aids to help you. your gp can advise on what help their is for you. also see if your area has a support group at all. Tiredness pain are two big factors in fibro its something we all suffer with.write everything down so you dont forget anything when going to see your gp. fibro is bad enough to cope with when your on your own but even harder when you have children. take care gentle hugs 
    • sadie1980
      sadie1980 kaz_40

      Posted

      Thank you for your reply to be honest my doctor is rubbish she keeps saying she will refer me but doesn't so I have appointment in a week so I will be saying she needs to do something as I can't take much more it's horrible this is my daily pain

      Stiffness

      Tired all time even after sleep

      Pain if get poked

      Hate loud noise

      Periods last ages

      Puff eyes

      A stone put on

      Confused can't get words out

      Headache

      Numb legs

      I can't do baby's popers on sleep suit I can't carry him down stairs thank god I have a very helpful 15 year old but I feel he is becoming more of a carer than a son

    • kaz_40
      kaz_40 sadie1980

      Posted

      all are fibro symptoms the only 1 Im unsure about is the long period. I went through a phase where I was loosing for over 3 months at a time. I would have a word with your gp. would you be able to see another gp or even change to a different practice. its amazing how so many drs dont have a clue where fibro is concerned. having a good gp is esential to us with this condition. its normally a rheumatologist that diagnoses fibro, thats when all other tests have been done to rule out other conditions. paceing our selves is important as if we dont we can sometimes end up in bed for days or a week or more. stress worry makes our pain 10x worse. I cant take anything for pain I use wheat bags hot water bottle take care gentle hug  
    • sadie1980
      sadie1980 kaz_40

      Posted

      I've had scans on my womb and everything is normal so there unsure as what's going on I feel like I'm getting no where it's so depressing but when I go back next week I will be putting my foot down I'm also back to work Friday which I'm totally dreading! I'm scared x
    • kaz_40
      kaz_40 sadie1980

      Posted

      loosing as you are wount be helping things,, that needs to be sorted out. I had the same problem nothing was done for me it finally sorted itself out. I wish you had got a better gp than you have. you have 2 issues going on the fibro and the period both need sorting out seperatly. where working is concerned their is pip and e,s,a. Im not clued up on benefits but I think you can still get pip and work especially if you went to part time hours. Alot of us have had to give up work because of fibro. those that do work struggle. just take a day at a time where work is concerned see how it goes. if you cant manage it look into what benefits you could claim. none of us have liked doing that claiming anything. but to survive we have had to.. we are here for you will support you help if we can. x
    • sadie1980
      sadie1980 kaz_40

      Posted

      I'm only doing 16 hours a week but I'm a payroll admin and I'm so scared I'm going to no to mess the pay up especially working in the afternoon as by 4pm I'm a zombie and I need sleep x
    • kaz_40
      kaz_40 sadie1980

      Posted

      I would see how it goes, but I would look into claiming pip if it is you cant carry on working. also ask for your gp for vitamin d tablets I was low in vitamin d so gp prescribed vitamin d tablets for me. x
    • Bee70
      Bee70 sadie1980

      Posted

      I know how you feel with baby poppers on sleep suits.  I have two boys with a seven yr age gap. When both my boys were around 18mths old, I no longer could hold them, pick them up, and this used to get me down, but although these years were difficult and having no family support, even from my husband, as he didn't understand my pains.......I can say my youngest now is 11 and my eldest just turned 18 last week, I have learnt to take care of ME through my CBT and have spoken with my loved ones about Fibro and they have now become more supportive towards me.  Some days they do need to be reminded but I feel since knowing about my fibro and my husband now is educating himself on fibro, it's a great weight off my shoulders.

      I have learnt to say NO when I have no energy and I don't feel guilty about saying NO either.  We have to train ourselves and it will take time.  Keep a strong and positive mind and the rest follows on.

      Take care wink xx

    • sadie1980
      sadie1980 Bee70

      Posted

      I have a 1 year old a 11 year old and 15 year old he is a god send but don't like to put on him but he understands my partner is rubbish thinks it's just laziness which obviously it's not but trying to explain how I feel is hard especially when I have so many things going on it looks like I'm a hypochondriac lol x
    • christine26761
      christine26761 sadie1980

      Posted

      Hiya sadie..often hubby's/friends/family just don't understand...it does take them a bit of time...I googled lots of good info and git some from the doctor and  gave it to them and asked them to read up if they were interested...it really did work...the few who didn't bother..I stopped bothering with...i just didn't want to feel any worse being around them....it took a few years..but they came back quite sorry...they might be sad but your not bad..it's a healthy boundary...be blessed sadie..have a lovely day..:-) xxx
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