how do you get the help you need?

Hi am new here so hi to all.

was told i had fibro about two and a half weeks ago.im also dyslexic so please excuse the wording or spelling of this peice.

after a very long time (25 years ish) of thinking i was going off my head.

so sore and stiff ...... im sure you know the rest.

anyway my question is How Why where when what the hell do i do now. im lost. doctor said yeah you have fibro see you later.

What do i do where do i turn?

Im 42 female and feel like my life as just came to a stop.

thank you for reading hope it made some sence

12 Replies

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  • hi welcome to a really great sight .. the best advice im afraid it go back to Gp make a fuss and try to be brave ... i am dyslexic too so no worrys between that and what everyone calls fibro fog we in a pickel lol .. there is medication and physo and rest life is not at full stop just a hick up xx Gentle dyslexic hugs

  • Thanks and big gentle hugs back at you.

    I know i need to go back to the Gp but it just i never seam to get anywhere with gp's. i used to go and see my gp every couple of monthes or so with this pain and that pain and there was never and result to say yes we found this or that so i was told look there nothing wrong with you i think your a hypochondriac( had to look that spelling up lol) so i stoped going to the gp for a long long time .

    i just do not trust Doctors.

  • HI Ellie, welcome to the sight, so you have Fibro did your G.P. diagnose you or did you see a rheumatologist? There are lots of ideas re Fibromyalgia and it takes a while to get medication right for you etc. Swimming is good too.

    Perhaps where you live has a hydrotherapy pool that is fantastic for Fibro sufferes.

    Take care

    Hugs x x x

  • Hi , you need to see a gp who understands fibro , it takesa while to get meds sorted . What meds you on. ? . go to a differant gp in your practice xxx

  • Hi Have just moved and the practic is rubbish, i wish i could go back to my old Gp's know i know what im dealing with.

    My med's

    Escitalopram 40mg (13 years)

    Methocarbamal 750mg 3 time 2 tabs a day(3 years)

    Omeprazole 20mg 1 twice a day ( 4 years)

    tramadol 50mg 1 or 2 upto 4 times a day ( 4 years)

    Paracetamol 500mg 1 or 2 upto 4 times a day.

    I also take a large amount of ibrphofen not given by my gp.

    Tramadol i can only take in the mornings or it will keep me awake all night if taken after 1ish.

    and i can not take codine.

  • Welcome from me ellie,

    I am so sorry you have this horrible fibro.

    I am not dyslexic and i always miss spell things so dont worry. :)

    I am not sure what you do now, but you have definatly came to the right site, everyone is lovely and there are loads of advice and support on here.

    Hope you get some good advice hun.

    hugs, kel xxxx

  • Hi ellie and welcome,dont appologise for having delexia for one and secondly your gp sounds about as useless as mine,i asked to go to pain clinic,she said''u dont need that i will give u more pain killers and diazepam'',plus i fit alot and told her,she put me on gabepentin and it hasnt hepled,told her again a week later and just got back''u dont need to see a epileptic specialist as i can treat u'',shes a useless ****,i think u all can guess what that should spell.

    Please dont be in position i have been with my gp,if you aint happy either demand answers and help like i tried but failed,or change gp hun.

    Oh and welcome hun,we are all here for each other,hugs to you.

    Jules.xx

  • i just wanted to say hi, i understand your situation, my Gp is pretty useless and i am now on the last one in the practice, so fingers crossed, sending love and hugs. xx

  • Hello and welcome to our lovely forum Ellie, great to see you here! :) :)

    I am sorry you are going through a tough time at the moment. I wonder who gave you your diagnosis, were you referred by your previous GP to a Rheumatologist or Neurologist and they diagnosed you?! It seems you have been on some of your meds for a long time, perhaps they need reassessing?! It would be advisable to go to your GP, I know how difficult this can be, I experienced it myself at the beginning, had to bang on many doors etc., explain to your GP how you are feeling and that do your meds need altering to suit you better. Also if you feel you aren't managing your pain or fatigue well ask for a referral to a Pain Clinic or ask if there is a clinic locally that teaches the pacing therapy (I was taught this and it's been a tremendous help to me). This could help you arrange your days with activity, rest periods and it also encourages regular bedtimes and waking times etc., which can really help your quality of life. Obviously if you are going through a really bad time it's not always possible to pace yourself as greater rest periods are needed, but if your condition is quite stable it can help greatly. Hydrotherapy is another option, this would need a referral from your GP usually to a Physiotherapy Department at your local hospital. A local support group might help you chat and listen to others' experiences of Fibro .

    Do you have a partner or family to help you Ellie, that can be a great help too especially if they fully understand Fibro and how it affects us?!

    I hope this helps in some way, take care and once again a big welcome! :) :)

  • Hi Ellie,

    As you've probably noticed, this site is amazing! The advice and support are exactly what we need.

    I hope you feel a little better now that you know what's wrong with you, I did, it was a relief to know it wasn't something life-threatening. Having said that, it doesn't make your life any easier at first.

    When I moved back here after three years away, I saw a doctor at our surgery who told me that fibro is all in the mind, so go home and get on with it and no, I can't have a blue badge for my car because walking is best for me!!

    I went home in tears ahving got so much help from my last GP. I asked to see another doc at the same surgery and the new one was fab. He referred me to the local hospital pain clinic and helped with my meds.

    ASk to see a different GP and I hope you soon find one who will be a help to you.

    The only other thng i would say is that if you are taking a lot of ibuprofen, make sure you aren't taking any other anti-inflammatory drug as too much can cause real damage to your stomach.

    I would think if you have been prescribed omeprozole, you probably are on something already.

    Check the contraindications on your meds and just make sure. The last thing you want is to add to your health problems by damaging your stomach. After all, we have enough pain to deal with already!!!

    take care of you xxxxxxx

  • Welcome and forgive the delay but I havn't been well for a while so not been on the site much. Is there anybody you could take with you to your GP for your next appointment? I find it is much harder for them to dismiss you when there is somebody else in the room. Prefrably a man as sad to say, this still works best.

    I'm afraid your story isn't new. The medics still don't know what to do with us and we are often passed between neurologists, rheumatologists, pain clinics, etc.

    I will say however, you have had the best news, having a diagnosis at all which will help if you need to claim benefits.

    Whippet x

  • Thanks to everyone for the great advice, have been back to see my GP. not saying it went great but better than the first time. he listend so thats a start, i also have a counciler throw my carer group,(lol thats a laugh these days) i,m my mums and hubbys carer. fun lol. anyway she asked me to write to my GP and tell him what is going on and not just this is sore or that hurt, so have done that too. have not heard anything back.

    was also advised to apply for DLA have done that to but not holding my breath on that one. so anyway thanks again for all your help and advice, will prob be back for more.

    lots of love and gentle hugs

    Ellie

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