fibromyalgia

i was a size 12/14 know going into a 16/18 , i hate it all because of what i have been told i have , and am fed up with being past around by docters and the nhs , as i have gone though so mcu in 20years of pain and to be told i have this , if feels like its killing me and i cry on the inside its hard to go though this and have know one who understand me

48 Replies

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  • HI ellenmarie,

    I was the exact same size and i am up to a 16/18 more 18 at the minute and it gets me down. I think its my meds that are to blame so its either come off them and loose weight and be in agony or stay on them and be this size. Its hard isnt it and i know exactly what you are going through.

    Everyone on here knows exactly how you feel and they will help you and just know there is always someone on here so you should never feel alone.

    hugs, kel xxx

  • thanks kel , for ur lovely message , yes i agree its med life change alright , but its also down to the docters to support us , but i feel they look at use as its all in our head , sometime i hate going the docters as they just give u pilll and more piss i hate it , i have so many to take i forget and it makes me feel even downer , but i try and pick myself back up , so thank u again , ellenxx hugs back

  • hi kel thanks honey , yes ur right i would have to stop my med's to lose weight or not eat but like u it wouldn't help honey , as u said , i only come on here know and then , when am feeling low thats sad i now but , i dont have know one to talk to only everone on here know and it does help to know we are all going though it , as i dont like talking to my family about it any more , the just thing get over it , and it upset me as i find out 2 year ago to i have adult A.D.H.D . its funny really as am me and can not be now one else , but thanks for ur support honey all the best ellen xx :)

  • I think we all mustve found it disheartening to find out we have this horrible thing with no cure. But at least it has a name. I know that I put on weight really quickly when the pain is bad and I can't do exercise, but try and do anything active in the moments that you feel ok. They do happen sometimes and its worth catching them. Exercise can release endorphines into your blood stream which make you feel happier and God knows we all need some of that! If you can't exercise fully then try doing the smaller stuff, weeding the garden, hoovering the carpet...or even some gentle stretches to ease the muscles. Keep strong, this illness doesnt kill you it just makes you feel like it is...try and keep going as strong as you can and fight it, life is still worth living for the stuff that can make you smile!! :)

  • hi just to say thank , ur right life is for living and belive me i try ,but its when u dont expect it is when it happens the pain hits u like a brick on ur head , yes the headace brakes in and numness to my spine from the pain and i pop my pills like a good girl but do the help no , so i feel like what ever they give me dont take the pain away , so thankyou for caring ellen xx

  • this is such a sweet message i love reading , i just want to say i do my house work and it does help ur right and i walk my dog to , i have took up swimming witch i must say help's , as this relxa's me , you made me smile many thanks :) x

  • Same here Ellenmarie.

    My weight gain is my biggest part of depression, always has been as i hate it when i am this big.

    Its a vicious circle though, with Fibro you cant exercise as too much pain, so you gain weight then you get depressed and that causes the fibro to get worse then you eat and cant exercise again.

    We all understand how you are feeling here so please dont feel alone. :)

  • i just want to say all these messages from u and eveyone else help me more then anyone has , to know there are others just like myself , so my heart saids thank u to u and all who read my coments about myself ,:) and am smiling reading all this mail :)

  • hi plese dont get upset if you have put on weight it is obviously your meds and lack of mobillity so dont worry but you must do things in your own time if you want to lose weight you must do it when you are ready

    i have actually gone from a 10 to a 6/8 but thats jus me have you had your thyroid checked as if it is underactive that can cause you to put on weight my friends husband had this he went and his was underactive he was put on meds and now he is under conrol

    love diddle xxxxxx

    ps you are who you are and we love you and so do your family doesnt matter what size you are your still you bless you love diddle

  • hi diddle , yes i had a test done for the thyoid it came back ok , i have bloods done evey month and urine test as well as i have high levels of protean in it and there giving me more pills it dont stop there i have high bloods on pills for that ,its one thing after another , but am greatfull i find this sight off a friend off facebook , so thanks to her i found u all , and it do help to know am not alone ,many thanks ellen all my love to everyone xxxx :)

  • You are not alone EllenMarie, we can all empathise with you on this site. I have gone up at least 3 dress sizes in the last year or two and it does get you down.

    I know its no consolation but we all go through the same thoughts and feelings you are going through and I hope things improve for you real quickly. Take care, Love Angela xx

  • thanks for ur kind reply , i feel blest to know u all on here that reply to me , its heart reding to read , i could cry from the thought of u all that are going though the same and many thnks real from my heart to u ellenxxx :)

  • thanks angela for ur lovely reply honey it help knowing others out there understand take care to honey :) xx

  • I am the same my weight really makes me depressed . It's a losing battle pain and be slim or fat on the tablets. I also have a under active thyroid witch doesn't help. Like everyone has said we do understand how you feel take care xx

  • am running out words to reply on here to u all , just say thanks again and i know i

    can come on here and spil the beens to how i feel , so u honey for ur message of hope :) ellen

  • thanks honey , its does help that we all talk to each other on here and help the days go by , wish u well xx ellen

  • omg i am the same this last yr i have gone from a 12/14 to 16/18 more on the 18 side :( being of low self-esteem it makes everything worse and now i hate myself sorry just really down with it all even my little boy says ur fat mummy :( he doesnt mean to be mean but it still hurts :( my partner is amazing and says he loves me for me but i struggle to understand because i dont even know who me is anymore the other day he said he would give up any of his limbs for me to be the way i used to. Cant believe i used to do Irish dancing,gymnastics,running and social activities and a nursery nurse but now i am mostly housebound.

    gentle (((hugs)))

    xx amanda xx

  • hi amanda , yes honey my heart goes out to u to , all we do is try and smile and look happy for the one's we love , am not as lucky as u , ur husband hold ur hand all the way my heart goes out to him for being the loving husband and father he is ,, chin up ur not alone am here know , so we can pull each other up and tell each other how we feel , i so care about others be4 myself but on here its like one big family holding each others hand , so my dear thankyou ellen xxxx :) .... :( smile on smile off lol.....

  • It just means there is more of you to love and you have extra cushioning. I find if I do my hair and makeup it always makes me feel better even though sometimes I really can't be bothered. I to am a 16 - 18 and proud of it. Big can be beautiful and I bet you are beautiful x

  • well wat can i say to that , is yes i am beautyful and so are u as u try evey day by put ur makeup on help ur right , so i smile just because u made me thank you my new friends on here xxxxx :) smile

  • Hi Ellenmarie,

    I went up to 10st 10lb last year, huge for someone 5' 2" was in despair, weight too heavy for me to carry around then had flare up of fibromyalgia, hard times but now I am back to 8 1/2st. Take it a day at a time, do what you can within that day, no more. All heavy housework may not be attended to but your priority is to get yourself in a managable space, therefore, slowly bring yourself back to where you feel as if you are functioning somewhat, these diseases have highs and lows as we well know, do not look at the big picture it helps if you just do your best on a daily basis.

    wishing you well

    flyingeagle

  • many thank again word can not put on here how i feel about all these replys of hope and happyness, sad , good, the ugly .of all this pain makes it better by knowing u have this site to come to for support thanks again :) smile

  • Hi Ellenmarie,

    I think a lot of us can empathise, I can feel my trousers that were too big for me actutally fitting me right and that's saying something, feel real flabby really, won't say what size I am, but an 18 sounds right.

    I think it's partly down to me not being as active, and also like a few biscuits after my dinner, which I never did, but you do look for some kind of comfort don't you.

    Life is hard work when you have fibromyalgia, and accompanying ailments, pity there's not an exercise class specially made for us, would'nt that be great, how slow would it have to go though, sometimes I do stretches if I'm too wound up, or too much pain, it does seem to ease it a bit.

    The only support group that I see for us in Belfast is the far side of town, I live near Lisburn. take care anyway and don't you worry yourself xxxx

  • bless u all out there to one and all it help me to understand how u all are to and am not alone , i wish u all happy days to come not.... lol but we can hope my heart, is here for me and u ellenxxxx :) smile

  • You're very sweet Ellenmarie good night and to all of our fellow fibro sufferers, take care xxx

  • i didnt get to say night to u , but good morning and thanks for ur sweet word it put a smile on my face xx

  • so many of u reply to my cheers everyone , woke though the night feel sick heahace's for 3days know ,pill popping every hour but it dont hlp ,so know am sitting on here to take time away from the pains by reading mail from u guts , all i can say is pain pain go away come back another day ,it a saying lol....it keeps me smiling ,hot flusher like theres no 2mora , back all num lovely start to our day ,well hope ur day is a good day to u all i love u guys thanks for being here xxxx ellen :( x :) smile on smile off xxx

  • hunnie at my heaviest i was 17 1/2 stone and went down to 11st 2lb ive since put 2 stone back on since being put on gabapentin for my fibro i too have an underactive thyriod and well im a size 14 and do get very down so hope now you dont feel so alone we are all in the same boat hugs hunnie xxx

  • Hi, I just joined yesterday and have been reading lots of your questions and answers. I've been diagnosed with Fibromyalgia since March 2011, but have been suffering from fatigue and pain for at least 10 years. I take 600mg of pregablin (lyrica) for the pain, 50mg sertraline for the depression and anxiety and 10mg of amitriptylene which works with the pregablin to get you a pretty good nights sleep. I take 450mg of the pregablin and the other 2 meds at 6pm each evening. By 9pm I am feeling quite woozy (in a good tired way!) I have found it is important to take these a good few hours before you go to bed, otherwise you find yourself lying awake in pain for at least 3 hours waiting for them to do their magic!!

    I also do stretches before I go to bed so that I don't stiffen up as much during the night. I would also recommend pilates -it's amazingly good and I love it and wish there was more than 1 class a week in my town, but 1 is better than none.

    Like all of you fibromites out there I have 'good' days and 'bad' days. For the past 2 weeks I have been going to hospital for CBT (cognitive behavioural therapy). I have found this to be very beneficial, especially with the way they teach you how to stop your negative thoughts, which seem to be habitual. If any of you can get this treatment through the NHS, I would thoroughly recommend it. Osteopathy helped me greatly before and after diagnosis. I have to pay for this but now I only have to go every 4-6 months, if that.

    To top it all I have just had a foot operation for morton's neuroma (pinched nerve endings in the metatarsals. I have it in both feet, so when one foot is better then I have to have the other done! Suffering from this is immensely painful in it's own right and I have had it for 5 years in my r. foot and 3 in my l. foot. Cortisone injections have been keeping it at bay, but in the end I realised surgery is the only course of action.

    I hope that some of you will find this helpful and would love to hear from you.

    So I'll cheerio for now and wish you all less pain, good sleep and happy, positive thoughts and dreams.

    Kimbell

  • everyone has said wot i was gonna say....so the bottom line is......u r not alone hun...........take care and hope u feel better soon xxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Watch out for the Anti-depressants, I put on 4st on Fluoxetine. Make sure you have either Duloxetine or Venaflaxine as these are both weight neutral. I am now on the former and haven't put any weight on since xx

  • Omg, I understand u completely ! I was diagnosed 3 yrs ago, weigh 4 stone heavier, am in constant pain everyday, despite meds, got grandchildren I can't play with, lost my job, my home, my husband has give up work to be my full time carer, and much, much, more! So, don't think ppl don't understand, cos as thousands will tell u, we do! Just try and try to stay strong, ur not on ur own, this is such a terrible illness , so we all have to try and do our best to chat and get through the worse days xxx

  • bless u honey , am very greatful for ur message , ur husband must be an angel honey to give his job up and take care of u he is , my heart goes out to u and ur family , am not so lucky to have that support as my kids get fed up of me saying am in pain , the love me i know but there over it so i just come on here and chat to anyone , its sad hay but thats life for me , i have one good friend who i see once a wk she is great we have been friends for 30 years , but i dont like to talk about myself to much to her but she is there i know that for me , am lucky i have her :) u take care xx

  • Dulexetine u get no weight gain im up and down all time im ocd so thats my exercise plus stretching I refused lyrica and pregblin becos of weight gain think we all in same boat lol

  • Hi Sorry to hear your story n I know how frustrating it is. Ask to b referred to Pain Clinic. I am due to have an injection in my spine. Don't know if will work but at least I'm being taken seriously. If U click on link for medication U can c what most people r on!!! Good Luck In relation to weight i am starting to lose weight as not able to cook myself anything so losing weight gradually. Obviously it's good to eat so the ADKINS diet definitely works even if u don't follow it rigidly. Couple years back I dropped 4 dress sizes. I've been eating everything unlimited n loads of chocolate n cake n whilst I need to lose weight again I've only gone to size 14/16 rather than 18/20. Anyway good luck for the future!!!

  • thanks for ur reply , i had the injection to the spine to it didnt help me and the docters there wasn't nice he had me crying and my daughter was crying to as when he was putting the neddle's in i felt every one and i was screaming , i told him he was harting me and he said it was the stuff thats in in the injection that made me feel the pian more rubbish i said , my daughter give me a cuddle when i got out , but good luck with ur's :)x

  • I have. Gained weight also , I m sick of the doctors not being able to really

    Give help other than drugs that don't really help! I do understand and if I

    Could get to a point where I could excersize without setting of a so called

    Flare it would really help. Hang in there you are not alone.

  • Hiya ellenmarie you look a stunning looking lady to me love. I myself are going through the same as yourself and all the others that have spoken to you. I congratulate you and everyone on this site be proud of your selfs ,god bless Billie x

  • hi billie thanks for ur love message that is sweet and lovely message , i love ur pic of the dog so funny with the glasses :)

  • I was a size 8 when first diagnosed now I'm a 12/14 it really sucks! What

    Really sucks is when people tell you to get more excersize. Really if I could

    Get past the pain I would!

  • bless you honey , i know how you feel as i have my kids tell me all the time so join the club honey lol... just let it jump over ur head i do know , yes its hard to get back into excersize again as like ur self the pain its a killer , try swimming honey but take it slow thats what i have took up , it does help a little , wish u all the best ellen x :)

  • Thank you. I am more than happy to chat with

    You anytime you need a

    Support or anyone to talk

    to. xxxox

  • I hear ya went from a size 8 to 12/14, Being in pain makes it really hard to

    Excersize. Your not alone.

  • Hello Ellenmarie'

    I'm so sorry that your having such a bad time, please try and be kind to yourself.

    I think we've all been down the road of thinking life is'nt worth living, no one understands fibro and the pain it causes and the mental health side that you feel like your going mad..

    I've also have put on weight and i hate it i feel fat and ugly and don't want to be seen at the moment, but i've decided to go out with my son when he takes the dog for a walk, the other good thing i've done is feel my garden with flowers and when the sun is out i love sitting outside with a cup of tea, it really cheers me up.

    Everyone here will always offer advise so your not alone, we have the wonderful foggy with his brilliant pic of the day that always make me giggle.

    Life maybe hard so enjoy the good days because they do come along lol every now and then..

    Love and a great big hug to you

    Viv xxx

  • Ellenmarie i was diagnosed 11

    yrs ago. This year I've had to

    take alive of absence. I also have

    myofacia syndrome and osteo A/R. Hang in there your not alone

    .we are always here xxxoox

  • I've gone from 8 stone to 10 stone. It upsets me. I've only known since Tuesday that I have fibromyalgia but to be honest I feel happier knowing cos the passed 4 years have been so hard. I'm gonna start eating more healthy cos when I'm in pain I turn to chocolate. I'm also starting to swim twice a week. I have a great family so I'm hoping I can manage the pain more now I know what it is. How r u coping now

  • I've gone from 8 stone to 10 stone. It upsets me. I've only known since Tuesday that I have fibromyalgia but to be honest I feel happier knowing cos the passed 4 years have been so hard. I'm gonna start eating more healthy cos when I'm in pain I turn to chocolate. I'm also starting to swim twice a week. I have a great family so I'm hoping I can manage the pain more now I know what it is. How r u coping now

  • My hairdresser's Mum has Fibromyalgia much more immobilised than I currently am and on Steroids. So encouraged by her weight loss, despite that and other medications.... I joined Slimming World 8 days ago. I lost 4lbs at weigh in last night. It's great, I'm definitely less bloated too...people have noticed.

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