new to this condition and the site

hi as i indicated I am new to the site and although I have had Fm for 20 years i was treatedlike a mental patientand attention seeker. ithas decimatedmy family relationships. i am from Zimabwe but a uk cit. and only when i arrived here three years ago did they realise I had fm. up until last week I would not believe therewas anything really wrong with me and still believed everyone when they said it was all in my mind . that has left me with a srious problem when it comes to needinghelp and i have to use a wheel chair if walking more than twenty feet.

i feel so silly and useless and a real problem to everyone. and the pain srivesme crazyand I know i am lazy when i can find the energy to get up out of bed. does anyone on here feel the same and how do you cope. faded

21 Replies

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  • Hello

    Its not in your mind, and your not an attention seeker, its just so

    horrid, no one to talk to and people dont understand fibro we all

    have that problem with some people and they are not worth telling

    to that you have fibro.as they just dont understand

    I dont have it as bad as you do I dont nead a wheel chair that must be the

    pits, the lack of energy is bad you dont have the energy to to anything, and

    yes the pain is bad at times but the medication does help a bit I think to

    an extent you get used to the pain and you are able to cope with it but the

    exustion is some thing else .

    I cant tell you how to cope, as I dont realy know how I do I go to work only

    3 days a week and I am so tired after that I dont do anything after, but some

    times going to work helps me work through the pain

    People in hear help me as they understand more than anyone else so I

    read the problems that people have and that is a great comfort to me.

    Dont waste your life your not lazy silly or usless and its not caused my

    a mental illness, there is a lot of information on here just look at the tags

    at the top of the page. try and get out of bed if you can as staying there

    all the time is not good and you need to try and excercise a little every

    day, dont give into it, and when you feel low come in here and have a

    moan. as people understand and we can all help each other

    Viv

  • hi there glad you found the site ,im sure you will enjoy it ,and learn so much like i have gentle hugs xxxx

  • Thanks for the loving answer it made cry ...... but even after a few hours on the site I am being more relaxing about this thank you petal it is my real name not a nickname ..

  • welcome to this wonderful sight it is amazing how common your story is and how sad .. this sight is growing very quickly and you will find lots of warmth and support

    I know it sounds easy to say do not feel " so silly and useless and a real problem to everyone " you are amazing and individual the same way as everyone on this support group you cope the best way you can please be kind to your self xx

    gentle dyslexic hugs

  • Hi fadedblossom, the most difficult thing I find is to pace myself. Because if I think about it, it means I am accepting fibro, and I don't want to, ...stamping my feet in a tantrum here! What I find useful is not telling myself off if things are difficult and while I agree it is good to get up every day etc. If I get up and find I really need more rest, then I apply discipline to this too and go back to bed. I have tried pushing myself 'through the pain', but it simply does not work with fibro. So I have accepted that I simply need to look after myself. I give you permission to do the same !!

    luv and hugs

  • thanks for the blog and i am trying hard to stoppushingmyself was given two cats on doctors advice soi have no choice but to groom them and exercise my hands andto get up at least to fed them. was avery good therapy for me.

    loviesfrom me too

  • Hi there, welcome from me too. :)

    Everybody on this site totally understands and it is so good to get things off your chest. I still learn new things about these illnesses, and i always get support when i need it from all these lovely people.

    I am not very good at asking for help or even taking it when it is offered, but i am learning that pacing is the key and it isnt the end of the world when it isnt done.

    I hope you find this site as good as i think it is.

    hugs, kel xxxxx

  • I am already finding the site wonderful after justone read thru hope you have a pain freeday ..hugs just baby ones tho

  • Hi

    I, like you are new to the site, and it is a God send...I have been diagnosed with fibro for only 2 years. Its a constant uphill struggle from morning to night for me and I feel sleep is more damning than the pain sometimes! I find this sight a great help, solely in the fact that I am not alone and reading other 'friends' with fb, gives me that comfort that I am not the only sufferer and I can share my feelings without being judged! I hope that you get this comfort as well! Your new friend, freya xxx

  • hi there freya thanks for the comment today i feel tons lighter having realised that I am actually ill this is real strange to think i have become grateful to find out i am really ill but I thought i was headed for looney bin before. now i can plan a life within the boundries - note i did not say confines of fm. hugz and butterly loves petal. (my real name but i cannot use it one here cos most folks in uk use it as a sign on for some reason that i will never understand cos i have hated my name all my life lol.) Iam from africa and am a white Zimbabwean of uk descent.

  • I am glad that you are thinking of boundaries that are within your acceptance of pain, and you do not think you are going nuts!! I am only now thinking of this, as I felt that I could beat the pain..ha! I now accept what I have and live my life within my boundaries...e.g. I did 1 hours worth of ironing and paid the price. Next time, I will only do half an hour!! Also the fibro fog makes me laugh now instead of frustrating me. I lived in South Africa (way back in the 80's) and had a few Zimbabwean friends!

  • would love to hae u on private emailwhen u feel safe. wouldbe lovely and uplifing to writeabout the land i love dearly and can never retrnto. this site is kept for fm chats only i think........ am ion my bed now did washing cant iron at allasi have permpain inarms so i livea crumpled life lol petal

  • *site - oops fibro fog kicking in!!! freya

  • Hi,I am new to this site and I struggle to understand it a little bit!so I don't never really write much!!! I find it very hard wiv who u can trust wiv this I have lost friends my in-laws don't believe me cos my sister in law has fm but she works and goes out drinking every weekend and really enjoys life to the full!!! Where as my life has changed dramatically and for my kids and husband too!!!!I wouldn't say I'm bed bound but I would say I'm housebound I don't really go out unless I have to go to the doctors or appointments!!!my family don't really ask me much!!! My husband was wonderful in the begining he sold he's window cleaning buisness to become my full time carer BUT the last few weeks he's changed so much its like he doesn't believe me no more I think it could be down to he's mother!!!! I don't understand do they think the doctor told me to give up working and give me so much medication including morphine for the fun of it!!!!! Sorry going on about myself but my point actually was that I feel so alone and I feel like I'm losing my mind so I no how u feel!!!! I mean i think to myself this will not beat me but its gettin a harder and harder battle!!!! I hope u find things get easier for u and if u ever want to talk I'm only a msg away lots of love xxxxxxxxxxxx

  • Hey Loullabelle

    I know exactly how you feel. I can only speak for myself, but in the short time that I have had this fm, I like you are on drugs, it stops you from driving, I have lost my job (teacher) and the people who you thought were your friends don't understand. My husband has been wonderful throughout this, and I cannot thank him enough. I just wish fibromyalgia came with a rash or something that people could see!! All I can say is, be strong and know that you are not alone in this..Thinking of you. xxx

  • i left my husbandof 44 years because he thought i wasan idle woman and i was intoo much to take the emtional abuse.. so here i am down but never out stay rested petal

  • Hi I am like you new to the site that is,but i have found that there are so many people like me and you on here. Hope you find us all helpful,welcome on board. xx

  • Hey blossom

    I hope that you are having a 'better' day, today! If you need to vent, shout and scream - I will listen, because I know how you are feeling. Freya x

  • Hiya everyone, new to this site too and wot a great site from wot ive read. I like the rest of you ave Fibro along with a few other medical issues.....PTSD, Endometriosis, TMJ, Tinnitus & wear a hearing aid, Caartlidge damage to my right knee, varies surgeries for this, OA grade 5 in right knee, JHM in both knees, elbows and carpal tunnel in left arm, ulnar nerve damage in left elbow. I was a passenger in a RTA nearly 4yrs ago now, all the above damage was due to this and it was a very traumatic accident to which I lost a friend. My Fibro has been set off by the trauma and I feel everyones pain, and how they try and deal with it on a daily basis. i personally am finding everything too much to deal with and been having really bad thoughts just recently. I have virtually no mobility as i need a right knee replacement but being on 37 ive been fighting for 4 yrs and look like waiting till im 50 lol. Wot good is that to me???? Really if i walk into an atos medical with a needle in one arm and a black can in the other, im depressed, but if i struggle daily with the conditons ive got i can work!!! When is this bloody system gona wake up n smell the coffee.......seriously where do you go nowadays to get the help you need???? Can anyone tell me and where the miracle cure is cause like all of you we want some plz.

    Ok lol rant over, hope your all as well as you can be. xx

  • I think with fm and being diagnosed with any long term condition is like grieving for the life we used to have and the person we used to be,so we now have to learn to live all over again with all our pain and limitations with little or sometimes no support, very sad but we have each other to talk to and that is a life saver. group hugs. xx

  • I have been on here just a few days and already i feel at peace with so many issues i had thank you all it wonderful to talk to folks who understand. I had a really bad day today dragged myself to heart spec. appt and to my surprise he said you look like you are having a fm flare up. you could have knocked me down with a feather. my own rheum spec wasso lousy and here was a cardiac man who fully understood. it was uplifting if you can understand here i am am coming from am washed out now and back in bed...... butterfly hugz petal

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