Discussion in 'Fibromyalgia Main Forum' started by Louise1988, Aug 8, 2005.

  1. Louise1988

    Louise1988 New Member

    Hi I am Louise, 17 years old in the UK and been in pain for about 6 years now, tried many medications and none have worked. In the last month I have been diagnosed for FMS. I have been signed off work and am currently receiving income support. My doctor always seems to be on holiday so many of my questions are not being answered. If anyone can answer the following please do.

    1. Is FMS a disability?

    2. Am I going to get better?

    3. Will ANY medication work for me (I have tried many already and none have so far!)

    4. Will I ever be able to go back to work?

    5. What job is suited for someone with FMS? As I am aware I cannot work with children as I intended
  2. lvjesus

    lvjesus Member

    I don't have any definite answers for you but I wanted to say that this is a good place for you to be. You will find many answers here as well as support.

    I work full time in accounting, but I consider my FM as mild. I do have pain somewhere all the time, but it is bearable most of the time.

    I would say that yes, FM is a disability, or can be, depending on the severity.

    Many people do get better with the right combination of suppliments, meds, exercise, etc. Each person has to find what works best for them. My approach is to go after whatever symptom is the worst. That might not be the best approach, but for me I try to keep on going and that means knocking down whatever is holding me up in the short term.

    I would recommend trying to find a doctor who knows about FM and has patients that he or she is treating, if this is possible for you. I am in the US and I do not know the ins and outs of the UK medical system. There are members here from the UK that will help, though.

    You need to be proactive in your treatment and research of treatments and partner with a doc that can help you as well. We will help as much as we can and much of the advice you get here will be available no where else, at least not at the doctors. We just know more about all the fun and frustrating symptoms, 'cause we've got them!!


  3. backporchrags

    backporchrags New Member

    I am sorry for the blow you have taken with a FMS dx. I also have suffered from early childhood.
    Do not let anyone tell you you have limitations!!!! Find out for yourself by trying, never stop trying.
    You can still work with children. Mabey not in the manner you hoped but their are many, many children who would benefit from your caring. You can be a carrer counceler, a therapist, tutor( you can do this from home or on line } many doors are still open for you.
    ( I do charity work at my local hospital. I rock new born babies so the mothers can rest. I do this twice a week and get much enjoyment from it)
    Yes, there may be medications that will help you. I have tried many also, it took 5 years to find a med that works for me. Don't give up hope!
    Getting better with FMS is a tricky question. I have had my symptoms get worse over the years but with exercize and medications I have kept bad flares to a minimum.
    Please do not lose hope at such a young age. There is always hope for a better life with FMS. Read all you can and take an active roll in your care. Don't get overwhelmed with all the info out there, so many of us have different symptoms and severity of pain. There is no FMS "rule" or standard for us.
    keep hope alive dear, continue learning, start studying for your carrer, FMS does not have to ruin your life. Your plans may have to be altered but not all together lost.
    Hope and Hugs!!!
  4. Adl123

    Adl123 New Member

    Dear Louise,
    Welcome. You really have a lot on your plate now, don't you? From what you say, you seem to be on your own. I'm sorry you are going through this. I don't know about the laws in the U.K. but here, in the U.S. you are a minor. Because of that, I don't think I can direct you in medical thngs, but , I can tell you honestly, my experience.

    Fibromyalgia can be considered to cause disability if one cannot work.

    There is always hope of getting better, but I try to live day by day. I do what I can to prepare for the future, without worring about the future (it's hard). When one is young, and has many plans, it is hard to be patient. Learn to be compassionate towards yourself.

    I cannot advise you about medication because I have not taken any. I have had Fibro for over 20 years. I drink Aloe Vera juice. But, then, again I cannot advise you. Check with your health provider before you do anythng anyone says..

    Some people do go back to work, some do not. As for work, do what you love. Why not try out some things that do not cause you too much pain or exhaustion, and see if you can turn one into a career? If you are on assistance now becaue you can't work, give yourself time to get stronger. Worry and stress will not help. You can find your answers in your own time, so be sure to give yourself time, and don"t compare yourself to other people. Do you have a hobby or an interest? Could any of those be expaned to provide some money for yourself?

    Above all, don't give up hope. There is always an answer, you only need to look for it, and then listen and be open to it. Believe in the future.

    You mention that you were going to work with children. You are wise to recognize the commitment necessary to do so. You could, however, maybe, tutor. I had some wonderful years where I tutored three children of a well to do family. I helped them with their homework and taught them some extra things,as well as study skills. Now, 5 years later, I still keep in touch with them, and it is a joy to see them flourish.

    Be creative, loving and patient.

    God bless you, and, remember, you are not alone.
    Big hugs,
    [This Message was Edited on 08/09/2005]
  5. AFair

    AFair New Member

    Mickel Therapy has cured my boy friend if you are interested see my other posts for story so far or alternatively take a look at doctor mickels web page.
  6. AFair

    AFair New Member

    Mickel Therapy has cured my boy friend if you are interested see my other posts for story so far or alternatively take a look at doctor mickels web page.
  7. smiffy79

    smiffy79 New Member

    i am 26 and in the uk and fms has been w/me since i was about 8 yrs old :(
    yes i would say fms and cfs were disabilitys,they infringe on every part of our daily lives and then some more for the sake of it lol i am on dla higher rate mobility and lower rate care as my wrist collapsed under the weight of a pan and burned my arm :(
    according to the national fibromyalgia research association this is life long but according to my dr it will get better in time lol your guess is as good as ours but i like to take life one day at a time
    medication wow thats where we all fall down,i am on morphine right--you would expect morphine to kill the pain or at least i did HA.
    dont get me wrong when i dont have it i know about it,but still i am still in pain and miserable.
    as well as morphine i have amitriptyline at night as it helps with sleep and the pain at night.
    work,next year i am hoping to set up my dog training business and i volunteer w/a dog rescue as a homechecker.

    and your last question.the papworth trust is helping me to set up the business. you will get a disability adviser to help you with whatever you wanted to do,which includes working w/kids if you so i have the number somewhere i will try to dig it out.

    why on earth would you not be able to work w/kids,does that mean we cant be mums? are social services about to take my kids away? i hope not :)

    all the best,smiffy
  8. Louise1988

    Louise1988 New Member

    I am actually in tears right now! lol, it may seem silly but all of your posts really did help. You are all right I should not give up hope (and with a family like mine I won't be able to lol!)

    The reason I have said I will not be able to work with kids is because I struggle to pick up Monica at times (my lovely niece- in my profile is a photo) and I know I will not be able to handle more then about 2 children at a time- I have not been told I cant do this but however I kind of know my limits and was daft for thinking I could in the first place.

    I have tried amatripuline and many other anti-depressants but none of them have worked! I cannot take ibrofin because I am also asthmatic (I have tried it and reacted funny!)

    I do have many things I enjoy doing but it depends how I feel on the day - I love babysitting my niece but sometimes I dread that because I get stressed at her for silly things if I am having a bad day.

    I would love to work from home - but with no money it is hard to start a business of my own,

    One of you said you can do counselling from home (please tell me more as I toke a semi counselling course at school and would love to do that again.

    I am very stubborn and determent not to go back to school or college (I was bullied for the whole of my school life)

    And one of you said that I seem to be having to cope with a lot at a young age and on my own - I have supporting family but I really do not allow them to get close and I cant talk to them. I have had to deal with allot in my life but I THINK I have managed to cope with all of that over the years.

    Any ways thanks again, and if anyone else has anything to say please do so.

  9. NyroFan

    NyroFan New Member

    You have not really mentioned doctors and I believe it is important to have a good one. In my case, a rheumatologist.
    When they understand the disease they can help you immensely.
    We can only take so much care of ourselves, then we have to leave it to the doctors who can monitor what we do and what medications we can take.
    I would do that as a first step: get a really good doctor.
    Good luck,
  10. Louise1988

    Louise1988 New Member

    Yes basically i was under a pedatrition (because i was under 16 at the time) who told me it was all in my head!
    then i went back to the GP (general practition - family doctor) and told him i was not happy with that as i knew something was wrong. Once i turnt 16 i saw the rematoligist and she diagnosed me just last month and told me she did not need to see me anymore and i should just go to my GP and find meds that work.

    About 5 years ago i went to phisotheropy once a week but this did not help either.

    I need to talk to my GP and find a doctor who specialises in FMS or CFS as i do not think other doctors have a clue about it!

  11. Louise1988

    Louise1988 New Member


    I have looked on the website but it is confusing me!

    where do i look on it.

  12. Louise1988

    Louise1988 New Member

    hi, i have phoned papworths trust and as i am only 17 they can not help me.
    Thanks for the suggestion any way.

  13. smiffy79

    smiffy79 New Member

    im so sorry they couldnt help you out,did they not offer anyother advice?

    all the best,smiffy
  14. Louise1988

    Louise1988 New Member

    the did say that connexions may help but i have been to them before, but didnt find them useful - although i shall try them again.

    Thanks anyway
  15. Louise1988

    Louise1988 New Member

    thanks for your reply, I have been to connexions and we have came to the conclusion that i should try a receptionist job - sitting down when i want but moving around to pass things on from time to time - she did say that i should only try part time though.

    I went to the doctors again on friday and he has refered me to a phisio theripst and suggested to the physo acupunture and hydrotherpy.

    I have wrote a letter of complaint to the cheif of my hospital as the specialist wrote back to the doctor (he wrote to her asking for her advice on medication as the ones he knows of havent worked) she replyed and said nothing else we can do she needs to get used to it!!!! not a professional reply i feel.

    I will be recieving incapacity in november as i have not been out of work for 25 weeks and i will be claiming for disability when i get down to get the forms.

    I have done alot of research about fms and i am sticking to the suggestions made but i am starting to feel worse and down as i have no money (income support is hardly worth talking about) and i am fed up of stopping in all the time i want to get back to work asap.


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