Newbie needing support on Fibromalygia

maz2009
maz2009 Member Posts: 4
edited 12. Oct 2009, 13:55 in Living with Arthritis archive
Hi, I have recently been told I have Fibromalygia (not sure if I have spelt this correctly)

I am really suffering and feel like I am moaning all the time to my family when they say "How are you feeling" I now find myself saying "much better having a good day" When really I am suffering as Im sure they think I am exagerating the pain, stiffness and frustration I am constantly feeling with this.

I am very tearful alot of the time and unsure why as I know there are alot of people out there worse off than me! Its even more frustrating when I have young children and a career that has meant the past 9weeks I have been on sick leave due to my inability to drive, walk, sit or even concentrate properly as I'm sooo tired all of the time.

I am still pending an MRI and physio along with correct medication as my rheumatologist also suspects RA aswell! I am currently taking Gabapentin (again hope I have spelt this correctly) which really knocks me about in the day, so have stopped taking in day and only take on night, as I have children and need to be normal for them in day. They do make me sleep though which is great as I have suffered with sleepness nights now for weeks/months!

Any advice on how to manage/live with Fibromalygia would be appreciated, as the leaflets that have been given to me from specialist are not very informative.

Also don't know how to explain what I have to work or how they can support me going forward. Will I have this the rest of my life? Will I suffer in pain like this all of the time? Can I go back to having a normal life?

Many Thanks in anticipation of your replies

Marie xx :P

Comments

  • page35
    page35 Member Posts: 1,081
    edited 30. Nov -1, 00:00
    Hello Marie
    Welcome to the forum :D
    i dont know much about fibro sorry, i have RA so can sympathas with you on the pain and feeling tired and just awful really.
    but once you get meds that suit you, you should start to feel better.
    if you phone the helpline (no. at top of page) the will be able to give you advice and send you info, i called them when first diagnosed and they were very nice and helpful :D
    sorry im not much help.
    all the best
    page
  • chinablue
    chinablue Member Posts: 48
    edited 30. Nov -1, 00:00
    hi Marie,
    if you look it up on google you can find out a lot more info just type in fibromyalgia not sure about spelling and lots of helpful and not so helpful things will appear you just have to pick the ones that give you info rather than trying to sell you stuff.
    I have had ra for about 5 years now and have always felt tired and my muscles and joints have acked all the time. After looking it up symptoms i thought it was possible i had it so i went tosee a chrioprator to see if i could get some pain relive after seeing me he said it was not a good idea for him to do any work as it was very possible i had fibro and when he asked me what my meds where he said that is what they treat it with anyway which was methotroxtate so ask your rhemy about that.
    Luckly for me my son is and adult now and helps me a lot and understands the pain i am in so i have'nt got that worry but unfortunatly i was managed out of my job i would say to you just follow the process and see what happens dont offer to resign but let them try and see if they can help you and see what happens you may be lucker than i was. I always explain the exhaustian as you being pluged into the wall and someone suddenly pulling your plug out anyway hope your feeling better soon lots husgs CB :)
  • eastmidlandsman52
    eastmidlandsman52 Member Posts: 27
    edited 30. Nov -1, 00:00
    Hello Marie.

    I have every sympathy for you with this dreadful illness. I long ago gave up trying to hide my fibro and my 'arfur' from friends. If they ask me how I'm feeling I answer according to how my clapped out old body feels! I say it how I feel it now. If I have a crap day then thats the way I tell it. I don't have 'good days' anymore just less 'bad days'!

    The firm you work for is duty-bound to be D.D.A. compliant. This means whenever you go back, your firm has to by law make sufficient reasonable changes to your work area to enable you to carry on with your work. I believe Arthritis Care has a booklet on this which should be well worth a read. Your firm simply cannot ignore your plight and sack you for being ill.

    Arthritis Care also have excellent booklets on 'fibro' and 'r.a' which are written in a way that is easy to understand. You would certainly feel better for reading them! The problem with the internet is that there is so much rubbish written by so many people,that its hard to know what to believe.Without doubt Arthritis Care booklets and helplines are far superior. There is however a fibro association for us suffers which operates within the UK. You might it a worthy read.

    I've had fibro for many years now and like arfur it comes and goes in terms of pain. You are very fortunate to be seen by a rheumy who clearly knows his stuff. This is great news. It can take a while for the pills and potions to settle down. In some cases it could be some change of medication might help if one set of pills doesn't work. Once you do find the right combo of pills,it should help settle both down.

    Sleepless nights are a common side effect of fibro and arfur. I have Amytriptylene for my fibro which I take at night to help me sleep. This little pill was originally used as an anti-depressant but its found itself a new use for us fibro sufferers. I still don't sleep well because the arfur wakes me up umpteen times a night! Oh what a to do!!!!

    I do wish you well and hope that all the various investigations and treatments will eventually settle your possible r.a. down and help with the fibro. Both conditions can be successfully treated but you will have them for life sadly more so the r.a. than the fibro. Just make sure you read the various booklets publised by A.C.

    Don't forget you are not alone with either condition. You have us good people to lean on and A.C. also have a helpline which is truly invaluable to everyone like us who suffers some form of arthritic and related conditions.

    Chin up my good Marie! Fight the good fight etc. You are not alone whilst we're all here to help you!

    All the very best.
    maz2009 wrote:
    Hi, I have recently been told I have Fibromalygia (not sure if I have spelt this correctly)

    I am really suffering and feel like I am moaning all the time to my family when they say "How are you feeling" I now find myself saying "much better having a good day" When really I am suffering as Im sure they think I am exagerating the pain, stiffness and frustration I am constantly feeling with this.

    I am very tearful alot of the time and unsure why as I know there are alot of people out there worse off than me! Its even more frustrating when I have young children and a career that has meant the past 9weeks I have been on sick leave due to my inability to drive, walk, sit or even concentrate properly as I'm sooo tired all of the time.

    I am still pending an MRI and physio along with correct medication as my rheumatologist also suspects RA aswell! I am currently taking Gabapentin (again hope I have spelt this correctly) which really knocks me about in the day, so have stopped taking in day and only take on night, as I have children and need to be normal for them in day. They do make me sleep though which is great as I have suffered with sleepness nights now for weeks/months!

    Any advice on how to manage/live with Fibromalygia would be appreciated, as the leaflets that have been given to me from specialist are not very informative.

    Also don't know how to explain what I have to work or how they can support me going forward. Will I have this the rest of my life? Will I suffer in pain like this all of the time? Can I go back to having a normal life?

    Many Thanks in anticipation of your replies

    Marie xx :P
  • justinbarrow
    justinbarrow Member Posts: 338
    edited 30. Nov -1, 00:00
    Hi Marie, I have been diagnosed with fibro a few months back now and i understand how you must be feeling as i couldnt understand why i was so tired most of the time, the thing is you look normal on the outside but you feel weak and tired.

    At first i thought it was down to my arthritis making me so tired. The sleepless nights are bad for me right now so hope you get into a good rythem as the more sleep you have the better i find to cope but i am lucky to get a good few hours without waking up.

    There unfortunatley is no magic cure but it can get easier and with the help of the right medication to help sleep i hope you feel better.
  • maz2009
    maz2009 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you all for your kind messages. I really appreciate your time and advice.

    I will follow up on your suggestions and hopefully start to feel better on managing this & asking work to support me.

    Once again Thank you xxxx
    :)
  • mike77
    mike77 Member Posts: 879
    edited 30. Nov -1, 00:00
    maz2009 wrote:
    Hi, I have recently been told I have Fibromalygia (not sure if I have spelt this correctly)

    I am really suffering and feel like I am moaning all the time to my family when they say "How are you feeling" I now find myself saying "much better having a good day" When really I am suffering as Im sure they think I am exagerating the pain, stiffness and frustration I am constantly feeling with this.

    I am very tearful alot of the time and unsure why as I know there are alot of people out there worse off than me! Its even more frustrating when I have young children and a career that has meant the past 9weeks I have been on sick leave due to my inability to drive, walk, sit or even concentrate properly as I'm sooo tired all of the time.

    I am still pending an MRI and physio along with correct medication as my rheumatologist also suspects RA aswell! I am currently taking Gabapentin (again hope I have spelt this correctly) which really knocks me about in the day, so have stopped taking in day and only take on night, as I have children and need to be normal for them in day. They do make me sleep though which is great as I have suffered with sleepness nights now for weeks/months!

    Any advice on how to manage/live with Fibromalygia would be appreciated, as the leaflets that have been given to me from specialist are not very informative.

    Also don't know how to explain what I have to work or how they can support me going forward. Will I have this the rest of my life? Will I suffer in pain like this all of the time? Can I go back to having a normal life?

    Many Thanks in anticipation of your replies

    Marie xx :P
    Hi Marie , I have generizilesd osterarthritis , my wife Hazel , has Fibromaglia ( I can never spell that word ) she is very tired all the time , and itchy , her sleep is mucked up bic time at the moment she is on Burtans patches 10mg, which does not help her so she is seeing her gp on MondayMarie there is loads of tretment its just finding the right one for you .

    Best of luck
    Mike R & Hazel & Mike JR
    Mike R & Hazel & MikeJR
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I don't have fibromylgia, but I worked with a girl who did. I think you have to pace yourself and get plenty of rest but, also do some exercise. Their is a site on the web called Fibromyligia association, or something of the sort, if you google it, you should find it. I don't know what its like, but I have seen it and maybe they have some useful information. Its worth a visit anyway. Please don't think I'm trying to get rid of you. It sounds a bit like that when I read it back! You've got to stay with us cos we're THE BEST!!!
    Lots of love Sue
  • springs65
    springs65 Member Posts: 22
    edited 30. Nov -1, 00:00
    This is a good site for lots of info on Fibromyalgia

    http://www.fibromyalgia-associationuk.org/community/
  • butterfly1
    butterfly1 Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi Marie, I was also recently diagnozed with Fibromyalgia. I've been getting lots of support from the FMA Uk forums here : http://www.fibromyalgia-associationuk.org/community/index.php#3
    You'll recognize me as it's a similar user name to here.

    I already had Psoriatic arthritis and I'm finding coming to terms and dealing with the Fibromyalgia much harder than PA. It has such a big impact with pain all over and the fatigue is awful. I started ami a few weeks ago and just upped the dose and feeling spaced out all the time. It hasn't helped the pain at all and the fatigue has got worse again not to mention the floodgates opening at the slightest little thing. I'm not coping very well at all with this.

    Take care and lets hope we can get through this.

    x
  • butterfly1
    butterfly1 Member Posts: 35
    edited 30. Nov -1, 00:00
    Sorry Spring65 I didn't spot you'd alreadyput the link on. Put it down to Fibro-Fog :cry:
  • springs65
    springs65 Member Posts: 22
    edited 30. Nov -1, 00:00
    Thats ok butterfly. I have Fibro and OA and often look in on the site but don't post. Some really good and useful info on there though
  • maz2009
    maz2009 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thankyou all again for your support. I am finding your comments/suggestions really uplifting and supportive. I have been on the sites you have provided which are excellent & very useful.

    I have my Occupational Health meeting tomorrow and am not looking forward to this and subsequently made my Fibro worse with stress!!!! I am really worried regarding work and how Fibro is going to effect my job long term. I don't wont Occ Health to say I am unable to return to work in the role I am in but equally, I know I am not ready to return to work until I have my fatigue, pain & discomfort under control. I am taking Gabapentin but I can't surely take this forever?????

    I have also had my appointments come through today for my physio and MRI for next week, so hopefully when I next see my specialist beg of Nov 09 I can have all my questions/concerns and confirmation of RA all answered.

    Once again Thank you all for your support and time you have taken to respond. I also appreciate your own shared experiences which has helped me to know I am not alone and what I am feeling is shared amoungst us all.

    Take care everyone and will keep you updated on my progress (being positive) :o

    Marie xxxx :)