How to come to terms with having Fibromyalgia????

Hi all

Well where to start..........

I am SOOOOOOO confused!!!

Two days ago I got told I have Fibro, and in a state of shock!!!

During NYE I went on a short holiday, and well it turnt out to be the holiday from HELL.

Got mugged, Someone tried to break into my hotel room at 3am whilst alone, and got attacked with lit fireworks!!.

When I got back home I kissed the ground (Not a lie!!!)

Well I thought that was the end of it. Turns out it was the holiday that just keeps giving.

Anyway came back and over the last five months fibro has decided it wishes to enter my life.

Doctors think that the shock of my holiday has set off Fibromyalgia and now I have something to always remember the holiday by.

Well at the moment I am in shock!!

I am a special needs secondary school teacher, and teach Design Technology.

Not only is working with special needs children (BESD, ADHD, ASD) very demanding, but so is my subject (Woodwork, textiles, food and electronics) and I am the only DT teacher. On top of this I also teach after school wood work and Food clubs.

I love my job, the kids and the people I work with, but my body doesn't.

I have spend the last year and a half building up the department, which i call "my baby". I'm and excellent teacher, well that was up until jan 2012.

At the moment all I can see is everything I have worked so hard to achieve slowly falling to bits, because I physically can not cope.

I have just started meds and on top I have high blood pressure. The doctors think I have this as my body is under stress from the uncontrolled fibro.

My social life, well " Goodbye partying" "Hello bed".

Family so upset, to see me crumbled so quickly.

The kids at school can not understand what is wrong with me. Although they ask questions as to what is wrong with me, I don't answer as they have enough to worry about, long a let worrying about me.

This to just upsets me more.

one even commented that they " want the old fun miss back!!!", thing is, so do I.

I can't play with my nephew or niece like I use to, which upsets me soooooo much I can't even put into words.

Seeing my father crying as I have "the fog" and can not get out of bed, really hurt.

How can I help my family and friends when I can't even get my own head round it.

Well, now I have totally exposed they way I am feeling and how messed up my head is at the mo, what I came on here for is to ask.........

How do other cope and how have other come to terms with fibro?

Do you still work?

I have only beed in teaching for four years, and really do not want to give up!!

I'm only 27!!!!

Thanks for your time!!!

Gem

11 Replies

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  • bless you and you are still you and you are still a good teacher in your head you are you it is just your body wont let you be and do what you want so try not to get too down you have got to learn to rule fibromyalgia not let it rule you

    it is hard to do we all struggle with it but all you can really do is pace yourself and do what you can when you can

    i agree how can family/friends undrestand when you dont at easter i was with my whole family and we were all talking and my dad bless said yeah but it can get better but it was wishful thinking he doesnt want to see mre like this and worse i have got worse since diagnosis in july 2011 but hopefully i will stay as i am now but you jus never know

    i think you should get somes tuffprinted out and especially for all your lovely kids i would do like a story board and make characters up on fibro and just let them know you are still you but you have this illness in your body that stops you doing things sometimes and make little characters up for each sympton you have that way they will get it

    you could also shoew your family/friends work collegues this website andd give them some literature too in the staff room etc so they get to understand you and that way they can all support you and understand you better

    it is hard to come to terms with how one day you want to paint your lounge and the next day you cant paint your finger nails

    you must also get all your medication soeted and see what helps for you i am on lots of tablets and pain patches we are all different so make appointment with your GP and get all that under control and then it is just what ever eases the pain for you i have a massage/heat pad which is great i have lots of squashy pillow type things in my bed i have deep haeat tiger balm i wear wrist supports (i have carpal tunnel too) so just try to get the help you need

    but dont ever forget you are still YOU so dont lose that or lose who you are and like i said just tell the kids in plain simple ABC you may be surprised

    i have 2 neices who are 13 and 11 and they have been fantastic with me and to me and they have been on theinternet exploring all about fibro at their young age

    your not alone ever

    love to you Diddle x

  • Hi and welcome

    Its still early days and what happened to you on your holiday. Have you sort some form of counselling about what happened to you. Please ask your GP to refer you and also please please get them to refer to a specialist unit so that they can teach you HOW to control the pain of the fibro. A Pain Management Programmes are brilliant if you are ready for them as they help you with knowing how to use skills to cope, some use some form of Cognative Behavoural Therapy, relaxation skills, pacing, goal setting and a few other things. Each unit do it slightly different.

    I have done PMP 9 years ago and it helped a lot. I am very luckily as I have one of the best pain management units in the country and europe.

    One of the things I normally tell people that ring the helpline is that you NEED to go through the grief process as your life wont be the same but you can still learn to live with it. There are 7 stages of the process you might cycle through some of the stages before come to terms the trauma and the way your life is differnet. Currently I am not doing the helpline as I have had a few problems with my depression.

    if you are having problems with depression please see your GP about some help it might mean that you have to take anti-depressants for a while. I have just gone back on them and it could be on them for 2 years which isnt a long time.

    Once you have been through the process you will be able to accept that your new life. It came take a long time but please dont allow it to take years as you will lose a lot of your life.

    Have you spoken to your school and explain that you have this condition and they might be able to offer you some support. They could get an OT in to assess what you need so that carry on with your job you clearly love and the children love you.

    It will get better soon once they have sorted out what medications can help with the pain and other problems, It can take a while for them to find the right conbination which suits you as you are you and someone that has the same condition their combination of medications wont suit you. Everyone is different so medication works in different ways and might not suit.

    Dee

  • Oh Gemma, I can relate to you completely.

    I've had FM for 15 yrs but it's only since my last flare (which was 2 yrs ago) when drs started listening and diagnosed me.

    I was doing a few part time jobs in the local primary school as well as a self employed knitwear designer and have 4 children. I had to choose one job that I could stick with. It was heartbreaking having to give up the Autistic Centre and my knitting (as that's what i trained in) but they were both contributors to the pain I was dealing with.

    I'm now working 4 days a week organising Adult Ed, and Family Learning, within the school, which I love. My boss is great and completely understands as she has a friend with ME.

    Thankfully my family understand too, my mother has FM (even though she is not my real mother) so that helps too.

    And I've found a GP who is not so much understanding...but interested and a big help.

    I also stay open with my kids, I let them know when things are bad and I need their help...if I'm ok they get to make as much noise as they like!

    I have learned to ask for help from friends, if I need a lift, shopping or a shoulder to cry on...

    Also, understanding the pain has helped...though it hurts to do anything I'm not going to make it any worse by doing things...I'm going to be in pain anyway. Just take it easy.

    With all this support I have been able to stay in work, and been able to cope with home life.

    Be open with everyone, let them know how you feel and try not to just smile and say you're fine if you're not.

    Ask for help.

    As Diddle says, you are not alone.

    Take it easy x

    Anjie

  • Hi gemma,

    I am sorry you have been diagnosed with this horrible fibro.

    It will be a shock. I dont work now but i have my own children and its so hard to think of the person i used to be.

    Is your gp anygood?

    Maybe with the right medication and pacing and going to bed early so you get plenty of rest, you maybe will be able to cope.

    Sorry i have not been much help hun, just wanted to welcome you, you certaintly have came to the right place for advice and support.

    hugs, kel xxx

  • i agree with kel ,just want to welcome you ,and its not all doom and gloom

    it takes some time but once you have got your meds right ,and work out what you can do and what sets your flare off ,life isnt so bad ,i know its a shock ,but dont dwell on it hun ,like someone said have some counciling to deal with what happend to you on holiday ,

    its now a turning point in your life ,you may have a different body ,but dont lose site of YOU ,dont let fibro take you away ,

    what ive learnd is you have to fight it all the way hugs to you xxxxxx

  • welcome Gemma, to be honest I dont know how to suggest a way of coping with fibro, we all approach coping in different ways, firstly its good youve got a diagnoses, now you know what your battling against, try and get the right meds to suit you, try to take things easy ,if your body reacts to something, stop, listen to your body, I was told ive probably had fibro for 30yrs when I finally got my diagnoses the other week, Ive suffered 3 yrs of hell, been shunted from one specialist to another, now Im finally diagnosed I can live my life the best I can, albeit not the same as before

  • hi Gemma

    i can sympathise as i too work with special needs children doing respite and care work. i got diagnosed with this at christmas although i ahve had it for 10 years. so i have avoided the meds route as i think i learnt to live with it years ago when i was being told there was nothing wrong with me.

    i still struggle to pace myself and not do too much but i you have to set yourself limits, so make a deal with yourself, give up the evening teaching thing and allow your evenings for restful things and you should settle in to a pattern where you can still work. i found that yoga is really helpful but again only start that when you can handle slightly more. i also see a sports therapist once a week for deep tissue work as i struggle with tension in my muscles which cause my pain and i really find that works. i have avoided the doctors and the meds as i think they take away my ability to function on my own, i think its better to have worse days so i learn my limits, but like i say ive had it undiagnosed for years so i guess that makes a difference. it is so different for everyone and it really is about finding your own rhythms. sleep is a hard one and i think sleeping tablets work.

    this is totally no the end of your life!! give your self a few months to come to terms with it, slow down and find your own pace. i cant not work and so i do all i can to minimise flare ups, something that helps me is less early mornings and a wheat bag constantly on me somewhere.

    personally as i struggled for so many years the diagnosis was a relief as i knew then that i was not making it up and there really was something wrong and i has made me more determined that i shall concur it and be positive and that helps, the depression i had years ago really makes you feel worse physically. so staying positive is a real help. depending on what meds your on i would look in to alternative therapies because the chances are you will have this for the long term future and i think being able to cope with it off meds is definitely a bonus! makes you feel more in control of your life and your body. good luck and remember this is not the end and this will make you a stronger person. you can deal with this and you will be able to achieve everything you want just pace yourself and stay positive (where you can) x

  • Hi Gemma

    Its a balancing act. You need to find what meds/treatments work for you. Can you get help at home? Are there other teachers there that can help with the after school clubs.

    Telling people does help those that love you will understand and not let it get in the way. Others as many of us have found out will not get their head round it. You will find that the kids are more understanding than older people. My son doesnt totally understand (hes 9) but he understands I get sore and cant do things. The in laws Ive explained to on, the other changed the subject and they dont understand/realise. They just see that Ive not popped up to see them during the week - which makes me the anti social one.

    As Ive said its a balancing act. There will be plenty of ideas on here. Lets hope you can find your balance soon

    Lx

  • Hi Gemma,

    welcome to your extended brother & sister fibromites, understanding it is a difficult one to get your head around and sorry to read that your holiday started it off. As it has been said before you are the same person and it is best to take each day as it comes. This fibro site is brilliant as we all help each other and can say how feel you will always have support on here.

    I hope you have an understanding dr that knows about fibro, it is a bit of try & see how you feel with the diffrent meds etc.Be honest about how you feel to family & freinds, take care ,pace yourself it takes time to adjust luv Mary x.

  • You will always be a teacher and you will always be a good teacher.

    I understand more than you will know.

    I have so much empathy for you. I too am a lecturer at an FE college, working with many young males who have, add, adhd, dyslexia,seperation disorder the list is endless.

    Standing up in class, is a must for good teachers, you need to be able to move around to ensure ever learner is getting some of your time, that differentaition is taking place.

    DON'T GIVE UP!!!!!

    You teach your learners' strategies to learn to read and write, you must take what you learn and use it on yourself. Use all the medication that your Dr prescribes and use to your own means. I have everything under the sun. However I take the strongest of them as soon as I get home or at the weekend on good weeks. I use a cain, crutches.

    My college HR have been very good, they understand what I have, they have ensured I do not have to move around the campus to teach, all students come to me now. I have designated members of staff to help me if we need to evacuate.

    I have been suffering from this nightmare for the last 11-12 yrs. I have used up all my strength and willpower over the years. I have this year alone been off sick for over 3months on and off. I try so hard to go to work. I am a teacher, and I will aways be a teacher. It breaks my heart when I hurt so much and get told to give it up.

    What would I do?

    Sometimes it's just pure exhaustion.....blurry eyes....... forgetfulness... ( forgetting what you are writing on the smartboard, is the most embarassing thing) and then comes not being able to move you body. Trying to use the crutches hurts your shoulders, hands, elbows. Your feet are screaming at you to take away the pain.

    I cannot pick up my wonderful grandchildren, they are 2 and 4....They bring me my sticks when they want me to go somewhere with them. They love me unconditionally, as does your nephew.

    Fybro is such a difficult disease to explain to people who do not have it. Sometimes I wish my arms and legs were in plaster, then they may understand. I have been to the edge and back. The wheelchair when I could not walk at all, people having to bathe me.. you have good and bad times with this.

    Just remember...you are not alone with this. We are all here for each other.

    Gentle hugs and love to youXXXX

  • Listen to everyone there... the lady I met yesterday; Pam Wright, was an SEN teacher, she has fibro, I had a similar job til recently. She said "You already have the observational skills to see whats happening with you, make you your own project"

    I've started her coaching today, I try to/will remain positive... over doing yesterday has made me so much worse today.

    Don't give up, adapt thing's, learn new ways, slow down & pace yourself.. ( I need to learn this still...lol)

    xx

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