Do you have the same.

Posted , 9 users are following.

i have had fibromyalgia since 2000 but only really been diagnosed since 2014. I stopped taking all the diffrent medications they given me because they don't work. I find winter worse it's like my body turns to stone. The pain in creases. This summer I had a mini flare and could not walk while we where on holiday.my husband ended up buying me a walking stick which helped. I work and don't want to give up.I have mostly good days as in function able even though pain is there. On my bad days I feel awful not just pain but almost like depression but I know it's not. My question is how do you cope and what do you do to help your selfs? 

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  • Posted

    I have a very similar situation to you. I work 40 hours a week as a preschool room supervisor and love it. I to don't want to give up my job but I'm able to cope by having a wonderful husband and children who take over the household chores etc to allow me to indulge myself in my hobby of book folding. I also find it helps have lots of positive people around, like those iive found on this forum but most of all I've learnt to listen to my body and love who I am not who I used to be. Gentle hugs xxx
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  • Posted

    Hi Florida2012

    I too work in an office 30hrs a week.  I have a family and household chores to carry out and it has been a challenge.  I have been suffering for over 20yrs and only diagnosed August 2014.

    In the last 12 months......I have seen a great improvement on my day to day activities.  With the help of my CBT (Cognitive Behaviour Therapy) and herbal remedies.  Staying calm and positive and steering clear of negativity is the way forward.  Also pacing your day to day activites.  Need to deal with a day at a time and not to over do it.  Once you can master pacing your day to day activites it does become easier.  After all we are all humans and not robots.  Listen to your body and be in control of your fibro and NOT let fibro control you.

    Sending you gentle hugs and postive energy from ME to YOU !!  wink xx

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  • Posted

    Hi there,

    I was daignosed with fibro 14 months ago after I had a fall and crushed my head against my shoulder prolapsing three discs in my neck. I have been in severe pain most days since the fall. I get to a point where I feel sick with the pain which is often like cramp in my Head, neck, shoulders, back, arms hands and feet. because of the wide spread pain they have discounted any intervention with my neck and prefer to leave me on medication which does reduce the pain slightly and I have facet joint injections in my neck which give increased relief for around 8 weeks.

    I couldn't continue throughout the day without any medication at all so I am asking questions as to the amount of pain that is caused by fibro and how much from the Neck injury. The only problem is the Dr's don't like to be questioned.

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  • Posted

    Welcome to the club nobody wants to be in.  Fibro is different for all of us but like you I do not take conventional medication. I rely on supplements, hypnotherapy, cbt, epsom salt baths and gentle exercise and when I can afford it a good massage. Positive mental attitude helps, it sometimes is very elusive but search deep and you can find it.   I also do not eat refined sugars or gluten, cutting these out has helped enormously.  It is a case of trial and error to find what makes life more comfortable for you.  I won't say I am fine every day because it wouldn't be true but I do hold down a job, haven't had a day off ill in over a year. I have had fibro since 1987 although was only given the label a year ago.  If a walking stick helps use it,  I do and have on occasions resorted to crutches.  Vain as I am I have invested in pretty floral ones!    Learning to pace myself and say "no" when asked out by colleagues was a steep learning curve but they understand if they want me into work the next day I won't be joining them on evenings out. I am lucky I am old enough to have done the nights out stuff.  My colleagues are great because although the answer will be "no" they still ask and involve me in conversations planning their latest adventures and fill me in when they have been out so I don't actually miss much. Fibro isn't easy and none of us would choose to have it but we can still lead fulfilling lives just a little bit differently. People who know me understand that I can't sit down for long otherwise I seize up completely but it has never been an issue and they get used to me wandering around during meetings/training etc - surprises the trainers/lecturers though!
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    • Posted

      Well said Maggers. Totally agree with your attitude and moving on with a positive attitude.

      Great people on this forum for support.  Just like you.

      Gentle hugs and take care.  Can't beleive we are already in November!!!  wink  xx 

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    • Posted

      Thank you Bee - my mantra has always been

      I have seen better days

      I have seen worse days

      I do not have everything I want

      but I have everything I need

      I woke up with aches and pains

      but I woke up

      Life may not be perfect

      but I am blessed.

      I keep reminding myself every day that I can always find, without much effort, someone worse off than me. We are only human and there will be days when we feel sorry for ourselves but mainly the more positive we feel the better the outcome.

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  • Posted

    Hi Florida.  So sorry to hear you had issues whilst you were on holiday.  It happened to me during my summer vacation too.  I had thought that being away in the sun and relaxing with no work etc., would help but I too had a flare up.  It seems that with fibro, unlike arthritis etc., warm weather and relaxation just arent a 'cure'.  I so understand when you say that on bad days its not just the pain, its the feeling of being totally unwell and feeling awful in every respect.  I try to explain it to my doctor and she starts muttering about citalopram or anti depressants but I KNOW I'm not depressed, I'm unwell due to whatever is causing this.  It's impossible to be upbeat and cheerful when every fibre of your body hurts in some way and the fatigue hits like a sledgehammer.  I've never been like this.  I've always been a coper and just got over things, even worked through illnesses in the past like proper influenza (Hong Kong 'flu in the 1970s), Bells Palsy and a major accident in 2008 - I just got on with it.  This is different, this is like a wipe out.  I so comprehend your comment about your body turning to stone - every morning I have lead in my arms instead of blood - how frustrating that is.  The meds that are commonly prescribed dont work for me either.  The opiates make me sick and the remainder just do not work, end of.  I am finding it hard to comprehend that in an era where medical science can replace almost everything in the body successfully, nothing can be done to find a cause and a cure for this.  

    The only bit of advice that I've found really helpful is to be true to myself - ie if I'm hurting admit it, if I'm tired - rest up, and above all NEVER feel guilty about not being able to do something if it's beyond my abilities because of this.  I keep searching and keep asking and I hope one day a doctor will actually listen and answer the question instead of their eyes glazing over, their pen edging towards yet another useless prescription and being shuffled out of the door with a sigh of relief!

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  • Posted

    these meal replacement shakes i sell they have 25 different vitamins and tons of energy
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    • Posted

      so laughing at 'space man style' meals smile

      Glad to hear you stick to normal food florida - if we eat an unprocessed balanced diet, we get all the nutrition we need from REAL food.  If blood tests show we are deficient in any particular vitamin level, then the doctor will advise on what can be taken to supplement it.  Meal replacements - eg shakes, packets, powders, etc., are just marketing hype and money making schemes in my view.  It's also a very lazy way of thinking it's a quick fix - nothing beats a healthy and well balanced real food diet.

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  • Posted

    just sayung they are great for fybramyalgia
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