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Suffering with Fibromyalgia

Posted , 6 users are following.

Bee70
Bee70

Hi All

This is my first visit to a group like this.  So it's all new to me!

I have been suffering for almost 20 years with pains.....

It started with pains in my right hand. The pains got severe as the weeks went by. I went to see my GP and he said it signs of R.S.I. so he put me on anti-inflammatory remedies. Pains were getting worse and so I returned back to my GP and he just changed my medication.  I started to get swelling in my hands and the pains not getting any better.  I soon started to experience shooting pains in my arms. To cut a long story short, I was a back to my GP almost every week. I then seeked private treatments over the years which included visiting a chiropractor, relexologist, accupuncturist, herbalist........you name it I had gone through the mill and back. Up-to-date I now have pains all over the body and it finally got diagonised as Fibromyalgia.  

I feel as the people closest to me don't understand my pains, as they see me doing my day to day duties.  I am a mother of two boys, ages seventeen and ten. I have a husband who does not want to see me in pain but does not know how to comfort me either. I have support with the minor things in life but family don't feel what I feel?  Lately I have been feeling rather lonely as I don't know who to chat to !

So I am counting on my friends out there for support !!

0 likes, 16 replies

16 Replies

  • caroline271
    caroline271 Bee70

    Posted

    Welcome Bee, I do feel for you and understand how lonely it can be especially when family try to support you but don't fully understand how we feel inside as they are unable to experience the strange sensations and pain themselves. I think that they too feel hopeless as they don't know what to do or how to help and support us. We need to be open with eachother and support each other in order to cope with fibromyalgia and the challenges it throws at us on a day to day or hour to hour basis. Do post on this forum as we are here to help each other.

    Caroline

    • Bee70
      Bee70 caroline271

      Posted

      Hi caroline271, I try to tell my husband when I am in a lot of pain, as he doesn't know what to say or do ? I've lived in silence and found it got me no where apart from being lonely. I speak out and family don't understand! I feel pains all day and everyday but still carry on regardless. Stay calm and positive is the only way. At the end of last year I had CBT therapy which I found useful. It helped me to put life into prospective and I've started 2015 in a positive note. I do get days when I feel alone as the pains are over powering. Sleep is non existence  and I get tired very quickly......but my kids get me through too ! I suppose one day at a time.
    • caroline271
      caroline271 Bee70

      Posted

      Lack of sleep can be a huge problem especially when stage 4 deep sleep is required for muscle repair; no wonder our muscles tire and ache so much. I have tried magnesium oil, aromatherapy and kalms night but they gave me a headache. I now use Ashwaghanda, aromatherapy and magnesium. I have had 2 nights when I have slept through until 5 or 6 am along with one totally sleepless night. I find that tramadol and paracetamol helps at night along with diazepam 2 mg when my muscles are overactive and vibrating or twitching. I think it's trial and error with both medication and ways to assist sleep; I may look into CBT since you found it useful.

      Caroline

    • Bee70
      Bee70 caroline271

      Posted

      I recommend CBT to anyone. It makes you focus on oneself and put oneself first. Go for it. It's a one to one session for a period of six weeks.
  • Sorrentogirl
    Sorrentogirl Bee70

    Posted

    I also suffered for years on and off until about 3 years ago the pain and symptoms became permanent.  I unfortunately have a husband who never asks how I feel and is happy for me to work 50 hours a week.  I finally have an appt with a rheumatologist on wed and know there is no cure and I just constantly take co codamol as they.re the only pills that help.  I'm sure my friends got fed up of me being constantly tired so now I just dont say anything..  Of course the problem is generally people can look fine with this condition and others cant understand they condition.  I'm at the end of my tether.

     

    • Bee70
      Bee70 Sorrentogirl

      Posted

      Hi Sorrentogirl, I totally agree when you say on the outside we look as any other person and trying to lead a normal life, but people don't understand the internal pains we are dealing with day in day out.  Unfortunately I feel everything is trial and error with trying to get some form of relief. Support is all I require and definitely don't want sympathy. Take a day at a time.lol
  • karen24623
    karen24623 Bee70

    Posted

    Hi Bee

    I'm quite new to this too, I have fibromyalgia too and the symptoms keep adding on as the weeks go by . Apart from the usual aches and pains in all the usual places , I've got blurred vision , hot flushes, thirsty, shakes , clumsiness, fibrofog , migraines and mouth ulcers , I'm on anti depressants and painkillers but frankly the painkillers do nothing , my family are quite sympathetic and help out with the housework as I work full time which keeps me focused . When you tell people why you don't feel well they look at you and say what's that and trying to explain it is even harder so I just smile and say I'm ok thanks .

    I empathise with you and all others sufferers as it's an invisible illness where there's no cure and yet to find a cause which is very frustrating .

    Do continue to visit here as sometimes fibro sufferers who develop other symptoms are not sure if they are linked .

    Gentle hugs to you and stay strong x

    • Bee70
      Bee70 karen24623

      Posted

      Hi karen24623

      It's quite endearing to know that I'm not the only one suffering and I am willing to try out new remedies if it helps me daily. Tiredness is my biggest downfall along with the pain. Totally agree with keeping ones mind occupied by going to work, but also remember to allow time for yourself.  It's easier said than done. I'm proof of it.......I have been told to slow down and if I have a list of chores to do and only did one a day that is an achievement in itself, but it's the slowing down of things I am finding hard to control. So I do take time out but sometimes forget and carry on.

      I have felt exactly the same as many other sufferers on this blog and I am shocked to see many of us are all experiencing the same.

      This may be the support that we can all share with each other.

    • karen24623
      karen24623 Bee70

      Posted

      Hi Bee

      Thank you for your lovely reply , I know what you mean about the chores I've tidied the house and done a bit of ironing and my body feels like it's been steam rollered , I do take time for myself I knit or crochet but this can cause pain and stiffness in my hands arms and shoulders. 

      Hopefully one day there will be some concrete help out there but until then we will have to rely on the support of each other . Take care Bee gentle hugs to you x

  • christine26761
    christine26761 Bee70

    Posted

    Welcome Bee, really feeling for you..it does a very long time to get diagnosed...you will get plenty of encouragement and support on here...family and friends are sometimes our hardest critics..must say though, mine not included ..in the past if I had  anyone who was very negative or nasty I just stopped bothering with them...hard enough without more....it's their problem not yours..they will never understand what your going through...sometimes it's just that they don't understand and want you the way you were..hence they say: come on you can do it...you used to.....I have a very supportive and caring husband it wasn't until 10years after my diagnoses that he came to understand as much as he wanted to fix me...he couldn't...so really know what your saying re: your husband..I've been diagnose now for over 22years and yes, probably had it longer than that as we all do...be blessed, have a great day..be blessed..:-) xxx
    • Bee70
      Bee70 christine26761

      Posted

      Hi christine26761

      It's been frustrating not knowing what was happening to me regarding the pains. Going to doctors, hospitals, private professionals and finally getting diagnosed with Fibromyalgia. Although I now know it's Fibromyalgia the pains still continue and looking for answers is another new chapter in my life. All I want is to be pain free and have a good night sleep. I am very calm but also very frustrated. 

      I do look back over the past 20 years and do count my blessings to be here every day and to carry on regardless.

      I too have learnt how to break away from negative people in my life and stay with the positive.  It's made me a better person to understand what I want for a change.  My CBT sessions have definitely helped me identify this. 

      I appreciate all the support. lol

    • christine26761
      christine26761 Bee70

      Posted

      I'm in Australia..I might sound a but stupid..but what is CBT sessions...???

      I was subscribed Amithripliyne years ago,,it's awesome I take one 25mg at night...I get a great nights sleep pain free..I realize.it's not good for everyone apparently, but works winders  for me..I never have had mine increased either..yes I suppose people could get addicted to them I've had them nowfor  about 16 years...they block the pain at the nerve end and stop it from Travelling to your next nerve-( all of your body)..apparently it was used for depression years ago, probably still do-they found it was excellent for pain...hence most of us with Fibro. Sjrones or CFS take it...I also have lots if natural stuff too......glad your on here Bee.,be blessed.,:-) xx

    • karen24623
      karen24623 christine26761

      Posted

      Hi Christine 

      im in the UK CBT is cognitive behaviour therapy , it's talking therapy and it's about gaining the knowledge of your core beliefs and understanding how to use techniques to manage your illness.its used a lot with mental health sufferers.

      i also used to take amatryptaline some years ago but found not much good , now on Nefopam and that's not working either . Take care x

    • christine26761
      christine26761 karen24623

      Posted

      Thanks Karen....that really makes sense...I do believe is being positive, even when I'm in the middle of it- especially a flare up.....taking ownership of it then allowing myself to deal with it..and liking myself in it all....it's really helped me over the years....sounds really good, just wondering if they have that over here...have a lovely day..be blessed..:-) xxx
  • tiswas24537
    tiswas24537 Bee70

    Posted

    its tough no one can see pain ,

    but we feel it every day 

    somedays i just want curl up and cry 

    othere days i feel brighter

    i get muscle and soft tissue pain /and skelton pain 

    and a number of the other symptoms including crushing fatigue

    .and some times feel i can t do it anymore 

    then i wake up one  morning and the pain has eased to bearable

    all we can do is our best .no more no less theres days i feel like a winge

    and then theres days i have a laugh . 

    i hope one day i will do more laughing then crying .cheesygrin

     

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