trying again

I was diagnosed with fibromyalgia 11 years ago, my doctor told me that not all physicians see this as a genuine medical condition and I was pretty much told that 'there's nothing we can do' and was sent on my way with amitriptyline, (which had no effect) I had learnt to live with this and crack on with life (when I could stay awake) until recently I noticed that (with thanks to social media) more sufferers are coming forward and fibromyalgia is more common,

For me this is a condition that you can feel and not see, like mental health illness, I think it's hard for people to understand what you are going thru, as they can't see it,

On the outside you look like anyone else, on the inside for me I feel like a old lady most days,,,,,,

Now fibromyalgia is more common I am going to see my GP and start getting some treatment and a referral to a specialist.

Wish me luck !!!!!!

17 Replies

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  • I found in the 19 years of my dx there has been very little in the way of pain relief. Early this year i asked to see pain consultant. He has been a big help. Even being in a dr's office with a doctor who knows fibromyalgia and believes in you is wondwonderful.

    God bless

  • Hi Tomsonsere, welcome. Sorry to here your story, yes its difficult for us, & many others with silent illnesses. Its good to have people to chat & compere symptoms with I find. Hope you can get through to your gp, good luck, hope to hear from you soon.

    xx

  • Sorry I spelt your name wrong!!!

  • That's ok, my name is Lisa

  • Hi Lisa πŸ˜€

    I can completely and utterly understand what you are saying, I was diagnosed at 17 with "fibrositis" (which is what they called it back then) and I thought it was just muscle pain which probably everyone had. It wasn't until about ten years ago that finally my brilliant GP brought it all together, and this was within three weeks of my transferring to him. By that time I thought I was going completely mad, with the pain, migraines, exhaustion and depression, I couldn't comprehend how someone with "nothing wrong" (outside of a couple of other medical conditions which alleluia - were recognised ) could exist, - I surely was mad !! Within that one consultation my world turned around and with pain management, rheumatologists and neurologists all now in the mix I am managing my life, albeit very differently and sadly without being able to work.

    So Lisa, I can say without a word of a lie, you have found the very best possible forum to come to for help, support and encouragement and know that everyone here "gets" you and we will be here for you to help you through your journey. A few of us find that humour releases feel good endorphins and you will find that our illustrious administrator grinding ( I shall leave my error just to show how stupid I am - but it should of course read Ginsing ) starts the day off with coffee and some fun, so pull up a chair as dear gins says, and join in wherever and whenever you feel comfortable to do so, but you will find nothing but support of that I can assure you.

    Sending lots of positive, healing and strengthening vibes your way πŸ˜€πŸ˜€

    Foggy x

  • Lovely sentiment foggy,, totally agree, it's so nice to not feel alone anymore even when surrounded by people!!

  • What a welcome, thank you, I'm good at the humour x

  • Well that's great πŸ˜ƒπŸ˜ƒ come and join in the funπŸ‘πŸ»πŸ˜ƒπŸ˜ƒ

  • Hi Lisa

    Just wanted to wish you a warm welcome 😊

    You probably already know this, but just in case, you need to ask your GP for a referral to a Rheumatologist for a definitive diagnosis.

    There is a lot more available now for Fibro sufferers including medication, CBT, Pain Management Clinics, Physio, Hydrotherapy etc.

    Good luck in getting your diagnosis

    Gentle hugs

    Lu xx

  • Wow, thank you for your lovely comments and advice, to blue mermaid, thank you, I have been diagnosed by a rheumatologist, it was my doctor that didn't have a clue at the time, πŸ˜„

  • You're so welcome 😊. It generally is the doctors who don't have a clue about Fibro, although of course there are wonderful GP's out there who will get your medication in the right balance.

    If you don't have a good GP now I would highly recommend you look for a new one, as they are the ones that will have to refer you to most of these services.

    Take care of yourself

    xx

  • i have had years of visits to GP telling them I suffered so much pain in leg when getting up from sitting or out of bed but when finally moving you would never guess from looking at me I was in so much pain. With long standing nerve damage to my back they would put it down to this..but suddenly my GP has said "fibromyalgia"! I sighed as felt this problem finally has a name. Now been reffferred to rhuemotologist on June 8th and GP explained i will undergo series of tests which will be done over course of months..I do not know what is going to happen yet test wise but feel at last something is being done.

    I also dug out my tens machine and starting using that on Thursday evening..puting electrodes down affected leg and leaving it pulsing for a few hours have to say it has actually made a tiny difference so going to keep on with that.

    All I can advise is listen to your body..good days do little and often..bad days just take it easy or if like me...sleep!! I have never ever slept so much in my life but have to say it helps.

    So unfair this condidtion as I look so well.

    My problems escalated when I lost 5 stone and I keep wondering if I should have stayed original weight...simply cannot win.

    I hope this is of help and that my experience is of use to you.please consider a tens machine..well worth a try and if it does not work at least you have given it a go.

    I will try anything just to get relief.

    Now to tackle the toilet side of things..onwards and upwards we go!!!

  • Hi tiredmamma, (I can imagine a good name for how you must feel !!) πŸ˜€

    Hopefully your rheumatologist will do the trigger point test amongst others which will give a pretty good lead to the diagnosis, but you are certainly doing the right thing using your tens machine in the meantime. I'm glad that you find sleep helps, I wish it would for me, but each of us is different.

    Losing 5 stone sounds like a pretty enormous shift in things, did you have that much to lose and has that helped to any extent ? A lot of the medications used to treat fibro have the delightful side effect of weight gain, which I can't cope with personally and I know others to whom it is a bit of a bug bare.

    I will most certainly be sending you positive vibes for you appointment on the 8th June and some more to tide you over until then πŸ˜€πŸ˜€

    Foggy x

  • It's like reading my own diary, I'm the same, I look like a healthy 40 something, yet the idea of a mobility scooter at the moment soundps great πŸ˜‚πŸ˜‚πŸ˜‚

    Be well, sending hugs xxx

  • Hello Lisa, welcome to the group I'm sure you will find lots of help and supported from everyone here. Just knowing that I was not alone and most of the group also have fibro and were going through the same thing was and still is a great help for me.

    Hope today finds you a little better than yesterday.

    Blessings Be

    Drew

  • I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi. I know. I worked in the health service as well. So doubly know the nightmare of any new disease. Look up the National Institute for Clinical Excellence (NICE) guidelines. They decide on treatment for all health issues in the UK. U can find out there if urban gp and specialist is giving u the accurate treatment. And also the IC10 : International Classification of Diseases and Related Health Problems 10th revision. It classifies health problems. And they charge it according to research. we definitely need more research. So the more we give details to the doctors and complain about the very many symptoms that will increase the statistics and force research in fibro. X

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