Hi all, I'm new here. Need help from those in the know of fms

Just wanted to say hi, my names neli. From London

I'm new here and have been searching for help and support for this damned fms that I think I've had for much longer than I've been diagnosed. I've also been recently diagnosed with PTSD. I'm at my wits end trying to find a good clinic where they understand this condition and it's affects on our lives, I'm also at my wits end with the benefits I've been on ESA for ages and can't do the d.l.a forms as i find it so overwhelming I'm also being crippled by the bedroom tax and in arrears. Oops I've gone on and on. Off to the doctors for yet another sick note. Soz to sound so miserable but ooooooo one of those days. Warm wishes to all my fellow sufferers may u have as pain free and easy day as possible. Neli :-)))

12 Replies

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  • Hi Neli xxxx

    Can't help you with treatments etc have never been offered any, had to sort myself out

    ..but I couldn't leave you without a *hug* a *hello* and a mmmwah

    ♡♡♡♡♡

  • Ahh thanks so so much n mwah n hugs right back at yah xx

  • Thank you so mush. Warm hugs n healing xx neli :-)))

  • Hi and welcome nelilove. Gentle hugs. It's posible that you had fibro before being diagnosed, it has a tendency to creep up on you before you realise you have it. You don't realise just how tired you've been getting day by day. You think you're coming down with the flu, then realise you've been struggling to keep up with work. Then you go to your gp who does tests, and when they come back with nothing wrong, you get labelled a hypochondriac. So welcome but sorry you are a member of the fibro club. Good luck sorting out your meds. And Really Good Luck with the dla forms and the Horrendous Bedroom Tax - I wish you all the luck in the world dealing wwith that! On top of having to deal with fibro you have that to deal with! But I am sure there are people on here who will be able to help you with all that, or at least point you in the direction of help. So, I will just say welcome and Big, Gentle, Hugs, Julie xxx

  • Thanks ever so much it's just nice to know I'm not goin completely bonkers n other people here know how real it is n how hard it can get. It means a lot just to have n share some positivity. Warm wishes. Neli xx

  • Hi Julie. Thank you for your kind and definitely on the mark words. Warm regards n healing. Neli xx

  • Sorry to hear of your struggle with all this. You will get good advice here (not always from me) have you been in touch with CAB they can advise you about the best way to tackle all the forms and what to claim. I too was diagnosed with PSTD, I was sent for a course of EMDR (eye movement desensitisation reconditioning) and would recommend this, I will say it does feel odd at first however it did help me. Wishing you all the best. Lou x

  • Thank you Lou. The PTSD thing is new on top of fms and I'm feeling quite overwhelmed lately. The people here like yr self seem so kind and definitely understand. I think my family must think here she goes again. I will check out the edmr. Again thank you and warm wishes. Neli xx

  • Hi there

    Just wanted to say hello and oh boy do I know how it feels to be at your wits end.

    I'm pretty much there myself at the moment.

    I wanted to send you a hug.

    You will find so much help and advice on here. Just ask away anything you want to know.

    It's just a suggestion but maybe if you list the issues and advice you want help on you could do some separate posts so you don't get confused.

    This is only my suggestion and others may say differently so it's obviously up to you.

    Good luck at the GP.

    xx

  • Thank you. I'm blown away by all the lovely replies and welcomes on here. It's so surreal to read peoples symptoms so much like my own and to know its real and affects our lives n that of our families so much.

    Thanks for my hug and I'm sending you a warm healing hug right back.

    Warm wishes. Neli xx

  • Hi Nelilove

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum, and it is

    wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I think that you will find that everybody here on the forum can, and will, understand exactly where you are coming from. So I genuinely hope some of the ladies can come along and give you their experiences of Fibro?

    I have pasted you a link below to our mother site, FibroAction and I genuinely hope that you find it very useful? It has loads of useful Fibro information on the site from symptoms, treatments, benefits and groups:

    fibroaction.org

    I was wondering what medications you were on? And do you see a Physiotherapist? Or attend a Pain Management Clinic? Or see a Rheumatologist? As these Specialists can help with your Fibro? It may help to discuss referrals with your GP if you are finding that your medication is not helping your condition?

    DLA is now being replaced by PIP for new claimants, and there is help and assistance available from the CAB (Citizens Advice Bureau) if you have problems with forms? Or alternatively you could approach your local Social Services and they can offer you help? The link below is called How To Claim PIP which is Personal Independence Payment, this is a non taxable benefit and can be claimed regardless of whether or not you work and is payable on how your disability affects your life:

    gov.uk/pip/how-to-claim

    I have pasted you a link to the Citizens advice Bureau Benefits Advice Guide:

    adviceguide.org.uk/england/...

    I want to wish you all the best of luck, and if you ever have any questions that need answering please feel free to post on the site or ask any (via a Private Message) volunteer administrator who will be more than happy to assist you. I shall look forward to bumping into you around the forum.

    All my hopes and dreams for you

    Ken x

  • Thank you so much, this information is so valuable to me I'm starting to feel less afraid to claim now.

    I got diagnosed officially about 7years ago and I've been on tramadol, pregablin, mrtazapine and statins. I've also been recently diagnosed with p.t.s.d. At first the tablets worked great as I'd previously been taking solpadeine for about 2years but now the pain is constant there never seems to be a day there isn't something. I only see my g.p and I'm under a consultants clinic but I've only been twice it's hard to know who or what to ask for. I find it all too much sometimes but I'm trying to fight back for my health sake and I'm already feeling a bit more confident thanks to the support and info I'm finding here. So once again I can't say thank you enough.

    Warm warm wishes. Neli :-)))

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