Fibromyalgia Action UK
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p.i.p first time

hi everyone been diagnosed with fybro and hypermobility, also suffer ibs depression anxiety numerous others, its all a shock to me for me for years been back and forth to docs with no one taking me seriously until I self referred to see a specialist who diagnosed me finally within 2 appoints, iv never claimed sickness benefits but have had to do so, I am so anxious waiting for brown envelope, its making me ill and there's nothing I can do but wait, its literally driving me nuts, I had to have a medical and since then I cant stop thinking about whether they will deem me ill enough to be awarded help! which is hard for me to think about,speaking about all my needs was so hard, its been a big wake up call how I struggle day to day with pain and instability now Its really getting me down to the point I cant do anything constructive has anyone felt this after medical? any advice please

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Hello blueyes2949 and a very warm welcome to the group. So many of us have been through the waiting and wondering. And many more are going through it right now so we all understand how you feel. Fingers crossed it will be the outcome you are looking for.

You may like to take a look at our FMAUK website it has loads of helpful information you may find useful. fmauk.org

I see you have not locked your post. You may not be aware you can do this if you wish to. It helps keep what you post private to this community. Also most members prefer to reply to a locked post.

This link will show you how to lock it if you would like to.

healthunlocked.com/fibromya...

If you need any further help please don't hesitate to ask. I hope you have a very pleasant day xx

Momo

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Hi Blueyes..

Welcome to the bunch. Sorry you are here if you know what I mean... but it’s a great place... the forum that is 😊

Most of us have been through this anxiety that you are at the moment... it drove me nearly insane.... try not to worry as if they don’t seem you suitable you can appeal.

There are plenty of lovely helpful people here who can help you.

Kick your shoes of grab a coffee and get entwined in all the posts.

Healing hugs xxx

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haha thankyou very much, yes ino what you mean its so scary trying to come to terms with it all and at the same time asking for some help and the waiting all the waiting is driving me nuts now I finally know what is wrong I want to get my life back on track but at the moment I'm in limbo, a year of tests years of not being believed and now waiting on someone who I don't even no to tell me if I should have help its mind boggling, exhausting and all I can do it wait, sorry ranting on and with the bad weather we have had no mail either its so annoying xx

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It’s okay to rant we all do it especially me.

It seems a relief to get a result from the dr but then the real battle starts... I just hope you have good family and friends who are supportive. Sadly most of mine are dismissive ... but my brother is good... but you have found us lot now ...

Hating the snow at the moment... so cold and can’t get out!!

Healing hugs xx

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exactly same situation as you to be honest, my sister is my life line but everyone is dismissive, i love my family but they don't help, i really hope that now I'm diagnosed i can mange this better and get some help which would be a great relief, i hadn't even realised how bad i got with fibro until i had to answer those questions at assessment sent me very down a sad realisation that this isn't something a pill or rest can fix, its not like i don't want to go out and enjoy things i miss being active so much now, its bitter sweet a diagnosis after so many years, i havnt attempted leaving house with snow hopefully rain will wash it all away late finally loooool xx

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I think we all go through those feelings ... I was so pleased to be diagnose... but then went on a downer... This is my life... This isn’t how I planned my life... What did I do wrong to get this... and sometimes I still want to scream.

Look up the spoon therapy I will try and send you the image... helps you realise how much each thing can take and basically... pace your day.. be kind to yourself.. life is different now but look at it as an adventure not a disappointment ... try to stay as positive as much as you can... all helps with mind set which helps us physically as well. (I think so). If it too hard to complete in one day spread it out to two or three.

Most importantly ... love yourself as you are wonderful xx

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thankyou so much i thought i was losing my mind for a while there so nice to know its not just me feeling like this, that's exactly it isn't your life has to take different path from the one we planned so its all about adjusting. i will try ny best to adjust to it all instead of feeling so hopeless about losing control xxx

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You will have good days.. but try not to burn yourself out as you will say... hey I feel great and do the washing, vacuum the floors, maybe mow the lawn.. and then be burnt out for several days... so pacing is good .

But please be aware of flare ups... there can be nasty so ... find something you like to do while resting.. a good film, read a book , sleep lots , meditation... I do breathing exercises when it is bad... get comfy... mine is like having bad flu the pains all over my body.. but we all get it to differing degrees. Know it embrace it and ride it out... it won’t kill you, be prepare to feel low but remember the positive mind and that will help.. flare ups don’t last.

Healing hugs xx

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im learning that myself everyday now, I hate pacing my self I'm naturally impatient so this is torture, story of my life feel good do lots of catching up feel shit for 3 times as long, 2 step forwards and 3 back, my local g.p is hopeless I tend to avoid him but when I see my specialist again I will mention pain clinic, its not a nice feeling at all is it like flued up bad as soon as wake up most days so feel you there and I always look like it as well, I'm sick of looking sick so to speak hahahaha xx

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You're welcome to rant here. Most of us have done and/or will do it in the future.... Venting is necessary when dealing with the DWP. *Gentle hugs if wanted*

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For some reason I can’t post it... but look it up on the net and you will see it under images xxx

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Hi JacquiRo

Unfortuntately you cannot post images into the thread only links. This might help explain to blueyes2949 but the site might have a different to the image you have.

me-pedia.org/wiki/Spoon_theory

Hope this helps

Emma :)

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i looked it up thanx really helpful for me that is its hard explaining it but the spoon theory is a really good way x

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I know thanks Emma x

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Oh meant to say... get in touch with your dr and insist on going to a pain clinic... there will be a wait... like I am waiting... but they may think of something different that can help you that you don’t already do or thought of to help xx

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Yeah, having to think about and write down all the stuff we can't do is depressing, upsetting, and makes me grieve my old life all over again, every time. Having a stranger ask us probing questions about it, often not very nicely, makes it worse.

If you don't get an award, it makes you feel like shit. So I'm *not* disabled? Am I just weak then? Lazy? Or... Do the assessors and the DWP think we're dishonest fakers (ouch, and hey! WTF?!)? Are they actually this incompetent? Or are they doing it on purpose? If the last, they're willing to pay good money to torture us (their costs far outweigh any savings)! Or even worse, we're so unimportant, so beneath their notice, that they don't even think of us at all? Oof.

You ask for the assessor's report, and it's so badly done that all you can do is sit there and wonder whether to scream in fury, laugh hysterically, or burst into tears. You start to blurt out things that *sound* like conspiracy theories, and wonder if you're becoming paranoid. Or, again, do they

So we lose our money, often have trouble eating, paying rent, etc., and I, for one, end up deeply in debt to friends. Some people we know (my bloody DAD, for one) assume that having our benefit removed means that we've been exaggerating or even faking all this time. The constant financial stress wears at us. We ask for an MR, and it almost always comes back with the same decision, sometimes before we've had time to send in our response and further evidence (ARGH!) Such a lack of respect... We apply for a Tribunal, and it gets accepted, but then we learn that it'll be 8 months until our court date. That's 8 months without our benefit, 8 months of severe financial stress, 8 months of asking friends for more loans, quickly mounting debt.

Finally, the Tribunal date arrives. We're panicky, terrified. We win ~70% of the time, but what if? Oh thank God we win. We wait anywhere up ton8 weeks for the bloody DWP to send our money, with back-payment. When it arrives, we pay our friends back. We sleep for a couple of days. We start the long road to recovery from the trauma.

My MH takes a dive every time.

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