Newley diagnosed

Hiya..

Just been diagnosed with fibromyalgia, after myself an Drs thinking I have lupus... 

I'm just wondering what to expect from this an what the illness actually is as Drs make out to me it's all in your head... I'm in agony every single day an have been for the past 10 month.. 

I have had to now work part time from working full time, so wondering is this actually a disability where I can claim for pip? Or do I just have to suffer an go back full time! 

Need all the info I can get!! 

Please help.. 

6 Replies

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  • Hi and welcome to our wonderful forum.Im not familiar with UK law as I'm from US..Someone will be along with help soon!! You may want yo lock your post see Blue pin right hand of page for info.Have a good day!! Peck.😊

  • Hi there

    Welcome to the forum :)  As you are newly diagnosed it would probably be very helpful for you to have a look on our mother site, for lots of information fmauk.org

    You ask what Fibromyalgia actually is.  That is an extremely good question!  Unfortunately there is not a straight forward answer.

    Fibromyalgia is a condition that is caused by lack of restorative sleep. The main symptoms are lack of sleep, pain, fatigue and depression.  On top of that many of us also have other chronic conditions as well.

    I have a list of about 28 different symptoms that have jumped on the Fibro bandwagon for me, but if you speak to someone else they may have a completely different answer.

    I am in constant severe pain and have had Fibro, Chronic fatigue etc for over 30 years and worked for 34 years full time.

    You can put in a claim for PIP and ESA but they are not automatically awarded to people who have Fibromyalgia.  I will give you a link that you can click on to read up about PIP and other benefits.  On the PIP one you can fill in an online questionnaire to see if it is possible that you may be awarded PIP.

    * Apologies I forgot the second link.  Here it is:

    healthunlocked.com/fibromya...

    Getting PIP and ESA is not easy.  However, it is worth applying to see how you get on.  It may be worth your while to put PIP into the search bar at the top right of your screen and read a few posts about PIP.

    If you do decide to apply for it, please let us know and we will help you through the process.  I am thinking that if you are working and apply, your claim may be thrown out as you are fit enough to work.  Well, that is the way that the DWP will see it.

    I hope that this has been of some help to you.  I don't want to overload you with information, so will give you time to digest some of this.

    Locking posts is a very good idea.  I will pop back and give you a link that explains all about why we lock posts.  **

    I look forward to chatting with you again.

    Wishing you all the very best

    Lu x

    Admin

    ** healthunlocked.com/fibromya...

  • I will just say hallo and welcome.  I won't add anymore as Lu has alrady given you a marvellous answer.  Look forward to reading your future posts.x

  • Hi Leanne21bull

    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 am so genuinely sorry to read that you are suffering and struggling so much and I sincerely hope that you can find some resolution and relief to these issues.

    I can see that Lu has given you a wonderful reply, and I would definitely apply for PIP and see what transpires?  I want to genuinely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Bless ya hunny PIP yes you can claim but they don't give it all I am re applying as I lost appeal the pain is not in your head well it is lol the pain receptors are on high alert all the time then we have moving pains plus the standard pains did they do the prodding your collar bone n legs test lupos has many similarities but with lupos the body attacks itself and eventually destroys it's vital organs  , my brother died of lupos 30 years ago when it was thought of as a girls only disease and my best friend has been suffering it for 15 years. Fibro is hard and debilitating but thank the lord it's not lupos. Xxxxxxx sending so much love your way, the thing with fibromyalgia is that it attacks in so many different ways and you seldom get it alone, so although we all suffer pain n brain fog exhaustion and feel weak and fragile at times it is different for us all so things like meds and what we are physically able to do differs too. This is an amazing site where you will get loads of support from empathetic people so many of which make me smile, the best thing is your not alone and no one on here thinks it's not real so many of us have felt like hypercondriacts on doctors visits, it is a real illness and new stuff is being found out all the time about it, ps welcome to the caring sharing site xxxxxxxxxx

  • Thank you all for your well wishes & comments.. I have been ill now for the past year from being admitted to hospital for a week and having to use a wheelchair now and then when i can barley walk!

     As i have literally just turned 21 last month, this is a big thing for me, from drs thinking I have nerve damage, then being told they think I have MS, then ending up going private and being told looks like I have Lupus! 

    My results came back a month ago but my rumotologist got back to me yesterday and saying not enough results came back positive to say I have Lupus, so he is putting it down to Fibromyalgia, I had a positive ANA which came back 400, normal is 1:40 and my IGM came back positive.

    I have only been with my partner for 15 months and majority of that I have been very ill so it panics me with how he feels and thinks of all of this.. Normal girls my age are having there time of there life going out partying, shopping and going on holidays.. But I cant do none of that which gets me very low, just knowing im missing out on so much.

    I can barley walk as my ankles are so swollen and i have extreme pain all over my body, but i still push myself to go to work on a daily basis even though i have now put my hours down to 4 hours a day, its still a big thing for me, I still drive even though it kills me, and i still do the normal daily house chores an cook for my boyfriend just like I dont have an illness, but then im bed bound, just like today.. I went to hospital for xrays on my lower spine, luckily enough my sister was with me as I ended up collapsing on the floor from not using my wheelchair, so now i am off work sick and in bed! 

    I just wish for the day when I can get back to my normal self, going on holidays and back to earning a normal salary instead of struggling alot... But maybe this day will not come..

    x

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