I’m a Newbie.

[Deltaromeo]

I’m a newbie here!! I hope it’s ok to rant a bit I have been told today I have fibromyalgia although I haven’t seen a rumatologist (spelt wrong) yet. I have eplilepsy so have been started on a low dose of pregabalin to help with the pain.

Seeing different doctors is really hard as I have to go over things again and again. I saw a great doctor last week and he was very thorough he has taken bloods for everything and all came back ok, so they have now said it’s Fibromyalgia. I seem to be having pain everywhere some days better than others. This has been going on for years it’s taken this long to suggest Fibromyalgia.

My concern is that I am not working since I closed my business in April, I can’t seem to find a job where my pain can be managed, I can’t sit for long I can’t stand for long I can’t walk for long. I’m looking for something to accommodate this. What does everyone else do? My husbands work has dried up. so no money coming in so I am feeling useless, depressed, angry and many more feelings.

Are people with fibromyalgia able to claim PIP?

Sorry to go on I’m just feeling a bit lost. Thankyou

[Hidden]

Hello!

You can apply for PIP, ESA and a Blue Badge (if walking is difficult). It’s nice to hear from you, sorry about your diagnosis and pain though. Do you have painkillers as well as the pregbalin? Co-codamol (on prescription) helps me a lot. God Bless You, Emee x

[Deltaromeo in reply to Hidden]

Thank you. I will download pip and see how I get on 😃

[Mandypandy1969]

I managed to get pip but in standard living. I am on e.s.a. also. it was s nightmare getting my e.s.a. back as it was stopped. I appealed and ended up going to court 11 months later which is ridiculous as my condition has got so much worse. I was in the support group, now I have been put in the work related activity group which is ridiculous as I can't see myself working again. I had to see a work coach at the job centre today and sat there in tears all through the meeting with her. she was lovelyand saw how distressed I was. she doesn't want to see me for 6 months now and has told me to get in touch with benefits office to tell them how much worse my condition is. I would apply for pip if I was you. we should all get what we are entitled to when we have a lifelong debilitating disease. I am still awaiting another diagnosis for sjogrens. also I have early onset of osteoarthritis in my right hand and foot. I feel so depressed and useless all due to this disease and my mental health problems which are getting worse because I am struggling to deal with this awful disease.. good luck. go for pip. xx

[Deltaromeo in reply to Mandypandy1969]

Thank you x

[Hidden]

Yes, you can claim PIP and ESA pip new claims phone no 0800 917 2222 go online and download the pip scoring descriptors pdf it's on there somewhere, pip is based on point scoring system for certain activities good luck

[Deltaromeo in reply to Hidden]

Only trouble with doing a claim is some days I am better than others

[rach1402]

Hi, rant away, get it off your chest! We understand what it's like to live with fibromyalgia so we don't mind here. One of the most important things you can do to help yourself is to find out how to pace yourself and read about the spoons theory. There's plenty of information online if you Google it but don't want to ramble on too much here.

Many sufferers can't work but I'mstill working for now and hope to continue if possible. I work as a lab technician which allows me to be reasonably active without pushing myself too far. On good days it's ideal but on bad days it's too much for me so I'm reluctantly moving to a lab analyst job soon, which still allows for some movement but unfortunately not as much as I would like. I don't really want to take a step back because I've also got ADHD and I need to keep my hands busy so hopefully I won't just be stuck in front of a computer clicking a mouse all day.

As for benefits I can't advise you on that as up to now I haven't needed to apply for them but there's no shame in it and I will if I have to. I tried pregabalin but it didn't agree with me but as it's an epilepsy medication hopefully it will suit you better. I take co-codamol and it takes the edge off the pain enough for me to function most of the time. Sometimes you just have to stop though and there's nothing you can do but rest otherwise you'll suffer for ages. Listen to your body x

[Deltaromeo in reply to rach1402]

I will definately ha e a look at the spoons theory sounds fun lol

[rach1402 in reply to Deltaromeo]

Not as fun as it sounds unfortunately but I admire your positivity x

[Deltaromeo]

Thank you. Each.

[Deltaromeo in reply to Deltaromeo]

Thank you each lol not sure what I meant to write. But Thankyou 😊

[Debbs73]

Hi . I also suffer with fibro and hematomacrosis an claim pip and esa. One thing I will say is when completing the forms for both of them, you'll find yourself repeating what you've wrote to previous questions. You may want to get some advice from the cab they are very helpful and gather as much medical evidence you can from heath professionals that you've seen. An we all have a rant from time to time, the good thing about these groups is everyone can relate to each other as we're all suffering .🙂

[Deltaromeo in reply to Debbs73]

Thank you. Lots to learn haven't I lol. 😁

[Hidden]

Hi hun- maybe make a start at your local job centre and ask for an appt with an employment officer to discuss your needs and rights.. Ive understood for a while that Pregab and Gabapent are being prescribed for pain as well as epilepsy, IF you find the dose isnt controlling your pain then back to g.p and insist on referral to a rheumo or neuro doc, dont take NO for an answer, also ask g.p for some conventional pain relief safe to take with Pregab to help you along until you are seen and properley diagnosed,, once diagnosed you should be able to apply for PIP and during your unemployed time claim ESA-ask the employment officer how to do this. Good Luck, keep intouch lots of help on here.

[Deltaromeo in reply to Hidden]

Thanks for advise very helpful 😃

[Usandthem]

Hi rant away😂we all need a good rant and it is a good release! I take a combination of pregablin and duloxetine (this was advised by rheumatologist as a good combination for pain relief) you can apply for PIP but go to CAB they are great for providing support regarding benefits!

Try to be positive re employment there is a job out there you can do😊I work full time and have been diagnosed for over 10 years. Hope you find some relief stay positive and remember rant away! We are here to listen. Sending you love and peace ✌💕

[Deltaromeo]

Thank you.

[Mdaisy in reply to Deltaromeo]

I see you've had a lot of helpful replies so I will just say hello and provide you with a couple of links. Welcome to FMAUK community! As a newbie I notice your post is not locked to this community only, usually members prefer posts to be locked and it generates more replies. Here's a link about how to lock posts to the community...

healthunlocked.com/fibromya...

Enjoy chatting and you should gain lots of online support here

Emma

[Spacecat1]

I think you can claim.pip have a look at their point system on line it shulfe