Fibromyalgia Action UK
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Aaagggghhh

Got my pip assessment in less than 2 hours, I'm terrified. And on the one day I could of done with being on a bad day I'm feeling great! Only my knees and ribs a bit sore thanks to this lovely warm weather... Which I am very grateful for, just not this morning 😂. I just wanted them to see what it's like usually. Help!!!

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Good luck I was in the middle of a bad flare and on another planet when I had mine so I was fortunate in that respect. Remember to answer the questions as though it was your worse day. Remember you will be observed from the moment you get on the carpark and when you go out they are sneaky like that. Let us know how you get on.x

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Thank you, it's at home.. Thankfully. I'll let you know when they leave. What can I expect from the assessment? I've never had one before xxx

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They will go through all the main points that you outlined in your form. Have your forms of ID and any evidence you haven't already sent ready otherwise they ask you to get them so they can observe walking. Emphasise your difficulties eh pain and extreme fatigue when carrying out everyday tasks. Even if you have no one to help you with the tasks say what you struggle with eg having to rest after each movement like getting out of bed, resting then having a wash and throwing etc it causes and then having to rest again. Having I hold onto furniture to support you. Have you got someone who could answer the door for you?

I have to go unfortunately as I take an elderly friend out to a book club on a Tuesday, I'm thinking of you.x

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Hi try no worry some assessors are ok .as rosewine said and try get answers across try no do much in front of her as if a good day they will monitor you to see .and mind the walking mobility wot ever effects you .upto 20 metres or upto 50 metres the fresh holds.wot ever one it is stop for a wee rest say 15 metres if 20 apply s or 30 to 40 if 50 apply .hope it goes ok .

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Thank you, feeling like I'm going to have a heart attack I'm so nervous 😣

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Ha ha it's no funny I know .I'm glad it is a home visit it really does help try relax .I have been on a few home visits for support and most of the time it has been fine and good assessors.

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Sorry to bother you again but will they ask me to do stretches or walk? Xx

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Hi they can but my experiance they did not and just said I can see your in pain .if they do say your in to much pain and if you do you will be in pain for hours and take your time to do it and if to painfull stop .hopefully they do not look in PAIN lol.you can be in bed allowed if not. chair or setee if chair or setee be restless moving with the pain and slow to get up etc just do it .they bring their computer out and go over your forms for anything they are not sure of or discrepancies etc and will ask you a few questions on them hopefully not to many .take your time and be clear about pain when walking and ALL the help and care you get for washing and dressing etc aad help with meds .hopefully not to many questions try relax if you can for your points to come across .YOU ARE IN PAIN THE NOW TABLETS DUE AS MORNING ONES WEAIRING OFF DUE AT 1 PM.wee tip

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Good luck with your pip assessment hun, I hope it goes well. Please let us know how you get on. Take care x

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Thank you, what will they ask me to do physically? Got palpitations now 😢

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Oh bless you sweetheart, try not to worry hun, I know it’s easier said than done though. They asked me to stand up from my chair but they could see how wobbly I was I was told to sit back down pretty quickly. That’s all I was asked to do physically. I was there for half an hour and she kept apologising as she could see I was genuinely in pain.

Even though you may be having a good day just remember what you’re like on a bad day and act like you are if that makes sense lol.

Just take some nice deep breaths and I know you’ll be fine lovely xx

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They didn't turn up 😢 I got myself so worked up and can't stop crying now 😢 xxx thank you for the reply though xxx

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Oh no how annoying and incredibly frustrating! Did they give you a reason why they didn’t come? It’s the sheer frustration of it so I’m not surprised you’re crying bless you. Just try and get some rest now lovely xxx

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My husband rang and they just said to ring back tomorrow as the health professional will have put in a report on why they didn't come by tomorrow. Then will reschedule the visit, I don't know if I can face all that stress again. The reason they were doing a home visit is because of my anxiety 😢. Thank you for replying, it means alot xxxx 🤗

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I really do feel for you hun. It’s ridiculous why they couldn’t have told you all of this earlier in the week, not waiting for you to phone them and let alone allowing you to prepare for the appointment and furthermore causing you more unnecessary anxiety! Feel free to talk anytime you want to lovely and don’t let them get to you. Love and gentle hugs xxx

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Hi everyone I'm new to all this . Been living in pain for 7 months not knowing what it was. Got a pip assessment tomorrow and dreading it. Osteoarthritis is what they thought it was but all been ruled out eventually. And now maybe getting answers with what it actually is . Let me know how you got on please

Many thanks

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Good luck on your assessment x

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Thank you I think not knowing what pain was is the worst thought I was dying of

cancer or something. Depressed to say the least my whole life is now changed and I love work . Living on universal credit is a total joke . Everything I have is all symptoms of fmb but doctor said it's a grey area although I've showed all symptoms of it which points to it but cnt diagnouse it ?? I'm confused but reading and finding out more each day helps .anyone else just feels like there life is over what's the point . Pain . Tablets cnt work it's so downgrading

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Hi Qwertyyuilp,

Sorry to hear how bad you are suffering and yes it takes over life and doctors don’t like to diagnose it. I’ve been suffering for couple years now (think longer but difficult to tell as I had polycystic ovary syndrome which took me about 20years for Doctor to confirm and then another battle to get consultant to agree to remove ovaries) all doctors and rheumatologist keeps say it’s all part of Fibro but none will actually confirm that is what I have! Past year I have had a lot of time off work had a reduced hours fit note but was signed off yesterday as had melt down on phone to the doctor so back for bloods again and see if they do anything. Amitriptyline 50mgs I’m on has helped ease the pains but not gone unfortunately. Some say acupuncture works so not sure if this is something you have tried? Being on here a couple of days has helped me just knowing you are not alone. Sending gentle hugs 🤗

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It does help reading this others going through same . Do you or others go to help groups is they many out there ? In 7 months I've had two weeks were I thought what ever it was had gone . Now returned with anger bloody thing . Been giving tablets not took these ones before would like to know if anyone else has tried them . Said they would knock me out but having assessment I'm not sure to start them gabapentin low does at 100mg to start she said ?

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I was looking at groups and if you go on the fibromyalgia action uk website they have links to different areas and contact for support groups. Trouble is most are during the day and up until yesterday I was full time (but off sick a lot) then I found here. You can also join the main website too and more people in there.

I’ve not tried those sorry. I was given amitriptyline for pains and mirtazapine antidepressant. Both I take at night as make me groggy and able to get some sleep. X

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Can you not ask for second opinion from another doctor there are so many symptoms of Fibro that each symptom is treated separately ( mines was) instead of a whole. I was lucky I had a doctor who took the time to look at my notes along side blood test then got diagnosed may 2017 , I think personally that not enough research is going in to fibromyalgia, CFS you have to keep fighting and your flare will pass depression feeling down on yourself is all part off it it will pass big hug n I think the secret to Fibro is learning to live with it and do what you can on good days and rest on your bad days

Take care n hope you feel better soon

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She read my notes and said everything does point to it but it's a none diagnoisable and a very grey area been referred to mental health so I'm hoping talking about it might help . They have ruled all others out rumatiod etc now with bloods they took x rays yesterday but is it simular to MS ... I just don't know but least now they are doing something thanks for relpys x

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Hope they diagnose you sooner rather than later xxx sending big hugs xxx

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Yes it is similar to ms say to mental health consultant what you think is wrong and see what they say x

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Breathe! Just try to explain the levels of pain rather than good day bad day as I’m guessing that you like myself and others the pain is always there along with the foggy brain and exhaustion just some days it’s easier to cope with? My friend went through assessment and that was how she explained things. I’ve not gone through it myself as was just managing to work mostly full time until yesterday where I got signed off as couldn’t cope anymore and I was sobbing down the phone to the doctor! Feel an idiot now but clearly needed the outburst as now looking at bloods again to see if anything else going on. Sending hugs and support for you especially today x

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I've a really bad flare up at moment so I suppose it's landed good for assessment. Sorry to hear you have had to finish work . Xx

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Not feeling great now, worried myself into a frenzy... At least they will be able to see my anxiety 😲

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Nobody turned up 😢 I'm so stressed and can't stop crying. I'm going to have to go through this all over again 😣

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Oh no..... Have they texted or have you a miss call to explain why they haven't turned up? Do try not to get too upset if you can help it, I know it's difficult as I had mind recently and always try to think it may be a blessing in disguise as they say. ;)

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Thank you xx I fell asleep for a couple of hours so feel less stressed now, I did have a missed call.. They rang off before I could answer and didn't ring back or leave a message. My husband rang and they said to ring back tomorrow. Xxx

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Glad you feel less stressed now and you can rearrange - my top tip is not to mention 'good' days v's bad days as it seems assessors think good days mean fit and healthy. I would use mild to severe symptoms and that chronic pain always means you cannot do activities of daily living like a healthy person can. Explain that it is difficult to manage tasks all the time but if severe it is extremely difficult or near impossible if that relates to your experience of Fibro. Hope this helps :)

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❤❤❤

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