I could use some advice..... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I could use some advice.....

Gulfstream_Maggie profile image
16 Replies

I'm not sure if I should be considering an application for PIP.Up till now I've been working full time, although home based.

I can't lie, at times I've found it difficult with fibro fog and memory retention issues, nausea almost a constant companion., stiffness, exhaustion, lack of sleep, etc

At times I didn't even want to get out of bed in the mornings.

The most recent job which I started on January 9th was very intense. My employer took me on in full knowledge of my fibromyalgia.

However, they piled work on despite my saying that I couldn't cope.

Then towards the end of January I was also diagnosed with an eye condition which requires surgery and a 12 week non-working recovery period. Much of which has to be spent face down!

Suffice it to say, following minimal adjustments made and even more work, stress and pressure they put me on a Performance Improvement Plan for 4 weeks.

As of last week they terminated employment saying I'd failed the PIP.

I do feel that they were trying to encourage me to leave of my own volition but as I haven't it went down the PIP route so they could terminate employment right on the date of my final probation review. Technically then it can be said I didn't pass probation.

Now I'm left with no employment, feeling physically and emotionally exhausted.

Really don't know what to do.

My fibromyalgia has only been a verbal one. Given over the phone, by my GP, during Covid lockdown after blood tests had ruled everything else out.

I don't have anything in writing - what do I do?

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Gulfstream_Maggie
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16 Replies
Jan1964 profile image
Jan1964

Totally agree that you have nothing to loose applying for PIP, it is about your restrictions and not diagnosis or work. I work part time at home, but quality for PIP.Also go and see your GP. You don't mention prescription medication. Your GP can look at the fatigue, you may need iron/vitamins and pain relief, Something to help you get relaxed sleep etc. Maybe even physiotherapy or an OT review for aids to make life easier.

It's a phone call to start the process and the worse than can happen is they say no. Maybe once things are more settled, and your GP is treating you, you could work part time at home? Hugs xx

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to Jan1964

I don't mention prescription meds as pain relief wise I'm managing with paracetamol and Ibuprofen when required. I am prescribed a nasal spray and lansoperazole for Gerd and post nasal drip.

Also now taking vitamin B1 supplement and CBD capsules which seem to help.

I did have some physio while I still lived in the Midlands but nothing since moving to the Lancashire area.

All energies have gone into the eye issues.

I'm registered with a GP here but on the couple of occasions fibro has been mentioned she seems to completely miss it!

Sometimes feel like I'm rolling a boulder uphill!

Hi Gulfstream_Maggie, sorry to hear you are having a tough time. In order to claim a benefit like Personal Independence Payment you will need a confirmed diagnosis of Fibromyalgia. I would suggest you speak to your GP and ask for a referral to a Consultant and get a written diagnosis. The PIP forms ask for a lot of information and they ask for medical proof. Even now 7 years down the line with medical conditions such as Diabetic Neuropathy, Fibromyalgia, Stroke and reoccurring Diverticulitis they still ask me for 'proof' at review time despite my symptoms not improving. Citizen's advice is also a good place to ask about other benefits. I have worked all my life up until my stroke and am claiming New Style ESA and am in the maintenance group. It's not much but the only income I am entitled to sadly.x

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to

Thanks Croftgirl75, sending hugs your way.And in the words of a very wise fish called Dory ..... "just keep swimming"

😊

Emrue profile image
Emrue

hi Maggie - first off go back to your GP and ask to be referred to muscular skeletal team for assessment and ask doctor to try you on pregabalin to see if it helps your symptoms - The PIP folk ask for evidence of medication ( helps ) and any hospital letters - you can say you are waiting for referral - so those two things ticked off list - next you have to describe how the condition affects your daily tasks - yes you can say you have stiffness, brain fog ( cognitive difficulty) and body pain and stiffness , head aches - insomnia etc etc but they look only at how each symptom can affect your day to day tasks ie preparing meals, getting in and out of bed, dressing - undressing - taking medication - going to toilet - bathing - and the mobility side - it’s quite a form to fill in designed to catch you out- and the pip assessment likewise - I can help you with the PIP form if you are able to contact me - kind regards a fellow fibrio sufferer where every day is a challenge both in mind and body xxx

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to Emrue

Morning Emrue

Thankfully my partner has assumed majority of food prep and cooking. partly because he's good at it and partly as he knows I struggle.

He always accompanies me to appointments as we both know I have difficulties taking information in and retaining it.

My memory is so shot if I don't write it down it's gone. It can get me very muddled and anxious.

Sleep is a laugh. I can fall asleep at the drop of a hat while downstairs. I've even nodded off while trying to work - thank god the camera wasn't on. When it comes to bedtime the minute I get my head down it's a different ball game.

Can't drop off, laying awake for ages. Then when I do go to sleep I constantly wake up - even just to turn over!

And don't even get me going on balance or rather lack of. I've previously had vertigo but now it seems to completely elude me. In fact I had a fall on Monday just after getting out of the car. Next thing I know I was sprawled on the ground.

Now recovering with even more stiff joints and skinned elbow.

This condition is constantly surprising me.

Emrue profile image
Emrue in reply to Gulfstream_Maggie

Gosh you are a mirror image of me - drop me an email on donkey.donkey75@ googlemail.con and I can send you my answers to score the points as we both have the same difficulties

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to Emrue

Emrue I hope not, I wouldn't wish my toileting difficulties on anyone. Periodically, and embarrassingly, I often find it difficult to twist around to even wipe my nether regions.!!!!

Got to the point I was researching disability aids online.

Just been looking online at the Blue Badge criteria and currently as I don't claim anything I'm not able to get one.

As mobility can vary so wildly day-to-day I can't say I'm immobile!

It's hateful having a condition that's not only hidden but also is inconsistent in symptoms, severity and episodes

in reply to Gulfstream_Maggie

hi I totally relate to u I als have this balance and vertigo problems I fell in the house not long ago resulting in the tv and tv unit falling on top of me 😆 I still have the tv with the indent on there .I’ve also fallen on the last 3 stairs and endeded up banging my head on radiator at bottom of stairs now I am scared of using the stairs .sleep is a no no even being on meds to help sleep the list is endless but I still have to laugh at myself and carry on 😝

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to

OMG Roanne, I hope you didn't damage the stairs too much 🤣

Just pulling your leg a bit.

Are you ok?

I wasn't laughing on Monday when I fell.Skinned my left elbow/arm even though I was wearing long sleeves!

Got quite a large area on my arm now which is slow healing and really sore.

in reply to Gulfstream_Maggie

lol no stairs are fine just tvs a bit sore 😆 wishing u a speedy recovery hope I have success with your pip claim

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to

Hi Roanne So you know you're not on your own ....

Last week had a trip out with the OH for some fish & chips by the sea.

He had to drop me to go in the takeaway whilst he found a parking space in the car park.

I got out and he continued going round. The sun's very bright., my balance not good and combined with my darkened reactolite varifocals I went down like the proverbial sack of spuds!!

Not too much damage, badly grazed left elbow. Still sore and scabbed now!!!

in reply to Gulfstream_Maggie

Omg bless u were not doing to good are we 😆 wishing u speedy recovery

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to

We're a right pair!!!😵‍💫

Torti68 profile image
Torti68

So sorry to hear of your current situation. I claim PIP, ESA and Universal Credit. I have to provide fit notes from my GP. When you speak to your GP about medication ask them to sign you off as you will need a Fit Note from your GP to claim ESA. Sending big hugs xx

Kazzza1976 profile image
Kazzza1976

hi I’m so sorry to hear you are having a tough time. You have nothing to lose applying for pip but you do need a diagnosis of fibromyalgia.The pip forms ask for medical proof of this. I have applied for uc , new style Esa and pip. Well I have filled the form in for pip but I am waiting for an assessment over the phone. I was informed by uc that in 3 months time I have to go for a medical assessment to see if I am fit for work even thought my own g.p has said I am not. I don’t know much about the benefit system as like you I have worked full time for the last 3 and half years . I also feel sick having no employment but my employers are very ignorant and I had no support from them even know they where aware of my diagnosis. I hope you are ok , if ever you need a chat I’m here. x

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