Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

I'm glad your kidney pain has subsided somewhat though. Do you know anybody in the building who could help you out?

It’s fine I can ask for emergencies but can’t just ask neighbours for things you would rather than need. Don’t think going on chocolate bar mission is emergency for most people!

Kidney on off annoying just when have 12hours not hurting and think that’s finally gone. Back it comes , had blood tests yesterday so guess early next week see any damage. Can’t do much before then just have put up with them being “sore”

@Akire, if unlike me, you have self control, letterbox chocolate and sweets can be found on Amazon.
I hope your blood tests are okay, I’ve only had a kidney infection once and I don’t recall it with affection!

@Hydrate me too 🙂

I've had a bit of a bumpy couple of days unfortunately. My Head has been feeling fuzzy and I've been feeling tired again. I'm thinking about ringing the doctors and speaking to the rhumy doctor again. He told me it's hard to diagnose with my cerebral palsy, but I'm going to still pursue it. 🤞🏻

Good luck with your blood tests, @Akire ❤️

Morning all. How is everyone?

Gentle hugs all round and fingers crossed all for a quiet and comfortable weekend. @Gilead hope you're still on course for coming home.

Mornings getting lighter seems to be a positive. Slightly easier to get out of bed (hate getting up in dark - so depressing)

I've submitted my paperwork to the Tribunal. Took all morning. Just had physio rehab and got to go and collect DD in half an hour. Just want to go to bed. At least we have easy evening tonight. Watching Turning Red which has just come out on Disney +

@RainbowZebraWarrior fingers crossed for the tribunal. I cant see how they can't give you what you deserve.

Thanks @HerRoyalHappiness I've called them out on their complete fabrication that I went in for a medical and was examined and found to have full strength and ability to walk. That was totally news to me. So if nowt else, I hope they get their arses kicked for that. Two other similar lies have been called out. I've given further info, and I've also quoted what @Akire said about if the ability to drive means I'm fine, then why do the Mobility and blue badge schemes exist.
Up yours, DWP!

just got my pip renewals fille din, just the bit with my meds and medical conditions ot fill in then it casn be sent in

i9 hoep you win at tribunal @RainbowZebraWarrior they tell such lies

Well done on appeal I’m sure you win. Funny just watched Daniel Blake again it’s so accurate even down to the music on the phone.

Lift is fixed so I have chocolate. Kidneys still being annoying but it’s not 2 week till Wednesday and she said give it few weeks for them to “feel better”. Knowing me blood test will be fine I wait 6m for scan and it add to chronic pain list for no wording reason.

Also chest pain back last 3 days. Pretty sure is fibro but havnt started that with Gp yet. Can’t be having heart attack 24/7 for one week out of 3. But constant indigestion pain gets you down.

For wording reading sodding!

Thanks One Night and Akire I Daniel Blake was filmed in my City. Pleased you have choc, Akire. Re: chest pain, do you have a pulse oximeter? Can you record your heart rate? I have general Tachycardia, but also been diagnosed with Postural Tachycardia. I know you use a wheelchair so are probably more likely to be sitting / lying so may not be PoTS. But I also got worse with palpitations as I neared Peri Menopause. Also, I get Adrenaline surges and have high BP (medicated) As you say, problem with deciding which symptoms to 'bother' GP with next.

Hugs all round

Thanks @RainbowZebraWarrior changed my meds so made palpitations less. The chest pain I feel fine no heart rate or cold or out breath hence thinking more Fibro link. I do get hike in heart rate doing bear mim raising self to sitting position say or just sitting up and reaching across the bed but had put that down to being unfit.

Bloody kidneys hurting again flank pain this time. Wish I knew what causing it living with oh my kidneys feel like going explode pain is so annoying!

Hope somebody has some nice plans today or bit of self care. Sun is out here always make a difference.

Crikey @Akire your kidney pain is grim, it’s the worst when you have a good day, think you’re on the mend and then bang! Square one.
💐

@RainbowZebraWarrior, good luck with appeal. I’ve got my phone interview next week!

Hi @Gilead good to see you hope you feel better. Yes it’s the up and downs get you every time. Least I still have few weeks Coedine left from generous Doctor.

I’ve decided try take out a Disability Discrimination claim can’t name company but sick of lack access when easy solutions exist and it’s lack of care or plain ignorance still holds wheelchair users back. I used think campaigners were a street apart but reality is they just had more years under their belts. First you moan and moan then you think no more! The law exists in my favour it’s forcing them to comply. Feeling quite excited about it !

@Gilead is this for your first claim?

No, it’s my renewal. I’ve been doing them for other people as a volunteer for years. I hate those bastards and anything I can do to stick it to them I will. I’ve seen some shi in my time but the tricks they pull these days are unbelievable!

Well least you are prepared then!

@Akire Gosh, your kidney pain sounds like a nightmare. Hope you get to the bottom of it all eventually x

@Gilead Hope the renewal goes ok. No matter how informed and prepared you are, it's still a Pain In The Arse. Are you out of hospital?

@ICrunchCrispsNotNumbers I'm so sorry, I didn't realise you had Cerebral Palsy. Hope you are ok. What other diagnosis are you seeking? I can imagine it is hard to pick apart different symptoms. We all have that issue here, I think. But just wanted to send hugs and hope you get some clarification from your Rheumy x

No still here, much discussion on what type of arthritis ( I keep saying it’s PsA) and talk about the frequency of carers. But hopefully between now and Wednesday.

I’m prepared for the phone conversation.
I’m currently dealing with someone who received a letter saying their doctor is not capable of making a judgment as to whether or not someone is fit to work, therefore client is not to send in anymore certificates as dwp will no longer accept them and he is to attend work based interviews. I’m sorry but actually that’s exactly what a Doctor does and the government’s own website dictates that fit notes are not to be ignored.
Absolute Bastards.

Aye, you know your body best @Gilead. Hope all is sorted soon.

Quite chuffed here as DDs referral to Institute of Genetics has come through within 2 weeks. So this is for her official diagnosis of EDS, plus referral on to Gastro etc. Shame it didn't happen a year ago, but her then Paediatrician 'didn't believe Mum had EDS'

I love it how DWP think your own doctor can’t say if fit for work but a “medical professional” of dubious qualification who’s never heard of your condition can. I’m dreading my next lot but wouldn’t be for 3y I think. Hopefully more with covid back load.

Great news about genetic referral should be standard these days to get right answer asap.

Had reply for shop chain they are “not aware that it is a step” so all seems hunky-dory in their world! Not even a sorry or recognition that I still can’t get in. Or even direction to their next branch. The matter will not be left but see how much fight I have given we fight for everything.