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.

Yes exactly. I have been seen by my Long Covid clinic but it was for emotional/wellbeing techniques that I had already read about on the internet I would rather have the LC diagnosis but I am trying to apply for a permanent reduction in hours due to my health. LC is such a new condition that they may turn it down on that basis. Thanks for all the support it has been really helpful talking to people in similar situations.

I don’t think work get decide what condition they are prepared cut hours for. If they can accommodate a part timer then doesn’t really matter why especially if have medical fit note or Ocupational health recommendations.

We are all in same boat here so we know what it is like. Hang in there

@Justalittlebitfurther In regard to you being allergic to codeine and also symptoms of depression, a lot of modern SSRIs could be the answer to both.

Can you ring and ask to see another GP. Or have a look at your GP website (mine shows all the GPs and their areas of specific interest e.g Mental health, Musculoskeletal etc)

Also, if they are agreeing that your Amitriptyline needs to be upped, then they are admitting they know your symptoms are bad. So should be sorting daytime meds out too.

@Justalittlebitfurther I would see another GP and try to get a firmer answer. I'm really sorry to hear about your troubles with the GP. I've been though similar recently so I'm sending you love and sympathy ❤️

@Justalittlebitfurther I agree with @RainbowZebraWarrior. Please ask them to sort daytime medication for you. They will be able to prescribe some without Codeine in them ❤️

Dealing with the frustration of GPs and other medical professionals makes me angry. I get tired, I get worm down, but I will not be beaten. I possibly bore them into submission, I don't know. It's taken a long time for me to be heard, and now I'm trying to advocate for myself and DD at the same time for physical and mental health issues. I can't get it wrong. I just can't. And so I shout louder. (In the most quiet and eloquent way) I also do my research. I go armed with NICE guidelines and any latest information I can get my hands on. Makes it difficult for them to argue.

Thank you for all the encouragement and support. My plan is to ring and make another appointment as I have other issues which are yet to be investigated. I’ve started a complaint with the practice manager about why I haven’t been able to get a face to face appointment either. We’ll see how that goes for starters.

Sorry, I get angry on others behalf. On all our behalf

I've been asked by my OT to be a patient advocate in the Rheumatology dept. I've said once I've got myself in best place I will do a couple afternoons a month.

or all

@Justalittlebitfurther

Thank you for all the encouragement and support. My plan is to ring and make another appointment as I have other issues which are yet to be investigated. I’ve started a complaint with the practice manager about why I haven’t been able to get a face to face appointment either. We’ll see how that goes for starters.

@Justalittlebitfurther ❤️

@RainbowZebraWarrior I know what you are saying about it being exhausting. I have previously advocated for my DH but that was easier than this I’m guessing because I wasn’t the patient! I will keep going but it everything just seems to take so long.

You sound like you’d be a brilliant advocate but don’t put it before your own health and well-being

You would be great @RainbowZebraWarrior you are so supportive here. Also it’s so much harder to shout for others not yourself. I’m much better than I was but still long way to go. It shouldn’t be as hard as it is though it should be given not be tweaked out with persistence.

*I mean much harder about for yourself not others.

@Justalittlebitfurther

Thank you for all the encouragement and support. My plan is to ring and make another appointment as I have other issues which are yet to be investigated. I’ve started a complaint with the practice manager about why I haven’t been able to get a face to face appointment either. We’ll see how that goes for starters.

I'm so sorry your appointment wasn't very useful. That is crap. Not liking the phrase "pursue a diagnosis of CFS." I'm glad you got stronger amytriptiline. I feel my gp suggesting a diagnosis of fibro is just because she needs to box me off somewhere and thinks that is the closest to what I am going through. Not looking fwd to my face ro face wirh gp on Thursday. I just hope I don't cry but maybe she needs to see that?

Agree with others saying ask to see someone else on the practice.
For you

And also agree it is exhausting

@RainbowZebraWarrior I volunteer on the welfare side of things, seems I’m a bit of a whizz at filling in PiP forms for people with EDS and Autism. It’s worth doing but trust me, you will still be angry. I have seen the DWP pull some stunts!

@Gilead I can imagine the kind of stunts.
I'm sure this government would prefer it if all the sick and disabled people were locked away in institutions like in ye olde times.

Oh god no, I'm not getting involved with PIP. I'd kill someone. It's sitting with the patients following Rheumy consultants diagnosis of EDS / Fibro / Other similar conditions and helping them come to terms with it. Apparently a lot of folk don't understand what they have been diagnosed with and are left to wander off confused and upset. The dept knows me well as the patient who goes "Yup, thought so" every time they add a diagnosis to my records. And there are packs that the OTs give out about PIP. It advises going to CAB or the usual helpful websites.

Morning everyone by the way. Hope you all slept well.

I slept ok thanks though woke up 715 and thought can’t go back sleep as don’t know what time nurse will ring. But then realised it’s still Sunday. Awake now though so back in bed with coffee and MN.

Benefits and work charity/website have training online programs for PIP quite fancy doing one. It’s less £20 for a disabled person much higher for professionals. I find it all interesting. I could sent someone from CAB once she didn’t have a clue, she was helpful as in I couldn’t hand write much at the time but that was all.

Morning all. Didn’t sleep too badly but did take an extra amitriptyline so am a bit groggy!
Rainbow, don’t blame you about PiP ! I have a letter here that in a consulted way is telling my client that although they are being given a certificate by their doctor, the doctor doesn’t understand the functioning requirement for dwp so stop sending the certificates in because you can work. This is a person in the early stages of dementia! Fucking disgusting!
@Akire Benefits and work are great, so helpful.

Convoluted! Bloody autocorrect!

@Gilead that's horrendous!

That's just sickening. People should be sacked for shit like that. Like that documentary that was on about DWP a couple of months ago. So many people have taken their lives because of their disgraceful decisions.