Is it rude to wear a top like this to a consultation with pain specialist

[duckduckmouse]

www.thefmlystore.com/collections/women/products/the-wonder-women-raglan-scoop-sweatshirt

I'm really fed up of the service I'm getting and my condition. I'm really desperate to have another child and my medication which I detest isn't compatible with pregnancy.

I want the pain specialist to make a permanent solution or a semi permanent solution by a physical intervention such as denervation or a nerve block because I cannot continue to have a life based on pain and medication.

I take maximum dose of gabapentin and del truly abandoned by the team.

I want to send a strong message which is that I want to have no medication in my life so that I can have another child.

What do you think?

@duckduckmouse Oh wow! "I attached two photos of my notes..."

I am SO sorry! I can't see any photos above my comment, so I thought the post where you'd mentioned them was the whole thing! Apologies!

Oh yes and I did see that you're not only bringing DH along but also a private nurse, and that is a WONDERFUL idea! I never would have thought of that, and it's brilliant. I should have mentioned that in my first post, but I felt it was already too long.

I do wish you the best of luck, @OP. I hope they get this sorted for you. I can't imagine. I get these nasty headaches (very occasionally) where if I change the height or altitude or angle of my head even slightly, it's blinding crippling pain (which is why I've lovingly named them "altitude headaches"), and the only thing in the entire world that will cure them is several hours of sleep. I absolutely cannot even imagine having to deal with that any more often than I do - much less constantly and chronically! - and surely my little headaches wouldn't even register on your pain scale. :(

Just be as frank and honest as you can manage with your Dr. Try your best not to worry at all about anyone else's feelings or being polite or anything like that - just tell him every single thing that comes to mind, even if it might not be relevant. Tell them that you feel like you're being brushed off, tell them that you're not satisfied... everything. You can't go on like this, and it's the Dr's bloody job to sort it out, or if he cannot do that, show you to somebody who can!!

I'm sorry you're dealing with this, and I really pray they finally help you this time. :(

@JWrecks
Thank you so much for taking the time to write a lengthy response to me. It feels much more wholesome when people take the time to write something with plenty of information in it.

I'm sorry to hear about your headaches (are they migraines?) any pain drastically impacts people's ability to relax and enjoy themselves. It doesn't matter where the pain is or what medication you take, if you are suffering then that is all that matters.
Have you tried Bucastem or Propanalol for the headaches? These can be really valuable tools. Talk to your GP if you haven't already.

I think I've got all my ducks lined up for the meeting and I'm asking my nurse to manage the meeting for us in order to get the best possible result out of the tiny time frame we are allocated by the NHS.

That's why I was asking about the jumper, just to add a bit of humour into what is a very hard situation for us to manage and live with. I am very focused on having another baby and I don't feel I would cope well if I didn't at least try. I am an amazing mom. I don't want to sound arrogant. But I really treasure and adore my son. He is my world. He is very sociable and I want him to have the pleasure of a sibling. People may put me on a stake for saying these things but it is true. I adore my son and I want another baby. I wanted three children but I think one more is probably our limit. I don't want to risk my health. It would make my whole family suffer.

I will come back and update next week on the outcome. If they offer no intervention I need to know why and I want to begin to wean off of the gabapentin in order to prepare to add another beautiful person to our clann.

Night night x

I know it's hard to hear, but ShastaBeast has given you good advice. Please try not to develop a fixed belief that there is a single treatment that will cure your pain. I have seen so many patients go through that thought process, only to have their hopes dashed. The reality is that - unfortunately - for most people with chronic pain, it's a question of supporting them to manage the pain, not curing it.

I am sorry you are in such pain. It does sound as if your relationship with this hospital has broken down. Would going somewhere else be an option? Your anger is entirely understandable, but it's incredibly difficult to have an effective therapeutic relationship between doctor and patient with this level of anger and (understandable) mistrust, especially with pain management. You might benefit from a fresh start at a different hospital.

@SelmaAndJubjub it's not an option.

There are two hospitals within a 30 mile or so radius, both of which are the same trust and both of which is where the same pain team work.

I have a fine relationship with them but I am very very upset it's taken so much effort on my part to get help. I've spent a lot of money on private health and the majority of it hasn't worked. This was because I initially thought I had kidney issues after the nephrostomy.

I do not care what the procedure is as long as it gives me enough comfort to not take medicine in order to have a pregnancy. There are many options for them.

The NHS is a fucking joke.

I was put on a combination of codeine and diazepam for a year for intense pain. Kept fobbinf me off. I assume too expensive to send me for xrays and specialist appointments.

It was only when i moved abroad and used their health service that I discovered I had a really serious fucking problem with my spine. They sent me directly for xrays.

@splendidisolation that is shit.

They do often over look things because they are so over worked and under paid. I feel that they have over looked a lot with me. I am also grateful for them in equal measures. I hope you get the right care you need.

You sound a bit airy fairy. You don't get anywhere making movie style speeches in real life. Just say what you mean, you want to be off the medication so you can conceive a healthy baby. Be firm, be precise and be factual. That is what professionals respond to.

I've had amitriptyline and gabapentin together, and another med as well! OP, I understand that you want another baby but your views on your treatment and medication do not sound quite right. I hope you will go in to your appointment a little more open-minded than just thinking that if they don't enable you to have another pregnancy it's a failure. They are trying to do their best for you.

Tbh I agree with Cotswold it might just not be possible and I think you should give that a bit of thought before the appt.

You need to dial back the drama, the paranoia and the attitude. And use your words, not jumpers.

Are you the unclaimed CB/mat pay poster?

They probably wont even read the top.

If you are straight forward with them hopefully they will take you seriously. But bear in mind hcp are not magic and sometimes the options you want wont work for your pain condition. I'm on pregabilin top dose, amitryptaline, cocodamol and naproxen and have a disability that means no other options work and i will be on these meds for life. I desperately want more children but it's not an option because of this. It's frustrating and heartbreaking but sometimes we just have to come to terms. Hope you have more options available.

A strong message would be to use words.
A jumper won't do it.

Can't you be a big girl and actually talk to your doctor?

I posted the wrong link

Anyway points taken, and yes I was to the lady who asked if I posted asking about other things to do with child benefit and maternity pay. FYI I looked in my maternity notes and I can clearly see the list that has been discussed with me with the midwife in hospital and child benefit wasn't on there.

And why would it be on medical notes?

OP, your top may bring a wry smile from the women you encounter, but it won’t help you get your message across. However, if it gives you courage, buy it and wear it.

The combination of pain and medication is probably not helping your ability to deal with this calmly and rationally - that’s not a criticism, just an observation. I know I’d be the same. I think some posters have been a bit harsh on you.

I think you’re wise to take back up to your appointment. I can’t comment on the private nurse idea, but having an advocate who can speak on your behalf and listen for you is really important. Whoever you take needs to be a good communicator, though, and someone you trust.

Good luck OP 💐

I'm delighted!!

Booked in to have Botox in my back to paralyse the muscles and hopefully alleviate pain.

Coming off gaba tomorrow and will titrate down for about 48 days.

I agree, OP, that the consultant wouldn't get any message from the top at all. It's a nice top though and it sounds like you really deserve to wear it!
Your situation sounds absolutely horrible and I hope that you get it sorted, or at least on its way to being sorted. Good luck.

Oh, sorry, OP, I somehow missed the last page and your update. Glad it went well!

It doesn't help I posted the link for another top and not the one that said mother. I've already got their sweatshirt but didn't wear it today. Went to the meeting and no word of a lie the consultant had his jumper on inside out

Haha, brilliant! I suppose if he's the sort of man who doesn't notice his top is inside out, then he definitely wouldn't have noticed the subtle messaging on yours

Yay OP ! Thanks for the update and hope it works x