Hope everyone’s doing good!

[Charlottewileyy]

I thought I’d come on here to do a little update, I have come to the decision of going private due to recent events with my GP surgery. I am seeing a chronic pain specialist this weekend who is going to do a review along side rheumatology so hopefully I might get some answers but I am overjoyed that after speaking with the team on a phone call before my face to face appointment they have agreed to try treatment for my chronic pain after being told if I go through the nhs I’d have to wait until I’m at least 30 to be considered!

So hopefully I will have it under control and be able to work and enjoy life again😊

How is everyone doing? How are we finding lockdown currently?

[Fruitandnutcase]

I’m glad you are getting somewhere. You sound as if you are young and yes, you do need to be able to get to work and enjoy life, we all do but I really feel for young people with this awful disease.

I can understand why you are going private. I’m doing the same with a physiotherapist, there is no way it will happen on the NHS and I just can’t live with the pain on a daily basis. It’s very difficult when - even if your problem is not life threatening - you discover you are someone who would be being treated were it not for covid

So good luck with your consultation.

[Charlottewileyy in reply to Fruitandnutcase]

I’m 19 so it’s been abit difficult we’re still not 100% sure wether it will be rheumatoid arthritis but I’ve had chronic pain since 2013 so since I was 12 and I have been told from the start that I’m too young for treatment other than physio which I’ve done about 6/7 times and we’ve never found any difference but I still do my exercises everyday in the hope aha, yes it definitely got the the point I realised I needed to go private since I’ve been told they are also stopping all my prescribed pain medications while offering no other help which I couldn’t quite believe but hopefully we will get somewhere,

Thank you so much, how are you finding it with the private physio?

[Fruitandnutcase in reply to Charlottewileyy]

Hi, the private physio is good - the best thing about it is that if you pay for it you get it right away. I decided that as I’m not doing an art class and a French class I used to do then I can use that money for physio.

You are way to young for all this rheumatic disease palaver! Physio is good and you're doing really well keeping at it with the exercises. I’m sure they do help - you could feel worse if you weren’t doing them. I can’t believe they are going to stop your painkillers. Perhaps they are worried that you will become addicted - who knows what the reasoning is behind that decision.

Before you go to see your consultant it would be worth sitting down and thinking about how you feel then write it all down. Start at the beginning, don’t write a massive essay - just bullet points.

* When did your symptoms start?

* what is your pain like?

*where do you feel pain?

* how long does it last?

*When does it happen - morning, daytime or evening, during t he night etc?

*What helps it / what makes it worse?

* does it affect what you want to do? If so how?

* any medicines / creams / spray ons you use to try and help

All that sort of thing - I’m sure you will probably be able to think of more points - it means that when your doctor asks you about yourself you have all the answers to hand and you can be quite definite about it all which will not only help him but it will mean you get more out of your appointment because you aren’t needing to think about everything he asks you.

I used to be the classic when asked how I was feeling I’d say alright! Stupid because I wasn’t otherwise what was I doing there. Now I work it all out in advance.

If you print it all out you could even give him a sheet to look at as you are talking. It might also be helpful to take someone with you to take notes and just for support really.

Keep in touch and let us know how it goes. Good luck.

[Charlottewileyy in reply to Fruitandnutcase]

That’s good, that is a plus of private that it’s so quick getting in aha and thank you so much for that it’s really helped I’ve got everything written up and yeah I’m trying to get them to allow me to bring my mum with me to help so hopefully she can but if not I’m going to call and have her on speaker x

[Fruitandnutcase in reply to Charlottewileyy]

Oh I’d forgotten about having to attend on your own because of covid! Another downside to it. Very good idea to put her on speakerphone for your consultation. Mind you if you are going private you might be ok with it.

Hope it all goes well for you. x

[KittyJ]

Some good advice from fruitandnutcase, it’s surprising how much you can miss out when in an appointment, I still take notes in with me years later. You can ask for your notes to be added to your records too. Good luck 😊

[Charlottewileyy in reply to KittyJ]

Definitely it’s been so helpful, thank you so much x

[Durrell]

Well done wildflower I think that sounds very positive, I’m sure that will have a really good impact on your mental health which will have a knock effect of your physical well being also. I think that little bit of extra help for what might seem costly at present, is worth every penny once your on the mend & feeling loads better, you won’t question it at all..

I wish you well please keep us posted how it goes..

[Charlottewileyy in reply to Durrell]

Yeah I’m hoping so as I won’t lie I have been feeling down for a while but I’m really hopeful this might be the start of a big change so fingers crossed!

[Durrell in reply to Charlottewileyy]

& understandably your way to young to be burdened with this disease, it’s so hard to comprehend. I’m just starting to see a functional therapist to get the help I feel I need with a fully comprehensive diet & well-being approach. I’m very good with paleo but it’s more the supplements & possible testing that can help. This leaky gut syndrome & healing within, for me is really worth the effort to see if I can benefit, as so many have..

chin up my lovely & follow your path, nothing ventured nothing gained. 🍀