at last the appointment date: Hi all So pleased to get... - NRAS

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at last the appointment date

7 Replies

Hi all

So pleased to get a letter this morning and they have moved my rheumy appointment forward to this wednesday thank goodness.

I have been off metx from mid July with no replacement dmard - one steroid injection that set off an infection and painkillers that have done little. I took Mand's advice went and sought help from GP - the stiff upper lip wobbled and i betrayed my stoic disposition (not) and showed my exasperation and weariness (getting hard time from line manager) so could not take off work and wallow a bit.

Anyway, my GP got on the phone to the rheumy's secretary and got my appointment brought forward 6 weeks, thus the letter this morning. Such a good GP.

But i see i am not alone, quite a few of you seem to be suffering similarily whether you be on medication or not.

I also have that horrible throat thing again - had it just before my diagnosis - something stuck in my throat feeling and like the beginnings of a sore throat. Then i go hoarse - apparently it has to do with the muscle in my throat but it is really unnerving.

Roll on wednesday, hope they throw in a steroid as well.

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7 Replies
cathie profile image
cathie

So glad you've a good gp it makes a big difference

X c

sylvi profile image
sylvi

mads, i really hope you get some answers on wednesday, i had to pester everyone at the hospital all the time until someone must have moaned to my ra nurse, not sure how it came about but my ra nurse rang me. As it happened i was in bed in chronic pain when she rang. I was breaking my heart out to her over the phone. Its thanks to her as she was listening to me, that i was sent back to see a doc. my ra doc was away so i saw another one.. He was brilliant, he told me i'd got fibro as well as the ra. My conclusion to what your saying is sometimes you just have to keep on at them, and put it on a bit. I didn't have to do this in this instance, but sometimes it has to be done just to get someone to listen to you.

Hope it all goes well for you on wednesday.

Love sylvia. xx

Thank you - i know Syvlia - i am really worried that i will be immobile again if i don't get something quickly. I think because i am still working it leads people to think that i couldn't be in that much pain .....

It gets to the point though that people have heard it all before - i don't know how many times i sat down last week to blog and realised that every time i went to write it was just a repeat of what i had said the day before, week before, i get so tired of thinking about it but it is present and therefore i have little new to say.

Sylie why are you not allowed to drive?

Hope you get sorted out on wednesday Mads - I've found that going to a rheumy appt without any benefit from pain killers gives them a truer picture of what's really going on.

When I was first diagnosed I did a lot of 'I'm fine' at my appts but there is no benefit to suffering in silence! I've also learnt not to put my 'game face' on - foundation, blusher, eye liner etc - and allow my rheumy team to see me as I really am if I'm struggling. Now if I go to an appt looking 'well' it's because that's how I'm feeling - 'well' being relative in RA:-)

It's ok to come on here and say the same things - it's how you're really feeling and we all know that place. You will always find supportive friendliness on this site, that's the benefit of it:-}

I had 3 months with no DMARD after neutrapaenia whilst my neutraphils recovered and the Salazopyrin got out of my system - I got through it with kenalog injections.

Take good care of yourself,

Cece x

Hi mads, I do hope you get sorted on Wednesday, and glad you decided to go to GP, got the appointment brought forward so that's good.

Pester pester pester!!!

It's sometimes the only way to get people to listen, I know sometimes we feel a nuisance in doing this but believe me in the end someone notices your pain and suffering and helps, eventually.

Generally a combination of a good GP/nurse and consultant can get you sorted.

It's an awful time waiting for meds to work and when they don't or we have to come off them for some reason it's a bit like going back to square one.It's all a waiting game, and not a very nice one.

Don't worry if you come on here to Blogg and you think we've heard it all before you need to let it all out, the way your feeling etc, does you no good keeping it bottled up waiting for things to improve and waiting for those close to you to understand. It can only make you feel better talking, so there's no better place that on here. I still feel the same at times that people don't want to listen and fed up of listening, but other fellow suffers of RA understand perfectly and will never judge you.

Make your point on Wed and tell them exactly how your feeling, physically and mentally! They are the ones to help, and the appointments are few and far between so you need to make the most of them. Would your hubby go with you, would be good if he could or someone else close to you who knows what your gong through.

Hope it goes well mads and keep us posted.

Take care

mand xx

cherry2 profile image
cherry2

Hi, glad you have an appointment soon, its so exhausting to have to fight to get the help and treatment you need isn't it. Make sure you take someone with you and write down all your questions so you make full use of your time there. Lets hope you get a result! Let us know what they suggest as there is such a choice of ways forward that there is bound to be one of us who has been along the same path. Don't be afraid to say it the way it is- the one time I really did the consultant kept saying- yes so many of my patients say that, it kind of made me feel better and proved that i wasn't going mad or being a wimp! Take care, x

good luck for tomorrow xx.take a note pad.. for you questions and to write their answers xx

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