Advice for appointment next week

[Leenie0811]

Evening all,

I hope you are well, I’m having a little anxiety about my appointment next week this post is probably going to be a long one so apologies in advance!

So a week today I am supposed to see my rheumatologist but I am having a lot of anxiety due to the lead up of the appointment - I know right now it’s strange times with COVID so the usual appointments haven’t been regular but I wanted to see if anyone has any advice for next week. The last appointment I had was in July and instead of seeing my rheumatologist I was met with the nurse specialist who told me my rheumatologist had moved hospitals so technically I wasn’t under anyone at the moment and she wanted to check how I was doing since being prescribed hydroxychloroqine - I told her how my symptoms had eased slightly however I was still having a lot of troubles I told her the following:

I have been experiencing fevers - not as much as before but still frequent, really bad headaches, swollen glands in the throat, mouth ulcers (round the mouth, lips, back of throat), stomach ulcers, joint pain (mainly but not exclusive to the hips), sun sensitivity, face rash and lots of fatigue. She told me that I would need stronger meds and gave me a leaflet on methotrexate but said she couldn’t prescribe it without me being under a rheumatologist. I also told her about issues with my hands, feet and nose they go cold/blue/numb and nothing I do seems to warm them up she said you have Raynaud’s but again I need you to see a rheumatologist before we start medicating for it. I was told at the end of the appointment I would be seen in two weeks time.

Approximately 4/6 weeks passed and I hadn’t got an appointment but I put this down to the current situation and backlog but then I got one for October I didn’t question it and was thankful I had an appointment however, I was admitted to hospital in the middle/end of September due to my symptoms and was admitted for 2 nights to control my pain and see if they could do anything to help (not my usual hospital) they said to call the rheumatology department and ask them to bring my appointment forward via my GP. My doctor agreed and wrote to the hospital they didn’t hear anything back and wrote again this time requesting if they could arrange any bloods or scans before the scheduled appointment if it can’t be brought forward. I checked on Monday with my doctors and they haven’t heard anything from rheumatology - they recommended calling the department myself and while the secretary was really friendly she said I can’t see any notes and depending on what I tell the specialist will determine what the next steps are...

this has heightened my anxiety so much and I feel like everything that was planned in July will be forgotten about and I’ll be going back to square one... am I being silly? Also does anyone have any advice for next week for how I can get the most out of the appointment? Oh I forgot to mention in the middle of all this I left multiple messages with the specialist nurse to find out what was happening but there was never a response! They’ve also changed the hospital I usually go to and it’s not the name of the specialist I was told I would see... feeling really overwhelmed at the moment and no idea what to do - hopefully someone can help me out.

Thank you if you got to the end of this post, it’s definitely a long one!

Leenie x

[Spanielmadlady]

Hi.ok first try not to panic or stress about the appointment otherwise you wont be able to process anything.write down everything ...symptoms, timeline ,any questions you want to ask.take pictures

Go to your appointment with an open mind someone different could a good thing.i cant comment on methotrexate as I take mycophenolate they are strong drugs and are often added to hydroxchloroquine.

Be confident tell them exactly how things are exactly how it affects you and the impact on your daily life .stand your ground,dont be fobbed off and you will be fine xxx

[Leenie0811 in reply to Spanielmadlady]

Thank you so much for your reply I’ve been trying not to let it get to me and spoke a lot with my mum about what’s going to happen unfortunately I’ll be going alone to the appointment but I’ve been writing things down and have my notes from my last appointment I usually write them in rough and copy them for the specialist.

I think because the nurse was so confident in her plan then it hasn’t happened it totally threw me off but it’s strange times at the moment, I just hope like you say a new person could mean good like getting a fresh perspective on everything... I’m going to write out how it all affects me this weekend so I can be properly prepared with all my notes just keeping my fingers crossed it all works out okay - I’m fed up of being in pain and struggling xxx

[Spanielmadlady in reply to Leenie0811]

I go to appointments on my own anyway as I'm on my own .pain and struggle is lupus im afraid I dont think any of us are completely free from from it.im prescribed pregabalin for pain and even though I'm stable and on a treatment plan I still struggle with fatigue etc .let's us know how you get on xxx

[strawberrylips]

Hi Leenie0811,

I completely understand your predicament, it's an awful time right now to get the care you need, every part of the NHS is feeling the pressure.

But reading your post you must be disappointed by your doctors and rheumatology nurse, that failed to follow up your calls.

All the advice I can offer you is right make a note of your communications with them and I wish you well, going forward.

The worst thing when we are struggling is not being heard.

A tip I always find useful is whenever you talk to an healthcare professional, always ask for their name (ie nurse) then if there is a problem you can refer to them personally..

Good luck with the appointment, hope you get answers..

Best wishes jx

[Leenie0811 in reply to strawberrylips]

Yeah it’s been so hard recently which is why I’ve been more like okay everyone will be going through this or something similar I wish everyone could get seen to but there’s only so many doctors isn’t there?

Thank you for your advice I’ve noted down when I’ve been in contact and can check my phone for other calls I’ve made, I’ve got a list of what’s been going on with my symptoms etc. just hope it’s enough to get things going again and good tip about the name thing I never thought of that at all!

Thanks again I will probably post next week how everything goes ☺️ Xx

[CecilyParsley]

Hi Leenie, you are not being silly at all. Your feelings are understandable given your symptoms, Covid and the lack of care and consistency that you have experienced as a result. My advice would be to bullet point your journey to where you are as there is absolutely no reliability on the Rheumatologist having had read through all your notes. If you have any photographic evidence or symptom diaries take them along with a copy of your prescription as it saves time trying to remember everything. Good luck with it, the positive is that you are being seen and hopefully treated so that you can start to feel better xx

[Leenie0811 in reply to CecilyParsley]

Thank you so much for the tips I’ve been working on my notes to take with me I’m going to write them up neatly so they can keep a copy of everything I just hope the wait will be worth it and they put some things in place as all the stuff going on really gets me down and I want to get some kind of life back xx

[RosieA]

What a muddle and such a stressful time you have had trying to get to this point. But, with determination you are getting there. It seems to me that we need our fair share of grit with these autoimmune diseases.

I ususally go to appointments with my husband and the first time alone I felt quite vulnerable so I arranged for him to be on speaker phone. Worked a treat.

If your mum or someone usually goes with you then ask her to be around and agree with the consultant that you put her on speaker phone / Facetime during the appointment - stand your ground on this point. She can then listen, write notes and you can have a sensible discussion afterwards. You could also make a list of all your symptoms, concerns and questions for yourself and mum and then she could then point out any you have missed. Ensure at the end of the consultation that either you or the consultant summarizes the main points - "My understanding of what we have discussed / agreed is/.... because...". Always ask them to explain their thinking / rationale for treatment etc.

I have been on methotrexate - initially because all my symptoms were of seronegative arthritis. I injected it once a week (very easy and painless) but sadly it didn't work for me. I am now on 300mg HYD and steroids - yipee, they are really helping.

Keep that determination going. You are naturally anxious but remember that everyone will be doing their best to get you on the right path medically. Just knowing that someone that cares about you is on the other end of the phone, listening may help. Do let us know how it all goes if you feel able. xx

[Leenie0811 in reply to RosieA]

I used to go to appointments with my partner however he passed away earlier this year very unexpectedly we used to discuss everything in detail before my appointments and do the notes together so it’s very strange times now going alone but I love the idea of having someone on the phone whilst I’m in my appointment I think that would be a good help as I know my mum is unable to come with me I can’t go and get her and go to the hospital as it’s in the middle of work but having her on the phone would be a good help.

Yeah I just hope everything that was mentioned in July will be seen to when I go on Wednesday I’ve been doing my notes so they can have a copy of them and I’ll keep my scribbles for my copy. I’m glad you managed to find meds that helped you I really hope they can get something sorted for me when I go I just want to be able to get through the days properly without having to take time out or feel completely wiped out I work and study so it has a massive impact on how well I can do things and it really gets me down xx

[RosieA in reply to Leenie0811]

I am so terribly sorry for your sudden loss and hope that all goes well for you. Yes, an extra pair of ears always help, especially, I find, when I am suffering from brain fog and my emotional barometer goes on overdrive. Fingers crossed and let us know how it goes if you feel able. xx

[Leenie0811 in reply to RosieA]

Thank you lovely and yeah I will do another update when I have been tomorrow feeling nervous but got notes to take with me so praying they listen and do what they said back in July otherwise I don’t know what I’m going to do xx

[Leenie0811]

Oh I know I feel like we have been made to wait and nobody thinks of the mental impact on you as well as all the symptoms we experience daily. Yeah the nurse said I would see the main consultant within weeks so it would be sorted and my usual GP wrote to them after I was in hospital asking for me to be seen sooner which didn’t happen then two weeks after another doctor wrote to them asking if anything could be done prior - she was lovely on the phone to me she said the proper care needs to be given and not relying on opiates at such a young age. Unfortunately nobody has heard anything and the secretary for the department said she couldn’t see any requests on my notes for things to be done prior when I called the hospital.

All the not knowing and waiting has taken a massive toll on me mentally which then affects my conditions I just have to hope they sort things on Wednesday and be as prepared as I can be, thank you so much for replying to my post it’s good to know we aren’t alone in all this xx

[Leenie0811]

The amount of times I get you don’t look sick or if you’re tired get more sleep... if I had a pound for every time I’d be a very wealthy lady! It’s so annoying isn’t it?

I know stress and my anxiety can amplify my symptoms I do try and journal to get those things out of my head or talk to friends/family - doing this prep work has really helped. I have some photos of symptoms I always forget when they’re happening as I usually want to sleep!

I have a feeling that it could be a difficult time tomorrow making decisions on meds if they offer what they did in July, I understand you can’t plan children when taking methotrexate but I am on the hormonal injection to control my endometriosis symptoms so babies are out of the question... would also need a partner for this and that’s really not on the cards right now but it is a question I have for what if that time comes...

thank you very much for your advice I’m feeling slightly less anxious about tomorrow with everyone’s help! Xx