Asking for suggestions re RA

[Adorable1]

Hi

I’m never sure when to ask the nurses for help/support with my RA it is with that in mind I write this post.

I realise some things I have to manage and cope with

First started with symptoms around February this year stiffness etc. Went to GP finally in may as the symptoms didn’t subside. Waited quite a while for an appointment all the time mornings were difficult with the symptoms and feeling unwell , which slowly subsides by middle of the day.

I saw rheumatology in August diagnosed with RA and possible Ostio A.my CCP (bloods) were 195. The X-rays showed some erosion in my hands,

Finally In September (this month)I got hydroxychloriqune 200m began to take just over 2 weeks ago. Realise they take a while to kick in 3-6 months maybe, nurse said I would probably need something stronger in future

im struggling in mornings my hands still very stiff my concern is what damage is being done while I wait l.my next appointment is mid November with nurse,which the hospital say is the earliest they can give me.i have to kinda roll over in bed to get up to stop my joints hurting.

My concern is when should I alert them when should I call, I’m new to this and I don’t know what is normal in the process and what I should tell them about. The stiffness and awful feelings have not subsided since i started with it all,

Feeling down.i don’t like to bother unnecessarily as I have anxiety and worry about calling when it’s unnecessary

Any thoughts guidance appreciated

[RAGuy]

Hi, me again!

I completely understand anxiety, I have had episodes of anxiety attacks all my life periodically. Unfortunately, it can stop you doing the right thing.

If you feel the need to contact them, do it. If you think you are being a nuisance but are worried, do it. You are important, controlling your RA is important. It is vital to prevent RA doing you damage, so do it. Nobody should suffer long term pain if possible, so do it.

I guess you are getting my drift now. But most of all, as the ad says, do it because you are worth it!!

It is hard with the fatigue, pain etc but you can do it. Keep going, we are with you.

[Adorable1 in reply to RAGuy]

Thanks so much RAGuy ..it helps to feel validated.

By the way I used the hot water on hands and it was definitly soothing and helped so thank you for that too!

Feel so bloody down at the moment I hate going on about illness but as it’s new to me I guess I’m also finding out things , ways to help myself, I’ve always been rather active. My new garden is lovely and I want to get on with making it even lovelier 😊

I’ve decided to give the nurses a call after the weekend, not sure they are there weekends anyway. Will call and explain my concerns around damage that may be happening while I’m waiting for stronger meds or to be seen ..

Thanks again.

Hopefully soon ish I will be feeling a lot better 😊

Take care and anxiety is the Pitt’s too sorry you know what it’s like

[RAGuy in reply to Adorable1]

You are very welcome!

I am a volunteer for NRAS. It helps me to support anyone in any way I can, so that is a win-win! Your journey will be different from mine, but it will overlap many times with mine and many others. That is what is great about this community.

I will always try to distil advice into common sense approaches to help you and others.

No question is wrong, so fire away anytime. At this time, I am trying not to overload you with too much.

If I may, I will send you a link to a support chat on Zoom I join, where you can chat with others with RA or just listen in. No pressure, see how you feel

[Adorable1 in reply to RAGuy]

Yes a link would be great. I’m taking in information to help myself so I can learn to manage things, so that’s great. Although you are right , I do get a bit foggy headed when overloaded 😆

I’m finding this community helpful and it’s so good to be able to ask when concerned. It alleviates some of the anxiety.

Thank you !

[Deeb1764]

if in doubt shout! It’s better to touch base and they can adapt, calm or discuss options and other things to assist you.

Part of the process is understanding your disease and how it affects you, so for my first year I kept a journal of what was happening and when. It took a long time for me to find a drug that worked ie 5 tried and now I am off medication and all hell has broken Loose!

So I call and find out what can be done but also accept some days the pain is there as it’s part of the process.

I also use The Wren Project for the periods my brain needs to rant and this has helped a lot too!

You will find your path 🥰

[Adorable1 in reply to Deeb1764]

Thank you. Yes it’s definitely a big learning curve.

I’m slowly gathering the information..

I do hope you get sorted out soon.

All good wishes to you.

[RAGuy]

Yes, that is another good tip from @Deeb1464. Journals are great for tracking symptoms and remembering how bad you got when in a consultation. Nowadays I use an app butthat is the same

[hazelcats]

As above, I was diagnosed in April after 2 years of chasing a diagnosis.hate to think what damage may have been prevented. Have osteoarthritis and fibromyalgia.The team at NRAS are amazing, I have had information leaflets and 2 or 3 chats with the supportive volunteers.

Also... I doubt there is a month goes by when I dont send a msg to the rheumatologist nurses for help or advice. They are there to help and support as best they can.

On a practical level, aside from meds,I use a mix of ice packs to help inflammation ( therapearls best ) and a flat heated wheat bag to sooth stiffness a little.

I know it can be a but overwhelming and scary, but I find arming myself with knowledge of these conditions helps me understand better. ( btw, do not Dr Google! Use respected sites,my GP recommended NRAS and Versus Arthritis sites )

And take comfort in knowing others understand how it feels, people on this forum are so kind and giving. X

[Adorable1 in reply to hazelcats]

Thank you so much.

Yes it’s worrying the time delays.

At least we do have those rheumy nurses and how knowledgeable are they! They’re very helpful I should imagine. I’m going to give them a call next week.

NRAS have been very good for me too. I found them and I’m glad.

I wish you all the best

[medway-lady]

Sadly RA isn't a quick journey and paracetamol may help but it might be worth a call to RA nurse to ask about NSAIDs or GP. Its very early days for you so and the RA medications unlike antibiotics can take 12/14 weeks to work. I'm sorry I wish I could say it'll get better quickly but it may not. Gloves may help and you won't be wasting their time but if you dont speak up they'll think all is well when in fact it isn't. You could be offered a steroid injection or GP might offer steroid pills but they are only a short term fix.

[Adorable1 in reply to medway-lady]

Thank you. Yes I’m realising just what it’s like…I guess we are somewhat amazing what we cope with too. Once we adjust. I guess some days are better than others…

My poor mum. She must have struggled a lot. No meds then for her. Just lots of pain killers ..

I’m appreciating this forum, it’s so helpful to get the different takes on it and the experiences of others, it’s invaluable

Thanks again