Inflammatory Athritis

Cassienova

Hey everyone,

I've been suffering from (but only recently diagnosed) with inflammatory arthritis in my hands for a year and a bit, I've just turned 27 too.

It feels like its completely destroyed my life and its been agonizing to get support and right meds that don't cause my entire body to fall apart. I can no longer do the things I loved and my worklife has gone out of whack because I cant keep up anymore.

Not sure what I can gain from this site but I suppose advice would be great.

Chris_R

Hi @Cassienova

Welcome to the online community great to see you posting,we are a very supportive community as everyone on the forums have some form of arthritis so know what you are going through, young and old,so you have come to the right place to meet and chat to others who will give you good advice and ways of coping with your arthritis which you say you have recently been diagnosed with, inflamatory Arthritis in your hands .

My daughter was diagnosed with Arthritis at the same age as you and she found it very distructive she was supported by a network of people in the medical field who helped and understood her, you dont say if you have that medical support and if you dont you should be recommended to a nurse at least.

Here are a few links that may help

https://www.versusarthritis.org/research/information-for-researchers/our-approach-to-research/research-advisory-groups/adult-inflammatory-arthritis/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

I do hope these links will help you,please keep in touch and tell us how you get on and do go on our forums and chat to others it often helps.

Take care and all the best Christine

frogmorton

@Cassienova I'm so glad you've found us here (I have a niece called Nova) it sounds as though you're having a tough time and hope your meds will help you sooner rather than later. You wonder what you can gain from coming here?

you can gain our support and the feeling of not being alone we are here if you want us.

You can gain reassurance when things take time to settle

You can gain our experience.

You can pass your own experience and tips on and feel you have helped others in time as well.

You can get reliable information from the main VA site too.

I am sending you some ((())) and hope you'll decide to hang about.

Take care

Toni xx

Cassienova

Thank you both this is very sweet, I don't receive much medical support unfortunately just two meetings with rheumatology which are usually trying to get me in and out as quickly as possible, my next one is in Nov this year so they arent very frequent.

I would love some tips on what you can do whilst in pain, since a lot of my hobbies are no longer viable or even things you felt soothed the flare ups, I currently find ice packs and cooling gel help a little but anything else would be a great help

frogmorton

Morning @Cassienova

Ice is great for inflamed joints and is the only thing which helps them for me when I flare.

What sort of hobbies did you do? Some can be modified....?

I enjoy a jigsaw, reading and listening to audiobooks (watch them they can make you fall asleep then you lose your place!). I also still crochet (I have chunky handles on the hooks) and love my garden. I have mostly raised beds and a good seat to sit on and really do not overdo it these days.

Coming here can also be a good distraction.

Take care

Toni xx

Cassienova

@frogmorton

I was a massive video games players and I love to read, write and paint.

I just really struggle to use a keyboard and mouse (I have an office day job too) and hold a book without being in pain.

frogmorton

Have you tried an ergonomic mouse I have one it took some getting used to, but it's ok once you get the hang of it.

You are a gamer...hmmmm not an easy one as you need to be able to use your hands quickly.

Meds meds need sorting so that your pain gets under some control.

Writing is potentially easier as you can get voice activated software to write for you and reading a lot of us use audio books as well as kindles with kindle stands for comfort.

Somewhere there is a hobbies thread and you'd be amazed what some of us do - not me i have no talent whatsoever!!

You will get there I'm sure

Toni x

AmandaBoy

@Cassienova you are not alone! I was actually just going through chats to find some support myself and you seem to be going through exactly what I have recently.

I was told I had OA but I fought it as my fingers and wrists were so swollen in part and painful.

I eventually got help after a locum GP told me to pretty much demand support from the rheumatology clinic in my local hospital.

Does your rheumatology dept have a specialist nurse line for advice? I pretty much cried down the phone until they said they would do more bloods. Results came back with elevated inflammation and a vit D deficiency....I'm only 45 and normally active with a healthy diet.

Following those results I was put on treatment. If you have access to specialist nurses....get on them (nicely of course 😂)

Separate note, I'm always here for a rant or a shoulder. I use a stylus with a silicone grip for typing but am hoping work can get voice dictation (I type a lot but my job is community nursing as a band 4 so I drive a lot as well)

All the best and good luck!

Amanda xx

Cassienova

@AmandaBoy its incredible hard and has been such a difficult continuous journey.

I just spoke with the helpline (more like cried for an hour poor lady) and she said to speak with my rheumatology nurse Monday so that's the plan.

I might have to look into a grip for my home tablet but work is being incredibly unsupportive right now so I'm trying my best with a laptop (I connect this to my personal ergonomic keyboard and mouse with my computer monitor when I'm home)

Thank you so much for your kind words ☺️

Sharon_K

Hi @Cassienova

I just thought this link about work might be useful for you to read up on. You are entitled to reasonable adjustment and there is a great scheme called access to work that can provide amazing kit to help you including talking software so that you don't have to type so much. Hope it helps

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/work/

keep in touch and let us and our members help you find solutions that work for you. As @frogmorton says there is loads of experience here

Best Wishes

Sharon