Flarey Friday

[TheMarfs]

Morning peeps. Woken up with a fun flare, right shoulder, both wrists and hands. My left wrist is visibly swollen on the outside joint. This is after yesterday’s fun scan which showed I now have a fatty liver, most likely because of the drug regime I am currently on. So, don’t feel I can take any ibuprofen now either. Feeling v low. Left a message on the helpline yesterday but haven’t heard back yet. I have not felt like this for such a long time so I’m v miserable today. Just needed to vent because I know you’ll understand. Xx

[Sunshinereturns]

I’m so sorry to hear this. That sounds so upsetting and awful. Are they going to adapt your medication based on the change in your liver? Have you any idea what could have brought on this flare? Even when I have no idea, I can usually trace it back to something when I think back and question everything - too much exercise or something I ate or standing too long etc. It helps a bit when you work out the trigger.

Pain relief is so hard as nothing truly works. The best thing by far that I’ve been given is etoricoxib. Possibly worth discussing with GP on phonecall? It does take a while to build up but it works and I took it every day for a long time. Also, although paracetamol is not effective on its own, teamed with etoricoxib it is helpful.

Sending a hug. It’s so horrible when it suddenly strikes you. Remember it will pass, you can do this, it is so horrible but you’ve done it before and you know you can do it. Have a bath, that’s always a nice comforting thing to do. Best of luck xx

[TheMarfs in reply to Sunshinereturns]

Thanks. I haven’t heard of etoricoxib. Is it an NSAID? I don’t know whether that will also be fun for the liver(!!)

I have called in sick (luckily my boss has a mum with RA so understands) and I have asked my lovely secretary to do the calls I needed to make this morning. I can’t think of what has caused it, tbh. Maybe the scan, haha.

Stupid bloody immune system. Xxxx

[HeadInASpin]

Sorry you feel this way, yes we really do understand. I’m in the same boat with liver problems so am avoiding pain meds too. Take a moment and think about all the tips and tricks you’ve learned along the way that have worked for you. Heat, cold, rest, gentle exercise, any particular foods, etc? When I’m really unwell I sometimes forget to try the things that have worked in the past. You have every right to vent and we’re all in this together so more than willing to listen, but remember this will pass and you will feel better than you do today. Big hugs 🤗

[TheMarfs in reply to HeadInASpin]

Thanks. I think rest and cushions and the TV. Have had a very hot shower this morning, but might also have a bath later. Might order a new hot water bottle…!!

Thanks for being so kind xx

[Flipper12345yellow in reply to TheMarfs]

Flares are awful. I would love to be able to have a bath, sounds wonderful,enjoy and all the best x

[Madmusiclover]

Gentle hug. Xx

[1ChLoE]

I truly appreciate this site. I hope your flare settles very soon. Hope and your liver scan can be sorted with change of medication or something. I’m in the middle of a RA flare at the moment and it not great. Sending gentle hugs

[Flipper12345yellow in reply to 1ChLoE]

Hugs to you too x

[sylvi]

Gentle hugs darling, it is no fun is it when your in that much pain. xxxxx

[Lester23]

Sending you a big virtual hug!

[Gnarli]

Sending healing thoughts and a huge virtual hug.

[TheMarfs]

Thanks everyone, you’re so incredibly kind. I crumbled last night and took two Nurofen…(!) i guess my liver is already rubbish, so what’s two more tablets 🙄 (no reply from the helpline as yet).

Anyway, my shoulder is still hurting but not nearly so bad (yay for being able to lift my arms up above my head!!!) and my hands still aren’t brilliant (especially my right index finger which refuses to bend, and I can literally feel my wrists and knuckles!!!) but I’ve had a very hot shower and I am on the sofa with tea, a new magazine and one of the cats. I’ve even managed to do a laundry load (Saturdays are for towels & bedding!!).

I am so, so grateful for the support, understanding and hugs. I really needed it.

I hope you all have lovely pain-free days

Xxxxxxx

[Sunshinereturns]

I hope things are on the turn now. That sounds so awful. Sounds like you are doing all the right things xx

[TheMarfs in reply to Sunshinereturns]

I still haven’t heard from the helpline, which is immensely frustrating. I left a message with my consultant’s secretary to ask whether I could take ibuprofen and whether the scans meant i was going to have my drugs changed, and explaining that I was hoping to go on holiday in the next two weeks and should i just continue on, despite the scans. Not heard about that, either. I just feel ignored and unimportant and my right hand and both wrists still aren’t 100%. It feels isolating and miserable and I have felt this way a lot over the last couple of years. I know the NHS is swamped but unless I stamp my feet and shout, I just get very little response. I don’t think i’m asking too much. I was so cross earlier this year when I got a letter from the team after a blood test asking if I had had a drink beforehand, but the test was at 9am ffs, and I can hardly drink because of this stupid illness. I felt so insulted and annoyed and upset by that question. I feel very unsupported and alone with it this week.

I cannot live a full life at the moment. I feel v low. I haven’t had a week off since Christmas, I need a holiday and I have a stressful job. I wanted to go out on a mountain bike ride on Saturday but couldn’t. I am tired and I don’t have a lot of energy to keep fighting for myself this week.

Probably not the best response but it’s the truth. Trying not to cry at my desk.