Sharing the pain

Farahoff

Last night I had one of the worst flare ups I can remember. My left wrist started seizing up around 10:30pm which is a lot earlier in the night than usual. I took Diclofenac in the hope to stem the pain. Last night I had my 8 year son in bed with me (a Friday sleepover tradition we started since they can’t have sleepovers with friends). I waited until he was asleep before I started writhing in pain. The hours kept dragging and the pain didn’t subside. Tears streamed down my face, I just wanted to scream out in pain. I tried breathing exercises, hot cold therapy, numbing creams, massage. Nothing would work. So I took some cocodamol on top of the diclofenac then started to feel sick as I hadn’t eaten in a while.

After a while I tried calling the Samaritan’s for someone to speak to in the middle of the night. No answer. I didn’t want to wake my husband as I know I would be a write off in the morning and I knew he had to be awake to take care of the kids as it was the weekend.

Anyway, the hours passed by in the most excruciating pain, when all thoughts ran through my head like if there would be some relief if I cut my arm off? Should I walk to the local A&E and demand some morphine. Anything to stop the pain.

Finally around 11am almost 12 hours since the pain started did it calm down. My husband has taken the kids out for some fresh air and now I am going to try and sleep.

This is the first time I have posted on here. Not sure why I am. I hope that sharing my experience can help me or others going through or having been through a similar experience living with Rheumatoid Arthritis.

Goodbye.

anneb82

Hello @Farahoff

Welcome to the online community and thank you for sharing your story with us. I hope that you will find that this is a friendly and safe space for you to share.

You had an excruciatingly painful night last night with pain in your wrist. You tried many ways in which to relieve the pain, but nothing helped at all and it wasn't until this morning that you were able to get any rest. You have Rheumatoid Arthritis and are wondering if anyone else has had a similar experience.

I am so very sorry that you were in that amount of pain. I know from personal experience that my pain always feels worse at night. There is something about being tired and in pain and trying to fight to fall asleep that feels like one of the worst feelings in the world. I hope that you don't go through that again.

I've included a couple of areas of information for you below, with the hopes that they will help you. From the sounds of it though, you already tried most of what is suggested when in pain. I am hoping that members of the forum will see your post and share their experiences with you and that that will help in some way.

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

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

Once again, I hope these are of help to you. Please continue to share in the forum and keep is updated.

Take care

Anne (Moderator)

Lilymary

Hi @Farahoff , I’m so sorry you had such an awful experience. You’ve found the right place to offload, pain is what we “do” here.

That night must have felt endless, and you tried so hard to deal with it on your own to avoid disturbing your family. And even when you reached out to others for support, it was one of those (probably) rare times when there was no one free to help.

i’ve never had a night quite like that, and I hope you don’t have another, but remember that being a wife and mum isn’t just about putting others first, it’s about them supporting you too. While he couldn’t take your pain away, wouldn’t a hug and someone to,share show you’re feeling have made it seem like a less harrowing experience? and if this means your husband losing a few hours sleep, it isn’t the end of the world. They’ll catch up on sleep the next night, but you won’t have to go through that alone again.

Meanwhile can you speak with your doc and get a referral to the pain clinic, You shouldn’t have to deal with that level of pain. I hoe they can find ways for you to be able manage this better should it (heaven forbid) happen again.

frogmorton

Oh my goodness @Farahoff

what an absolutely awful night you had 😕

I have indeed had many nights like that myself, nights where even the weight of a sheet feels like a hot knife. I tend to stop trying to sleep, get up take the painkillers (with food!) and try hard to distract myself with the TV on low or an audiobook until I see the sun rising. 'It's always darkest before dawn' is so true.

I wonder whether it's time for a meds review. Can you get on to your Rheumatology team? It may be they can give you a depot injection or a short course of oral steroids if this is still on-going or even that your DMARDs need looking at again.

All I can do is offer you a huge ((())) and hope things are improving for you. Do please let us know how you are.

Farahoff

Dear @anneb82 @Lilymary and @frogmorton,

Thank you so much I for your kind words. It has really made a difference. I managed to get 12 hours sleep straight last night and things feel better today.

Just reading your comments made me feel so much better. My family are great but sometimes I don’t think they really understand what it feels like plus it upsets them so much to see me like that during a flare up.

This is the third worst flare up I can remember having since being diagnosed 5 years ago. I had my first vaccine jab 9 days ago so I don’t know if it just a coincidence. If it gets worse I’ll definitely follow up with my GP/Rheumatology department.

Thank you again for taking the time to comment. It is really appreciated.

Take care X

Lilymary

@Farahoff I’m glad the flare up has subsided, and that you managed to get some sleep. I doubt it was the vaccine given it was over a week ago, but I hope your medical team can help you so you don’t have to go through that again x

frogmorton

@Farahoff

It could easily be the vaccine. Many of us (and many who do not have arthritis - our partners!) are mentioning extra (or new) pain afterwards. you are wise though to contact your Rheumatology team if it doesn't settle. ((()))

No need to feel alone here. We all understand.

Our families are great, but no way do we want to dump all of this on them so we share it here instead sometimes🙂

Take care and keep posting! It helps

Rio

I have been in total flare up for 2 weeks (since my 2nd vaccine) Usually very controlled with my 6 monthly Rituximab infusion. Had Arthur for 30 years now and feel I’ve gone back in time with all this pain! Shoulders, hands, neck and hands all affected and can’t have any steroids etc until 4 weeks after my vaccine. My infusion is booked for 30th March yipeeeeee! Can’t wait for shielding to end and see my family and back to work

ChrisK

Good morning Rio

Welcome to our Versus Arthritis forum. The members here are friendly, helpful and empathic. They will answer your questions/queries as they happen to them in respect to their own condition.

You have an appoint for your next infusion which you say will help with your pains. Shielding has been going on for over a year now, but the end hopefully, is not far away now.

Above are links to the various booklets and leaflets that Versus Arthritis produce.

I look forward to seeing your future posts and reading how you are getting on.

best wishes

ChrisK

Lilymary

@frogmorton @Rio , I stand corrected. I was fortunate that I had no reaction immediately after the vaccine, but my hip has been awful lately, which I put down to shinning up too many ladders last week (I never learn). Did you have your inflammatory reaction immediately after or was there a delay?

Farahoff

Hi @Lilymary and @Rio,

I had my vaccine on 10th March and my worst flare up on 19th March and a milder one of 22nd March. Strangely a friend of mine who has epilepsy said she felt like a seizure was coming on 9 days and 11 days after her first jab (like me). Might be a coincidence or an interesting study.

@Rio I am so sorry to hear how bad your flares have been after the second jab ; (( Fingers crossed after your infusion and the second jab coming into effect you will be able to get back to some sort of normality!

Do you mind me asking which vaccine you received ?