First big flare: Hi, I'm a long time lurker but new... - NRAS

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First big flare

trackit profile image
14 Replies

Hi,

I'm a long time lurker but new poster.

I've had RA for about 3 years , taking MTX and folic acid. It's been pretty stable up til now , not pain free but livable. Yesterday I woke up in the early hours with a very painful shoulder and swollen wrist and thumb, I managed to get a docs appointment luckily with a clued up doc. I work in a kitchen so I thought perhaps I'd done it working but the doc said probably a flare and referred me for a shoulder x-ray. So I'm on the magic steroids for 5 days. I'm due a rheumy appointment so I'll chase that up.

This is the first "big" flare I've had, had some minor ones but nothing like this, work aren't happy, but what the hell can I do? I've got one year to go til I can retire, I could do without the work stress!

Sorry just venting,feeling sorry for myself :-(

.

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14 Replies
oliviagodfreyxx profile image
oliviagodfreyxx

i usually use lots and lots of heat pads for my shoulder, it’s an awkward place to have a flare up but it’s one of the most painful!

not sure if you have access to any but i usually take cocodamol when having a bad flare up and it helps a little. i’d recommend either an ice pack or a heat pad or a hot bath or shower and something to try and take your mind off it, maybe some tv or a book. also have lots of pillows in bed so you’re not laid flat. i have one of those triangle pregnancy pillows to keep my arms in place when sleeping, they’re really comfortable and are better than regular pillows.

for wrists i have a wrist support and stick a heat pad to the fabric. not sure if any of these help but anything is worth a try when you’re in pain!! have you tried cbd oil?

i hope your flare up goes soon :)

Mmrr profile image
Mmrr

Lots of good advice by Olivia can I just add sometimes you just have to have a couple of duvet days and be kind to yourself...no stressing over work as you will only make things worse. Watch TV , read a book if you have the concentration to do so and drink lots of fluids.

Best wishes.

trackit profile image
trackit in reply to Mmrr

Thanks both for the advice, I am taking cocodamols they do take the edge off. It's difficult getting the heat pads to stay in the right place, but they do help. Yes I'm not rushing back to work , thanks again

AgedCrone profile image
AgedCrone in reply to trackit

Have you thought of getting a heated throw...I just bought one & you can wrap it around any part of your body.

Admittedly you can’t walk around with it very easily but it is very comforting

KittyJ profile image
KittyJ in reply to trackit

trackit I have a heated shoulder cape thingy. It goes up round your neck and across your shoulders and has poppers at the front. I find it very helpful. It's very similar to this kind of thing,

amazon.co.uk/Sweet-Dreams-L...

So sorry you are stressed and in pain. Like you was on methotrexate and folic acid for 3 years and doing ok. Then I got a big big flare lasted months now trying other meds as well. Your disease is obviously active at the moment. With luck it might be short lived. As for work. Are you self employed or a casual worker? If you are employed you are entitled to statutory sick pay. Does your employers know you have RD? You do have rights . My ex boss wasn’t very understanding and made it clear she wasn’t happy but there wasn’t a lot she could do .With holiday and sick entitlement you can have less working time this year so you can feel less stressed .feeling sorry for yourself is allowed.

trackit profile image
trackit in reply to

thanks, yes I'm working full time , I've been open with them about RA, sometimes think they understand but then it all gets forgotten. It's a very stressful job , luckily my line manager is helpful, but higher ups don't get it. Stress doesn't help plus the fatigue. They will just have to suck it up, I'm not going back until its back to normal I have a fit note for 2 weeks, I may not need the whole 2 weeks but I have been told to rest so thats what I'm going to do :-)

no idea why this is in italics im typing left handed lol

in reply to trackit

😂😂😂 I don’t know how you did italics either... good idea take your time. This bloody disease turns little things into dramas. Rest up look after your self.

KittyJ profile image
KittyJ in reply to trackit

You've used a shortcut to turn on italics probably. I often do that as my fingers don't go where they should anymore. Annoying 😊

junik53 profile image
junik53 in reply to

You can retire through ill health now and your company should be able to pay the pension that you would have earnt had you retired as normal,its a bit of a faff but worth it,and it takes a little while(months)depending if your company has done it for anyone else.But you could always go sick untill it comes through.You just have to see occupational health and they do a report on which bits of the job you cant do on your worse days,also they will contact your doctor.They do the rest,you just have to wait.Contact your H.R.dept to get the ball rolling.It is easier to manage the rd. when not at work.I did it and havnt looked back,and it gives you time to go to appointments and attend excersize class through physio which has been a godsend to me.Good luck xxx

Kazwilks profile image
Kazwilks

Hi

Methotrexate did not work for me I only managed 6 months on it . Maybe it's time for a change of meds. I am now on Benepali injections, I am virtually pain free. I have gone from wearing wrist splints daily to not wearing them at all. I have been injecting approximately 30 weeks now, the only downside is trying to find an injection site that doesn't sting. I retired from work 2 years ago due to ill health, I really do feel able to go back to work and am considering doing something part time. I wish you well but dont rush back to work take some time to heal. It's a very debilitating disease what we are all living with, employers should be made more aware of this fact and have a bit more consideration. Take care and hope your flare subsides soon

Bandido profile image
Bandido

Over 12 years now on MTX and I do remember that doses weren't doing the job at first. Then I upped to 10 (tot 25mg) week and the magic happened. Yes you get flares from time to time and also had period earlier that did some permanant damage to metacarpals. Most of the time nowdays I don't have any serious problem that Ibuprofen cannot mitigate. Long term use of MTX seems to have caused Polyneuropathy and I am sure that that long a term on anything will cause something. Yes I have pain that moves around to keep me alert and I even have a nice blue badge to help me cope. I live with it now amd a surprisingly healthy 74 year old even though I do have a list of problems I am content with my abilities. The steroids caused more long term problems than they are worth and I will always be against their use except for extreme conditions and only for very short periods of time. Their long term side affects reduce quality of life.

trackit profile image
trackit

I thought I'd update this. I had a shoulder x-ray luckily it's not showing any damage, hurray for that!

Today is my birthday and I had a little trip to the hospital to see the consultant, they are brilliant there :-) I did get a cortisone jab in my wrist which should sort that for a while. so everything back on track hopefully.

I agree about the steroids eteams, I've only ever been given max 5 days worth, and then only for acute swelling, they do work magic but like you say theyre very bad. This is only the second cortisone injection I've had in 3 years so not bad going I guess.

in reply to trackit

Happy birthday... good news no damage. Hope you feel the benefit of jab soon🥳

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