RA Flare management plan

[Naturechild]

Hi folks a friend with AS suggested that I develop a plan for dealing with flare ups to aid faster recovery. I'm finding it a bit tricky to factor in or sepatate out the combined effects of Cfs, fibro, OA and RA and knowing when to rest or be active. Does anyone have any advice or suggestions on how they manage a flare? Many thanks in advance for your suggestions

[AgedCrone]

If you find a way….let us all hear about it…I don’t know anybody who has managed to do that yet!

I think most of us just pray it goes soon!

[Naturechild in reply to AgedCrone]

I'm definitely getting a sense of this myself AC. I'm trying to think prevention strategies mostly, such as listening more to my body in general and spot triggers to avoid/reduce e.g. sugar and stress, not enough sleep, getting over tired etc. but only time will tell if it makes a difference. Also figuring out what I can add in to help - not just take away.

[AgedCrone in reply to Naturechild]

Tbh just taking life at a sensible pace, resting when you overdo things is of course ideal….but if you work that is often impossible. One thing I do find helpful is to keep well hydrated all year …not just in the summer.

I eat what I fancy…but am lucky in that I don’t put on weight…but if you do …eating sensibly will help…lots of fruit🍏 & vegetables, 🥦rather than burgers🍔 & chips🍟 No smoking, some aclcohol if your rheumy agrees, & walk when you can rather than drive.

There is no super duper RA diet . Some people do go gluten free…but unless you have a condition you know merits that….why do it?

I’ve survived RA for 20+ years just eating what I like…I know I wouldn’t stick to a diet if I didn’t like the food…so why try & fail?

Basically it’s common sense …and as one doesn’t normally know when a flare is going to arrive how can you plan for it to go? Especially as every flare has a different affect. …at least mine do….thankfully I’ve almost grown out of them now!

Good Luck…..just take care of yourself & don’t think because you read a drug disagrees with somebody…..it will disagree with you…..& don’t give up on a drug too soon….many a person has missed the drug that would really have helped…if only they,d given it a bit more time.

[bpeal1]

How long is a piece of string? I tend to deal with each flare as and when it comes along. Depending on how bad it it is and how long it lasts depends on what I do. If it’s not too bad and I know it’s because I’ve overdone things I try to rest up for a few days. If it’s really bad I phone rheumatology straight away. If it’s one or two joints I may splint them and/or ask for a steroid injection. If I’m about to go on holiday I’d probably contact rheumatology sooner. Not sure I’ve helped at all!!

[Naturechild in reply to bpeal1]

Thank you bpeal you have helped. I think what you say sounds really practical and helpful. I'm still at an early stage apparently so flares not too severe and trying to get a handle on doing what I can to help myself and stop things progressing if that's possible.

[medway-lady]

Can your friend explain how ?

[Naturechild in reply to medway-lady]

Hi medway-lady , my friend says that when she has a flare she allows herself a guilt free day of total rest, then takes it easy the next and on the third day she does as much aerobic exercise as she can and apparently this really helps her - but this is a different condition so perhaps the needs are different. I do know that sometimes she has said she has begged for steroids so I guess its not always a doable plan and a little short at three days for me but it made me wonder if there were any self care things for RA that could reduce a flare such as when to introduce movement for an affected joint - but I guess reducing inflammation should come first?

[Deeb1764]

I have diabetes ra oa fibro and others and I would love to try this system BUt if I wake up and fibro kicks in with no warning all plans go out the window. If RA hands are swollen hands out for the day. So for me I find it’s too random to plan i go by how I feel then pace or zonk out!

I have things I can do on what I call amber days BUT it takes a while so it might be clean bathroom sink but on a red day I get nothing done!

What does your AS friend do?

[Naturechild in reply to Deeb1764]

Hi Deeb, Thanks for your reply. I understand the variable symptoms bit and coming to the conclusion that I have to try to reduce the CFS/fibro stuff first (RA makes all this worse of course), at least in terms of daily living habits and trying to build in some kind of consistent level of ability. The RA has thrown it all for a loop !

I answered medway-lady above re what my friend does so I'll just copy here.....

my friend says that when she has a flare she allows herself a guilt free day of total rest, then takes it easy the next and on the third day she does as much aerobic exercise as she can and apparently this really helps her - but this is a different condition so perhaps the needs are different. I do know that sometimes she has said she has begged for steroids so I guess its not always a doable plan and a little short at three days for me but it made me wonder if there were any self care things for RA that could reduce a flare such as when to introduce movement for an affected joint - but I guess reducing inflammation should come first?

[AgedCrone in reply to Naturechild]

Don,t be fooled that steroids are always the answer.If you get hooked on taking them every time you have a flare …you are on a road to nowhere.

[Madmusiclover]

Yes. Wait for it to go away. If you find a way you should market it: I’ll pay.

[Naturechild in reply to Madmusiclover]

Hi Madmusiclover, I shall take this a personal challenge and start my business plan just as soon as I've had a nap, caught up with yesterdays dishes, then had another nap......😅

[Madmusiclover in reply to Naturechild]

😂😂😂

[Vonnie10]

Mines a mixture e of ra oa and carpel just ride it out speak to you nurse at clinic.

[Naturechild in reply to Vonnie10]

Thanks Vonnie, the nurses in my area are good but just trying to find out if there's anything I can do to improve the situation with self care or prevention....and hoping there is.

[Vonnie10 in reply to Naturechild]

Can physio help with splints I had some resting splints made last week they look hideous but if they help I'm all for it. It's difficult when you have a few issue going on trying to work out what one is causing the problem.goodluck.

[Naturechild in reply to Vonnie10]

Thanks Vonnie. I use a wrist splint for anything taxing on the joint which definitely helps. Bit of a pest for typing and writing but my tendons complain without it. Haven't heard of resting splints but will look into this.

[Vonnie10 in reply to Naturechild]

You'll have ti be referred for resting splints goodluck

[Runrig01]

I have AS as well, and we are encouraged to put an Action plan in place, for dealing with flares. It’s mainly common sense. Mine usually starts with ensuring my pain meds are always by my bed, in case I can’t get up. Followed by very gentle stretches whilst still on the bed. Normally I use an electric yoga mat, with inflatable air sacs to stretch my back, ribs and neck, but it needs to be on the floor. Focusing on breathing is another, although I struggle with diaphragmatic breathing, which helps with relaxation. This is because my ribs are fused and I have no chest expansion. Having heat pad near my bed helps. In winter when it’s bad I get “Alexa”, to switch on my electric blanket, without having to move, and that helps loosen my tight muscles. I also ensure I also have several ice packs ready to use. If able a hot shower or bath with Epsom salts. Then they advise having distraction tools, which may be relaxing music, a good book, a good film or comedy dvd, or possibly using one of the many mindfulness or meditation apps. Many a time, this has all enabled me to get out of bed. I also keep a snoozle sheet in bed with me, which is basically a silk tube, that your hips lie on, and helps you turn in the night. I know many use an old silk type nighty for that purpose. I definitely feel it helps having this all written in a plan, as when pain is intense, it’s easy to forget one single thing that may just help. If none of this helps, then at the end of the action plan it reminds you to contact your team for a meds review.

[Naturechild in reply to Runrig01]

Thanks for your reply Runrig, all of those ideas are solid advice. I think that I already have a kind of plan (not written down though) as I've had similar issues for years with disc problems and then the fibro (RA only recently added in). Staying mobile definitely helps. The last time my back went and I couldn't move I distracted myself from panic about not being able to get up by taking the bedside painkillers, listening to stuff on Youtube and very gentle movement until the worst of the spasm eased off. I haven't heard of a snoozle sheet before but use my clothes to help me turn when its bad. I guess I maybe know more than I think I do and should write things down to remind me as yes when you're in agony you can't think straight.

[Sunshinereturns]

I have made a kind of ‘plan’ that doesn’t make it go away but makes it slightly better than not doing these things. I have them written as a list as in the middle of the night if it comes on all reasonable problem solving goes out the window. It always always starts/gets worse at night. But it’s nothing special, just stuff we all do I’m sure.

I have ice packs in bottom drawer of freezer (ice does help a bit), a prompt to get up for painkillers at the first proper discomfort and not wait until it gets worse, pile up my pillows and stay sitting up in bed and listen to audio book to take the pressure off not sleeping. I go for a bath even in the middle of the night if I feel it might help. In daytimes I cut out sugar, also no caffeine after 5 and get fresh air in some way. Long soak in bath. Like I say, obvious stuff but what else can we do?

[Naturechild in reply to Sunshinereturns]

Hi Sunshinereturns, slightly better is good. It all helps to get a sense of control and takes some of the stress away if you can do something to ease things. These are all great ideas that I shall take on board. You've reminded me about baths too. I forget that that showers are not the only option.