I want top tips for managing RA

Hi Health Unlockers

I know we are all individual but Ithought it might be nice to hear from any/everyone regarding one tip that they have found helps them to manage RA positively.

Cheers

Fiona x

[Hidden]

Hi Fiona thats a really good idea.

For the last two and a half years I have tried really hard to be positive but at the moment I feel so down with it all. ...... top tips would be useful.

take care Sue x

[Hidden in reply to Hidden]

Hi Sue

Sorry to hear you are feeling so down. It can be hard at times to remain positive in the face of the junk that RA life throws at us. Sometimes it can help to just say right this week (or few days!) I am going to take all my meds, keep the pain relief topped up and allow myself to be me.

Try to keep occupied doing things you enjoy (as well as the necessary stuff of course!) and try not to think about the RA. Each time RA comes to mind don't take it on board. It might like to travel alongside us but we don't have to have it in the same compartment continually!

Try to take back the control, yes it is a travelling companion but it is not in the driving seat unless you allow it to be.

Chin up, feel better soon,

Lyn x

[Hidden]

Amongst the many things that I feel can help you get through life with RA in a more positive way my top tip has to be to learn to pace yourself! My first blog on HU:

nras.healthunlocked.com/blo...

Still think acceptance and positivity goes a long way too!

Lyn x

[Hidden in reply to Hidden]

Hi Lyn I agree completely. Pacing ourselves, being positive and learning to accept Ra are the three most important things.

mand xx

[Catwoman66 in reply to Hidden]

Pacing myself was the best advice I ever had. From you I believe! xx

[Hidden]

hmm try/ trying to stay postitive...( acceptance is hard I WANT to fight the beast! and when things are bad its soooo hard.... try and have a good circle of friends.. be it real or on this great site... I TRY not to moan too much to my friends as they will get bored or wander off.. even the nicest people struggle with illness of friends....... the most indifferent people have been some of my work colleagues...... trust me the caring face of the Nhs ISNT that caring at times... but it is slow lumbering beast in financial crisis.. well my local one is..... rapidly trying... to mov e health elsewere.. and well health up to speed.. maybe move myself....

[Penguin]

As LynW said - make sure you take all your tabs and don't be afraid to use pain relief too! You're not proving anything by struggling through without paracetamol (or whatever). I also have a wax bath for my hands when I need it, a TENS machine and a front-fastening neck brace. Hardly ever have to use any of them but they're there if I need them! (So long as I remember I have them!)

Also I find pacing myself to be EXTREMELY important. It's not good saying, 'I'm just going to battle through with my usual routine' because that'll just make things worse. On the other hand, to stay positive I definitely don't get into the thought pattern of 'I mustn't plan anything in advance, because RA might get in the way.' Yes, it might, and it often does, but you still have to make plans and have things to look forward to.

I also grab any help going - but at the same time make sure I stay independent as much as I can. So for instance I make sure I get referrals to physio when I need them and go and nag the doc if I need to. And make sure I don't turn away offers of help from good friends and colleagues.

Summer's right, I think - you can't spend all the time moaning to your friends or they start thinking, 'Where's the Penguin I used to know? I don't like this one!' On the other hand, a REAL friend will at least listen when things are really bad, offer to help and MEAN it! They expect the same thing in return of course. If they don't do that, then perhaps they're not real friends anyway!

I'm extremely lucky to have a wonderful hubby who, bizarrely, enjoys housework, so that's one big burden taken away from me!

[Hidden]

thanks penguin... yes it sorts our your real friends....

[Hidden]

this is good stuff for me....Thanks guys xx ps Please keep it coming ! At the mom thismorning I feel stressed because Im supposed to meet someone for coffee and I feel rough and dont want to go at all.... but the thought of hearing her disappointment is awful too . Guess Ive got some more stuff to get through....... xxx

[Hidden]

pps Lyn I agree its sometimes gets that RA feels like us when in fact me is not RA !!! its something we have to not exactly make friends with but find our peaceful co existence with...if u know what I mean????

[lillyfran]

Hi all I would really appreciate any advise at the moment, as i'm feeling very low. Im constantly having flares as well as having steroid jabs and bucket loads of meds, nothing seems to work at the moment, im trying hard to stay positive, but RA is really pulling all my resolves and patients, i feel to unwell to work so worry about this, my husband is doing everything, which i find very hard to watch as i'm very independant person........ Advice would be gratefully recieved. Thanks,

[Hidden]

Hi Lilly fran

sometimes my husband does everything for me and the kids and it makes me feel really low too and very guilty. Some of the other gals with little ones have said about feeling a bad mum etc because of it.They are not of course.

Also lots of us have had/have serious financial worries due to impact on work. Myself included so my heart goes out to you.

The older wiser RA peeps have faced many RA challenges and will I feel be able to understand the longer journey that we are on ( give or take our different paths) hopefully you can hear more from them?

For me I think my golden tip is acceptance that I have RA Thats been the hardest ! Dont want to make ANY ADJUSTMENTS ! V P****D OFF ABOUT IT! LOTS ID RATHER BE DOING THAN RESTING! But accepting I need to pace is Damage limitation and my best chance of taming the beast followed by information to get the best possible treatments.

Please come on here again because you are amongst fellow sufferers who will understand your trials and tribulations u can moan its ok ! we all do it and feel better for getting it off our chests

fiona xxx

[Hidden]

Question- If you dont mind me asking and would share on public blog Wonky and lillifran

What brings you down the most about your RA ? For me its the tiredness and the pain and not being able to do normal stuff?

Love fiona

xx

[lillyfran in reply to Hidden]

I find not doing the normal things frustrating, i've always had my independance even though my husband is fantastic..... and its this determination that has got me through plenty of trials i have had in my life,,but this one i'm the looser.. i hate asking for help and find i'm always explaining why i can't do things that are so simple... this illness reminds me of my son Autisum's because there is no obvious signs there's not a problem!!!!

so people are less understanding..... i'm sure as time goes by i will be more tolerant as read a lot of you on here are... roll on that day... lisa

[Hidden]

this is fab stuff ladies yep pain . tiredness beyond tiredness im taking steroids just to stay awake.. no for pain.. too... frustration with a capital f

[lulul]

Hi I was diagnosed with RA 7 months ago and seem to have made little progress since then. I was a busy independent working woman and now I am off work and struggling to keep up with basics like housework/shopping etc. I have a fantastic family and they are great but I want my life back!! The pain is one thing but the fatigue is so debilitating. It is like wading through treacle every day..I fee I have lost my identity and am now 'waiting' for some improvement. I don't have time to wait much longer! x

[Hidden]

I know what you mean Lulu its almost like our families/friends have been hit by the rA as well as us. I feel I have lost the old me too. I think we will be ok because we will learn to become someone else in the end. Also some of the others who have been diagnosed longer say that it can take a while to find the right treatment but once you get on one that works you feel alot better. So we musnt give up even when we feel so depressed from the disease. Just hearing that lulu and Wonky and Lillifran are feeling just like me- makes me feel comforted. Weird isnt it- weve never even met. I dont even know your name and yet I feel I understand you all cos of the RA!

Keep connecting everyone we are stronger together than alone. xxxxxxxx

[Hidden]

My tips,

1) REST when you need to

2) rest when you dont think you need to

3) always keep on top of pain meds one slip up for me can mean a week of extra unwanted pain

4) wax baths and lots of them

5) electric heat pads

6) wheat bags

7) knee supports and ankle supports

8) wrist splints

9) coban wrapping

10) lots of aids for dressing

11) a bed lever and mattress variator to help you out of bed

12) a bath lift a hot bath feels great but not when you cant get out

13) accept all the help you can get

14) dont be afraid of letting people down when your bad if they care they will understand

15) talk to people dont make my mistake and let it all build up

16) go to an nras meeting its good to meet others in the same boat

17) dont overdo it, overdoing it can result for me in days without energy and increased pain

18) if you need walking sticks, wheelchairs etc get them

19) look after your feet, invest in good shoes see your podiatrist

20) keep moving dont overdo it but dont underdo it

[nutty]

You've had some great advice there, try not to stress yourself or let others stress you out, pace yourself, try to accept it also it's really hard to do that one believe you me, I still try to fight it and always come off worst. Take care.

[lillyfran]

Thanks for everyone replies,, this is a dreadful illness its makes me so frustrated as i can see it does other people too. which makes me feel im not alone, sorry to say!!! ive only been diognosed since october 2010 but struggled for years not knowing what was wrong now on top of it, i now have fibromialgia.. to go along with hypothyroidism, 3 autoimmine illness's.What fun!!! i don't understand that im taking 3 lots of medication and steroid injections for RA and still having flares, surley this can't be right, am i not supposed to feel better?????,,, i suppose with this illness i have got to learn to be patient. thanks again all,, the more i learn the better i shall be and can see i'm not alone. lisa

[Hidden]

Hi all

I have found the following helpful:

1. the rheumatology team locally who have been wonderful and very responsive. Struggled going through the steps and the time to get on biologics and then had a bad reaction to one of them but overall am doing pretty good now and know I have back-up when I need it - by phone, email or face-to-face

2. Pilates - I started doing this shortly after being diagnosed 9+ years ago as I needed to feel in some sort of control of my body. This has been a life-saver for me and I have worked on building my muscles to protect the joints. Have managed to do it at least a minimum even when could hardly move at all - sheer force of will to not to let it beat me I guess.

3. Podiatrist - to keep the feet in order and the shoes well-cushioned.

4. A partner who let's me get on with things even though he might think I am overdoing it - but helps when I ask for help.

5. Focusing on something else (eg work, radio, TV, papers, anything) helps me to put the pain in its place

6. Trying to keep as active as possible - similar to the Pilates I know I naturally feel happier when outside so if at all possible I try to walk or do some gardening.

7. Linked to the two above active involvement with local arthritis group to support the work of the hospital and others like me particularly when they are having a hard time.

8. Osteopathy - now with some added acupuncture - to help manage the ongoing and very debilitating pain in my neck and shoulders which immobilises me if not careful.

9. And probably just being me and hence rather bloody-minded and determined to keep going!

So all in all I think it is a matter of both finding the meds that work for you (helped I know by having a great and clued in rheum team), finding ways to offset the pain that work for you, and enjoying life (don't let this damm thing beat us!)

Keep going all

Skippy

[abednegomonkey]

All the above are brilliant.

For me the most important is pacing myself. As I am 'slow' in the mornings I never plan anything before 11 am. This seems to keep me able to do a few things in a week that I enjoy. An early morning can leave me exhausted for days.

I do also have a cleaner once a week - I decided this was money well spent. She also irons and changes the beds or tidies cupboards. I've mobilised the kids too. This saves my hands and wrists from getting sore.

I also belong to a pain support group - where we have lunch out once a month, a monthly meeting and I do hydrotherapy with them once a week. These are a great group of people and we all understand how each other feels - but can have fun together! I do seem to be the youngest - that there are 2 others 2 years older! Then there's a bit of an age gap!

After 14 months - I think I have at last got the medication sorted out!

[sylvi]

Hi all,

I can understand all what everyone has said here. Not looking like someone who has a debilating disease gets me. I get weird looks when i'm out on scooter. I find it hard to walk very far. Tiredness gets me, i have to go to bed in the afternoons even if i haven't done anything. It helps, but it annoys me no end. I have trouble holding a pen and even typing this as my fingers don't want to work. To cheer me up i paint my nails all different colours. I'm in the process of growing my colour out of my hair, then in may i'm having it all recoloured. When its done i'll post it here. I get fed up with not feeling normal, whatever that is now. I feel old before my time, i've got friends who are a lot older than me who are fitter, that hurts me, as i feel i should be able to do more. I live outside of Coventry and i feel isolated as unless hubby takes me i can't get far. Hubby bless him is marvelous, i couldn't carry on without him.

[Hidden]

wow ladies and gents got some grat tips thanks

[Tricia-P]

Hi All

I think the support we have on here is amazing just to read what someone else is feeling is wonderful.

Accept help hubs bought the iroing board and iron clothes to kitchen for me.

I sit on my stool all splinted up and iron not so good today with carpal tunnel op it's not healing well. so not pristine pressing.

Hubs will put clothes away when he comes home.

I go out doing a bit of weeding and pruning but leave the bits in a small bin then hubs puts in the composter.

Use gadgets in the kitchen, electric can opener, grater over a box stood on non slip mat.

NON SLIP MAT ON A ROLL cut off what you need poundshop or homebase etc.

Tricia x

[Dave]

Following my first ops ( a repalcement shoulder, followed shortly after by a replacement elbow ,both incidentally on the left ,I'.m left handed) I was watching a program on channel 4 entitled " A Brush with Art" ( Alwyn Crawshaw)

I thought I can do this... since then around 1992 I have lost myself in this wonderful world where all the pain seems to disappear albeit for a short while but it has kept me sane and able to cope with my RA.

As Alwyn says give it a go anyone can do it.

For those interested go to ( waltonartclub.co.uk look at the Gallery section and you will find my name, click on to this and see my work.)

Incidentlly I have now had a further 8 operation and still find time to enjoy my life.

[Hidden]

Thats another one Dave..... if you hadnt had RA would you have started to paint? Thinking about our identity and how we lose it with RA yours has changed in a positive way so that you have become an artist. Ok so you would probably have preferred not to have RA but still something extra is here because of it.......... Going to look at your work .. BIG SMILE NOW! ( icant do smilies yet!!!)

[Hidden]

Hi All

There's plenty of tips to be going on with here! Are you still working your way through Fiona?!!

Can I make a suggestion though? Without wishing to break up the 'little band of merry rheum mates' there seem to be a lot of people visiting this' blog' site who are in need of support and help with day to day living, medications, coping strategies, etc. Majority of people using Health Unlocked are fairly newly diagnosed with just a few of us more long serving RAers (a position I'd prefer not to have but heyho!).

The NRAS Web forum, nras.org.uk/ ,may offer much more help and information than is available on here; there is a search facility, and many more members with life experiences to draw on. Everybody is made to feel very welcome and it's a great place to meet new people and share experiences. Do have a look It's my second home!!

Lyn x

[Hidden]

Hi Lyn

Now I am confused whats the role of NRAS Health unlocked as opposed to NRAS web forum? Do they duplicate oneanother?

Cheers

Fiona xx

[Hidden in reply to Hidden]

Fiona,

The HealthUnlocked site is not designed to replace anything that NRAS already delivers but enhance what's offered.

In regard to sorting information, we hope that, with people using 'tags' on their questions and blogs (this identifies the key words that will be useful search terms) that members will be able to identify popular subjects and find more easily the subjects relevant to them.

It's pretty much impossible to deliver something that everybody likes and does exactly what they need so some people may prefer the forum (especially where they're used to it) and some people may prefer this site. Some people may like to dip into both.

So long as people post helpful, informative, supportive and accurate content whichever site they go to, the bank of knowledge will build up and you should be able to support others, and get something from the group.

This isn't like the VHS and Beta Max divide! We are obviously biased about how good our system is because we designed it from scratch but we recognise that the forum is helpful for people.

We hope that people will always see the value of the blogs here and that they will keep on reviewing their hospital visits so that we can build up a good amount of information for the benefit of everyone.

It's also worth bearing in mind that there are additional modules that we hope to make available to our online communities in the near future. We hope that all these avenues of support and information will help people have a greater sense of control over their own wellbeing as well as background that will help inform the time they spend with doctors and other healthcare professionals.

I hope that goes some way to answering your question!

Katie

HealthUnlocked

[Hidden in reply to Hidden]

Katie

Thankyou.

How is health Unlocked funded if it is free to us?

Fiona

[Hidden in reply to Hidden]

Fiona,

Rather than me cutting and pasting loads of words, best that you go to our FAQs. They'll tell you all that you need to know: nras.healthunlocked.com/faq

And if you want to see one of our bespoke paid-for projects, do visit beatonline.info/ . I think it's pretty impressive.

Thanks,

Katie

[Hidden in reply to Hidden]

I am not particularly looking to research health unlocked I just wanted to have a short cut answer re the organisations constititution. ie private company, charity etc. Most of my time is spent is spent reseaching RA. Im going to try and understand the NRAS blogg site a bit better I think as I somehow complately missed that. Thank you lyn for pointing out.

[Hidden]

PS SYLVI dont forget to post your new hair colour !!!!!!!

[ismael]

thanks to all really i've found the real team...

[Hidden]

Hi ismael

Good to hear from you.

Hope that the peer support on this site might help a bit. I know that we are all different ie disease activity levels - some of us have help and support whilst others of us have none. I think it is extra hard having RA and also having had to deal with all the additional issues of seeking asylum in another country.. I am really sorry to hear that you are in so much pain.

I dont know what the services are like in Malta ? I hope that you can find some more help in addition to advice on the NRAS site etc.

Keep posting and stay connected there is a RA community out there

fiona xxx

[Gina_K]

Hi Sparkle,

I'm trying to catch up & am a bit late here. All the above is very sound especially pacing etc. If you want to do something at night you really need rest in afternoon! i have to say my top top tip is .... Having a laugh!!! taa daa.

In the early days when I was really bad with RA, and finding it hard to accept etc etc, my consultant asked me, ' Did I ever have a laugh'? Well, that has stuck with me, at the time I was annoyed what did I have to laugh about? my life had been taken away! However, as I was laid up, I got a box set of 'Frasier' a series I had never watched before & I laughed & laughed, it really helped as much as a pain killer! Now I always try to watch fummy programmes or see a comedien live. Truly, if you can laugh sometimes it really helps! I hope this does'nt sound mad, as a lot of previous comments very valuable also.. x Gina.

[Hidden]

hi sparkel how are you today?, nice the site is enjoyablew and inclusive isnt it

alison

[Hidden]

Hi Alison

How are you! I am ok but vv achey and stiff all over. waiting for Anti tnf appointment on april 28th. face like a melon from steroids!!!!

I hope that u are hanging on in there> Think u have it really tough at the minute with only one income and facing sick pay cuts- and having uncontrolled disease.... being alone at night etc..... At least u can blogg and hopefully tweet a bit we need that don u think xxxxx