Paul Wharton

[Hoggy59]

Hi my name is Paul I was diagnosed with RA at the start of this year 2015. Would appreciate any advice on flare up, not coping very well with them. And why do People think it's a nothing illness! You have to keep smiling though even though it's hard.

[Metal-legs]

You may need to speak to your rheumy team for a drug assessment if you keep getting flare ups. If one joint is very swollen, a steroid injection may help you, again ask your rheumy team about this? Are you taking any anti-inflammatories? This may help you cope better, your gp should be able to advise.

People can be very judgemental about this illness, you can't see pain so people presume we are fine. Yes it's very difficult to keep smiling and be positive but you will get plenty of help and support on this forum.

Hope you find a way forward soon.

[Hoggy59]

Thank you, very much appreciated, off to see my Consultant next week so will have a good chat then.

[grannyjan]

Hi Paul, sorry to hear of your diagnosis. The beginning is the worst unfortunately until your meds get sorted, but as metal legs said injections can help if a particular joint is really bad. Hope you get sorted soon. Like you said have to keep smiling 😊

GJ x

[Hoggy59 in reply to grannyjan]

Thanks for your comments GJ ☺

[Keryn]

I find i flare more if ive been extremly busy the previous day. I have really bad wrists and wear compresion braces to help witj swelling. In the mornings i go from bed to the shower the hot water helps. Also found when its really cold an electric blanket on the bed helps. Also look into some natural meds to help your body cope better fish oil, glucosomine and tumeric.

[Hoggy59 in reply to Keryn]

Thanks for your comments Keryn my wife is going to try me on some natural meds.

[determined56]

Hi Paul my consultant has told me the chronic fatigue is part & parcelof RA. I try to re-occupy myself with painting /sketching (even when hands scream with pain).listen to audio books & my music. Growing cucumbers/toms indoors .....there are days just can't function so go with flo rest if you can.

[Hoggy59 in reply to determined56]

Thanks for your comments, I hope you have a good harvest off toms.☺

[Ali_H]

Hi Hoggy and welcome. For me knowing when to push the boat out and get things done and when to just coast along seems to be the key for keeping flare activity low. I also know when I haven't slept well and when I've eaten unhealthily for too long (I'm no saint on the food front but keeping on the healthier side definitely helps me).

As for the nothing illness I think it's the term arthritis which is misleading and people think only of the joint side of things. And if I think back my understanding was just as limited before developing RA so I try not get frustrated but, if appropriate, let others know a bit more.

All the best

Ali

[Hoggy59 in reply to Ali_H]

Thank you Ali, I am having to learn how to coast at work lucky I have two good apprentices who help me. ☺

[Patsy-57]

Hi,

Sorry you joined our club. I find a steroid injection in the bottom helped all my problems or it did when first diagnosed. Just remember we are all here for you in good times or bad.

Patsy

[Hoggy59 in reply to Patsy-57]

Thanks Patsy-57, I have had a few steroid injections and they really help me. Then told could not have any more because they can't tell if the mtx working. ☺

[oldtimer]

Welcome and sorry to hear you have to join this bunch- remember most people only post when they have problems!

I find if I tell people I have an auto-immune disease it doesn't invite the same response of "My auntie had a touch of that and cured it with cider vinegar/copper bracelet/etc".

People are then either interested (and you can explain) or their eyes slide away (and you keep quiet).

I think the worst time is at the beginning when you are having to adjust to having a long term illness and your medication hasn't been sorted out.

[Hoggy59 in reply to oldtimer]

Thanks oldtimer for your words like you say it takes time and once my meds are sorted should be able to cope. ☺

[Jeanabelle60]

Hello Paul and welcome. The early days of RD can be very, very difficult indeed as you don't know really what is in front of you and its all very new, confusing and really hard to cope with.

All I can say is make your life as comfortable as you can to suit YOU. You are right about people not knowing just how debilitating this disease can be and completely life changing in many cases.

You don't mention anything about your treatment. From my own experience I have found that my Rheumy Nurse is a god send.....if you have one cultivate your relationship with her/him......they are your connection to a wealth of information and advice. My Consultant once told me that she knows as much about RD as he does and he was 100% right.

I hope that things work out well for you and that you find the treatment that is best for you soon. This can sometimes happen early in your treatment but unfortunatly as there are no two cases the exact same this can sometimes take longer than we or our medical team would like.......but try to keep positive, I know that a big ask sometimes.

All the best and keep in touch with the site. Over my nearly 5 years since diagnoisis I have gleened a wealth of information from this site.

[Hoggy59 in reply to Jeanabelle60]

Thanks for your comments Jeanabelle, just getting to know my Rheumy nurse and started to open up a little just all seems strange.l have started on mtx been on it for two months will have to wait until it kicks in. ☺

[Jeanabelle60 in reply to Hoggy59]

It can take a while for meds to work. There are many people who are able to get on with their lives on MTX and never have to go anything else....one of my best friends is one of them. However there are some who aren't so lucky and it can take a while to find the right one for you. You are on the right road now Paul but I can appreciate that men do find it that wee bit harder to talk about themselves. Stick with the MTX and i really hope it is the one for you, all the best Paul. Jean XX

[Hoggy59 in reply to Jeanabelle60]

Thank you Jean x

[Tinatop78]

Hi Paul

I was diagnosed roughly the same time. Been there for longer but to ages to get a diagnosis! Be kind to yourself, rest, eat well, tell your nearest and dearest. I have just found all these forums really really helpful and never had a funny/bad response yet! Do little thing that make you happy (for me a good session of live at the apollo works wonders haha!). My GP and ra nurse now are great, be honest with them, hard to do at first but I'm finding it easier.

[Victoria-NRAS Partner Moderator NRAS]

Hi Paul

You may find this article helpful. It was written by a well-respected rheumatology specialist nurse:

susanoliver.com/patients13.htm

Kind regards

Victoria

(NRAS)

[Hoggy59 in reply to Victoria-NRAS]

Thanks for the link Victoria ☺

[Rachel43]

Hi Paul. Sorry you've had to join us. I'm Rachel (44) & have been diagnosed for a long 14 years. Name a drug I've probably tried it. It's hard when your having a 'flare up'. Like the drugs to help us each person finds there own thing to help them. Heat, cold, rest, meditation. It's a bit of trial & error. Hopefully you'll find what works for you.

And what to say about people's ignorance? I still haven't found a way & if I had a pound for every time someone says "you don't look ill" I'd be a millionaire. But 14 years in I've still resisted the temptation to smack them one! 2 reasons for this; 1 I don't believe in violence & 2 I can't actually get my hand to make a fist 😂

Good luck on your journey.

[Hoggy59 in reply to Rachel43]

Thank you Rachel x

[medieval-ali]

Hi Paul

Welcome to the 'club'. This is an illness you can't describe or show people hence why 'they' don't understand, even the most understanding people still don't understand how it makes you feel. I love Oldtimers response, I think I may use that one in future!

You will learn to cope, it becomes the norm I'm afraid and you learn to smile through it, just make sure you're not still smiling through it when you see the RA team, tell them exactly how you feel and if you need to keep a diary to show them, they like evidence.

Flare ups, people cope differently, rest if you need to, sometimes you just don't get a choice, I try to keep moving and it seems to help, I treat myself like a Landrover, 'use it or loose it' even if it is tiny movements do try to keep from freezing up. Some people use hot or cold compresses I have never found them helpful but you may.

If you get to a point you really are not coping, call the RA team they will help you. It does get better, in the beginning I was dreadful but now the drugs are controlling it, at the moment things are good.

We are always here to if you need a moan or to share good news.

Good luck

Alison.

[Hoggy59 in reply to medieval-ali]

Thank you Alison.☺

[steve55]

hoggy 59 definately not. i saw how my struggled to get out out of bed in the mornings.....i felt helpless because there was nothing i could do.

most people tend to look forward to summer she dreaded it, thats when her RA was at its worse. but with the help of her medication ( sulphasalazine and moblic ) the symptoms were kept under control, so much so the specialist felt she would be able to come off of her meds.

shes been very lucky but i wouldnt want to be the person in her earshot who said RA was a soft illness