hi I am new to R A and have been reading about flair... - NRAS

NRAS
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hi I am new to R A and have been reading about flair ups I have got pain all the time with no break from it

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some days its my feet or shoulders everyday its my hands the tiredness is very hard to deal with I now only sleep a few hours a night how do you adjust your life sorry to moan

11 Replies
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Hi Lucindajune and welcome. I'm so sorry things are so awful for you at present with no break from pain. For me this was the very worst stage and after diagnosis and treatment were underway everything improved greatly. Hopefully it will be the same for you too but try to be really kind to yourself and remember that most of us go into shock when we learn we have RA so it's tough for everyone at the beginning. Moan here whenever you like. Tilda x

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thanks for your kind words it is a strange illness that's for sure I had never herd of r a until I was told I have it ,so its great to find such good support someone told me to try honey and vinegar any one tried it ?

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Tillytop

Hello and welcome from me too.

I am so sorry you are struggling so much. As Tilda says, the early days of RA can be so difficult but things can improve dramatically once you get going on the meds and they get properly into your system. I have had RA for 18 years now and can honestly say that, although I have my ups and downs, things joint-wise have rarely been as bad as they were in the beginning when it was just constant. As for the honey and vinegar - many of us - mysefl included - have tried the so called "natural" remedies for RA but I have never found they did anything to help. Some can actually be harmful, particularly if used alongside the other RA meds. You don't say if you have been given any meds yet or seen a rheumatologist? But sometimes the clinic will give you a steroid injection to try to tide you over until the meds get into your system. The steroid injections don't work for everyone and, in my experience, they last for varying amounts of time, but I have found they can be a huge help when things are really difficult.

You may already know this but there is lots of useful info about RA and the meds used to manage it on the NRAS website and they have a free helpline you can ring for advice too.

nras.org.uk/

Thinking of you and really hoping that things get better for you soon.

Tillyx

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Monnie1

Hi I feel the same as you feels like it's never going to end if it's not one thing it's another hoping like you it'll get better. Hope it works out for you xx

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thanks you just feel so helpless a cold or flu you can get over this is like you say never ending I am going to try new medication next week but have mixed feeling a bout strong drugs I have never smoked or drank and taken very few drugs in my life and feel the damage from these drugs for r a scary

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julie_warwick
julie_warwick
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the drugs are scary , took me ages to take the MTX the 1st time , I kept looking at them and going out of the room again in a cold sweat , you hear so many horror stories , but what choice do we have , damaged joints and disability or drugs , hmm

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Tillytop

Hello again - and hello Monnie1 too.

I really do feel for you because I think many (if not all) of us on this forum will have had similar feelings about the drugs at the beginning and will understand just how frightening the thought of these drugs is. But taking these meds is so important to help to prevent the permanent joint damage that can be caused by unmanaged RA. After 18 years with RA - and having taken many different meds over that period, I consider myself so lucky to have only relatively minimal joint damage (hands, wrists and feet) and I dread to think how things would be for me now if I hadn't taken them. I know of others who have chosen not to take the meds and who have regretted it bitterly when it was too late to reverse the damage and I would hate anyone else to be in that position.

I really hope that, if you do decide to start this med next week, it works well for you and helps you to start feeling better.

Thinking of you,

Tillyx

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helixhelix

Can I echo what Tilly says, I was so scared of starting the drugs. But by that time I could hardly get out of bed and I was also really scared that I'd never be able to walk again. Anyway, I started the drugs and improved more than I thought possible. Now I can do most things I want with a bit of care, and I've got used to the drugs and don't really have many side effects. At first I hardly wanted to look at them but If you tried to take them away from me now I'd fight you for them....

Your life will be a bit different with RA, but it should be ok. Mine is. Polly

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julie_warwick

no magic answers as I am at the same stage as you by the sound of it . just to let you know you are not on your own , it's horrible and I am finding it hard too , lets hope for relief and the right treatment soon , it's good to have a moan , don't feel bad , we're all in the same boat x

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sandraw21

I think you just have to wait and see what happens as they sort out what drugs work best for you. Tell them if things are not helping, or making things worse. Some of these drugs have side effects, the most common being stomach problems, but there is usually a way round with them.

Things will settle down, I promise. And all too soon you will find out what flare-ups are all about. Not a nice thing though.

As for tiredness, it is quite common, and a lot of people have to have a rest in the afternoon for a couple of hours to recharge. And when you think about it your body has a lot to cope with, fighting the arthritis so needs to rest. If you have to go into hospital, in the rheumatology unit, they make you rest every afternoon whether you want to or not ! Hope you start to feel better soon

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thank for the uplifting words what can happen for people to end up in hospital?

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