Help and advice those in the know!

cinderella21

Hi,

I am new to all of this so please bear with me! I was diagnosed with RA just over 5 years ago about a week before my 30th birthday - not the best present i've ever had!! lol!

I think i've spent the last 5 years not wanting to give in to the arthritis and now feel it's possibly all caught up with me. The last month or so I have had lots of pain (more than usual) and been sleeping even less than normal! I feel very down :sad: I feel ridiculously tired and have taken time off work this week as everything felt so much harder. I'm not really sure what I want help with?!?! I have spoken to my nurse about taking methotrexate, but as is the norm have to wait for an appt. Has anyone found this has helped with pain more than other meds?

Does anyone have any other coping techniques? I think I feel so frustrated at not being able to things.

Has anyone ever had any periods of time where they have felt able to do things they could before they got RA or been pain free? (Maybe this is just a total long shot on my part, but i'm ever hopeful!!).

Thanks

tjc123

Hi

I have Ra & a bit like you I was diagnosed on my 40th birthday.It took me a long time to listen to my body when it tells me its time to rest,but now a year on I feel im getting worse & I have no choice but to take time off work when I cant " do no more"& I am lucky my boss understands.

This probably is no help to you but please rest when your body tells you too...you dont want to burn youself out.
Take Care
tjc

elnafinn

Hi Cinderella

Welcome to the forum. I am sorry that you have had to join us but we are a friendly, caring group of peeps who do understand what it is like.

I have OA so a different "arthur" from you. We do have our good, bad and inbetween times and the theory is to pace oneself which is much easier said than done. :roll: When we have a good day, we may go a bit beserk and try to do too much and then suffer more the next day perhaps. It is a learning curve. Once on meds that suit you, can make all the difference.

I am sure you will get many replies, sorry I cannot help so much but others will be able to do so.

I find heated microwaveable, wheatbags are of great comfort to wrap around knees, shoulder, neck etc. "Icing" can help with inflammation and bring down swelling of joints.

Try not to get too stressed out, that does not help, again easier said than done. Many people call in here to rant about their "arthur" and even just doing that does help. Others reply and that makes you feel a little better because a problem shared is a problem halved and at least you are with others who do understand.

Chin up,

Elna x

skezier

Hi Cinderella,

Welcome to the forums though sorry you have had to find them.

I have pa and oa and the pa is like the ra but not quite the same so I might be wrong here but I think we all hope the medics can get control of it via the modifiers and hopefully we can get spells when its not really there beyond what ever it has already done to us.

The mtx is a good drug if it suits you and can bring it to heel, It sort of sounds like you are having a flare and the mtx with luck will stop that as well for you. In the mean time rest is about the only thing you can do and if you need to sleep than sleep. Its got the fatigue thing as a sting and that makes you so tired and so heavy a if your legs are full of concrete.

I don't personally think it's unrealistic to hope for a bit of normality in between the flares i really don't.

Flower the thing all these do best is take it out of you mentally as well as physically and that's accompanied by the frustration as well. We all understand it and coping kinda varies to person to person.

Not sure I do cope as such sometimes and that's sadly normal as well I am afraid.

I know for me knowing the enemy within helps and the more you understand it the easier it is to take what it does to me.... There are some every good things up in the about arthritis bit at the top of the page and that could help you to help understand whats happening to you, how ever unfair.

I hope the rumo nurse will get back to you soon and be honest I know with the ones I have got it does honestly get easier with a bit of help from the medic. hang in there flower and nice to meet you. Cris x

tillytop

Hello Cinderella and welcome from me too!

I am just off to cook tea so will reply properly tomorrow but just wanted to say please don't feel alone with this. What you are feeling is perfectly understandable and most of us have been there and you will get lots of good advice and support from the peeps on the forum.

Thinking of you lots.

Tilly (another RA'er)xxx

madwestie

Cinderella,
I have RA and like you do not want to give in to it so i prefer to think of it as working a way round it.
I can't do some of the things i used to but most thing i just do a bit/lot slower or find a different way of doing so i don't have to give up.
I walk with a stick now but it means i can still get about.
I think it is about working out what you can do at the time one day you may feel more up to doing something than another.
I find my hot water bottle is the best for helping me with the Pain.
Methotrexate will help with the inflamation which then helps with the pain but it is not a pain killer. It can take a while to work. Fatigue is one of the more annoying aspects of RA and resting when you can/need to does help.
I hope you get you appointment through soon.

Elna, it did make me laugh thinking of you with icing on your knees.... and as to how you get it on your neck.. :eek: i used to try and keep it on my cakes...


Tracey

elnafinn

madwestie wrote:

Elna, it did make me laugh thinking of you with icing on your knees.... and as to how you get it on your neck.. :eek: i used to try and keep it on my cakes...Tracey

8) You made me laugh too, Tracey!
Thanks for that. I've never been that good at icing cakes, it gets everywhere, but on the cake ........

Luv
Elna x

julie47

Hi cinderella

Welcome from me too... When i was diagnosed at the age of 25 i too found it hard to accept. But eventually rather than fight arthur you have to work with it. Rest when you need to and don't try to do too much.
It is hard I know cause the brain says go but the body says no.
I hope that when you get on the right meds you start to feel much better.
Take care
Juliepf x

ratface

Hi Cinderella,

Sorry you are finding it difficult at the moment.

Day to day life is hard to cope with when arthur comes along. You've done well fighting him for the past 5 years, so don't feel at all guilty now. I was 40 (ish) when I was first diagnosed (now 60 (ish) so you can work that one out. I was about 3 years into RA when I first started methotrexate and it did help me along with other meds. (Naproxyn, Diclofenac and various others along the way). I worked full time until 18 months before I retired when I was made redundant (the contract I was on had finished and I didn't fancy having a long drive to another one). We are all different with meds. some work for some and not for others. Sore joints: I have found cold works for me (not hot), a wet towel draped around my ankles and wrists (or a bag of frozen peas) when they hurt, especially at bed time, helps me whereas others say hot. Like everything RA related, it's a case of trial and error.
Regards, Ratface

ironic

Hi Cinderella,
It does sound as if you are having a flare at the moment and as others have said you need to rest as much as possible. I have cut down my work hours and find I am able to cope better. I do hope you get your appointment soon. Have you been going to have checkups? I don’t know what meds you are on but anti-inflammatory tables are usually given at least.
You could try a tens machine maybe the cheaper version to see if it helps while you are waiting for your appointment. Hot wax treatments for hands are very popular on here.
Yes I think we do have better days than others and can get ‘on with things’ but as you have probably found out by now it is a balancing act, you have to pace yourself.
Please keep in touch and let us know how you get on.
Lv, Ix

tillytop

Hello again!

I am so sorry you are struggling so much at the moment, physically and mentally and, as you say, it does sound as if it’s all caught up with you. And when you are in pain and struggling with fatigue everything is so much more difficult to cope with isn’t it?

But you have taken a really positive step by starting to move things forward on the methotrexate front. I don’t know what meds you have been taken up until now but, from your post, it seems that they are not helping much. As the other peeps have said, mtx is not in itself a painkiller but, by hopefully tackling the underlying inflammation, the pain can be reduced. Like all RA meds it works brilliantly for some, ok-ish for some and for others not at all so it really is a case of trying it out to see how it works for you. I fall into the middle category – it certainly helps, but not enough without other meds alongside. As you may already be aware, it can take up to 3 months to see the full benefit of mtx so you have to be patient.

In my experience frustration is a big part of RA and, almost 16 years down the line, I am beginning to get better at managing my frustration and working within whatever my limitations are at any one time. And as my wonderful husband is always reminding mebeing frustrated uses up precious energy!

In terms of being pain free – well you just never know. The challenge with RA is always to try to find the right combination of meds to keep the inflammation and pain as well under control as possible. I was lucky in that I had 5 wonderful, virtually RA free years when I was taking Infliximab and a couple of good years taking Humira. Other than that it has been up and down with better times and not so good times.

As for doing things you could do before – I guess that depends what you did before! If you used to go marathon running, then probably not, but as to more “ordinary” things you may have to adapt the way you do them and tackle them more slowly, but they can often still be done. I love gardening for example and whilst I can’t do heavy digging, lifting etc for the moment, I can “waft around” with my trowel and hand fork, tending to pots and my raised vegetable garden.

Really hope you get your appt soon and can get going on the mtx.

Thinking of you – and please do post anytime – we are here to listen and support you as much as we can.

Love Tilly xxx