Hope all had a pain free Christmas: I wish I could say... - NRAS

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Hope all had a pain free Christmas

saffron07 profile image
15 Replies

I wish I could say the same but it's been one of worst ever. At present I in so much pain, flare up around wrists, toes and feet. To make it worse my hip

Left side keeps buckling in pain, my back, jaw and shoulders are in agony. I've taken cocodamol, diazapams still the pain is breaking through.

I'm getting sick and tired of the mtx & hydroxy it's as though since taking these the flare ups have intensified with new symptoms or old ones which had been dormant . Had MRI Saturday due to see a consultant 14/1/13 and the rheumatologist in February but I want to stop taking them, going to GP tomorrow for better pain relief, very scared of this bloody thing. Think I will call the support number see what they can suggest. x

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saffron07
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15 Replies

Oh dear I'm so sorry you are in so much pain. I think it's a good idea to get to your GP asap and ask for something more effective - have you tried Naproxen and Tramadol yet? Many people on here take these for their RA. I really hope you get some relief soon - take care. Tilda

saffron07 profile image
saffron07 in reply to

Thank you I hope so to, I will ask about these tomorrow

sylvi profile image
sylvi

Saffron, like tilda has said have you tried other drugs. I feel for you i really do,at the moment i have got up early because my hands and knees are hurting rather a bit.I had a day like this on saturday and it gets you down doesn't it. I hope you soon get some help, love sylvi.xx

saffron07 profile image
saffron07 in reply tosylvi

Hi thank you yesterday was very bad day

For me pain wise, felt very down. I was up most of the night managed to get a few hours early hours. I just don't feel DMards are helping so I'm really thinking about stopping them

Josie2 profile image
Josie2

Hi Saffron

I really feel for you. Ive been on 2 different dmards, mtx and leflunomide, and at present on nothing.

Mtx i couldnt tollerate and was wiped off my feet for about 4 days after taking it, leflunomide just didnt work for me at all, i tried it for about 5 months but flaring worse and in more joints even when i upped the dose.

Had steroid injection late December and this has got me through xmas. Got appointment with rheumy nurse 3rd Jan so will see what they try me on next!!

I had said a few times i didnt think they were working but was told to plod on as they take time to get into your system. After hobbling in last time in total agony with me knee and other joints he actually agreed with me! Did say he thought it could be bit of fibro as well but seen as though the steroid has helped loads i dont think it is this.

I do really hope you get sorted as dmards are not right for everyone but dont come off them without speaking to your rheumy.

Take care and keep us posted.

Jo

Xxxxxx

saffron07 profile image
saffron07 in reply toJosie2

Thank you for your advice I feel like I'm losing the plot at times it's been so bad. I will call Rhuemy nurse today see if I can get any advice about stopping them

helixhelix profile image
helixhelix

Please, please don't stop the DMARDS until you've seen your rheumy. They can take 12 weeks or more to really make a difference to your symptoms, and generally rheumy's like you to try for 6 months before thinking of changing. So it may just be that it needs a little longer before you'll feel the benefits. If these ones don't work for you, there are others to try so do try to keep hopeful that there will be something to help you. ANd great that you've had an MRI as there could well be something else going on in back and hips that needs other solutions, since RA tends to go for smaller joints first. Polly

saffron07 profile image
saffron07 in reply tohelixhelix

Thank you for your advice I think your right about back and hip it's just unfortunate it's all happening at once

lynn-bel profile image
lynn-bel

Hi. I havent been on for aaaaaaaaaaaages!! So as the NY appproaches I think I will make more of an effort to stay intouch.

I have been okay until Boxing Day evening when a horrible cold hit me along with bad pain in neck, upper arms and shoulders, as if I'd been weightlifting (which I havent!) Cold has eased but hubby is now in bed with a real stinker along with a temperature so I am nursie right now. Pain is still there as before, isnt it weird how pain hits in different places for no obvious reason? Hubby worries about me downstairs on my own so havent told him the pain I have or he wouldnt let me help him.

I take Naproxen as well as paracetemol which does help, but have to take it for a couple of days for it to kick in! I do think this cold damp weather exacerbates things. And of course, the Xmas stress doesnt help.

Was gutted to find out I can't take Lemsip due to high blood pressure!!! Been taking it for my cold as it really does the trick, soooo, back to the drawing board. Luckily I dont get many colds but with taking MTX I do hve to be careful and I cant fight it off like I used to.

So, HAPPY NEW YEAR TO YOU ALL and let's hope for warmer, drier and sunnier weather and less pain.

Lynn xxx

saffron07 profile image
saffron07 in reply tolynn-bel

Yes it's do difficult sometimes to know what the hell is going on with my body I know I know my emotional responses are all tied in but I feel do bad at present no temp

But as well as normal RA symptoms I feel cold and shivery and want to wee a lot, my wife at work today the girls at grandmas and I'm at home with youngest boy. Big old dad not really giving much out at present which really does hurt to so yes I hope new year brings better things.

Will

lynn-bel profile image
lynn-bel

Hi

Havent exercised as much as normal the last 2 weeks, due to Xmas preparations, weather and then this lingering cold so I think that makes me ache more - I belong to a walking group and always feel better after a long walk in the countryside. Also have a Wii FitPlus that I've been neglecting lately, so will be back on course later this week and should feel fitter. I get cold sweats at night quite often - not sure if it's RA or the old menopause hanging on, but honest it should be gone by now!!!

Have a good year!

Lynn

saffron07 profile image
saffron07 in reply tolynn-bel

I to up to about 8 months ago trained I've noticed my pain has increased ten fold since stopping so has the stiffness, this is not me I know that I've allowed myself to become this way, so New Year, no more crappy gym but walking and yoga.

saffron so sorry to hear that nothing seems to be working at the minute. Agree with the others regarding not too come off the dmards until the rheummy says so. But i also feel for you there is nothing so awful as putting up with the side effects of the dmards with no obvious improvement. I feel the same i have been on metx, lefl and now sulpha - the first two i went off because of side effects but the only thing that gives me real relief is the steroids. I am seeing the consultant soon as well and hope he will put me back on metx as well but like you i am thoroughly sick of the whole thing. I hope the Gp can give you better pain relief in the interim. I find naproxen and cocodamol takes the edge of it.

saffron07 profile image
saffron07 in reply to

I managed to see GP who has put me on tramadol and amyltriptaline already feel some benefits, yes I will stay on DMards until meeting with consultant in February. Thank you and Happy New Year

in reply tosaffron07

aww good saffron hope you get some relief

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