Hello everyone, just joined today and as a newbie, I'm finding just starting to write this a little strange. I don't talk much about my condition to anyone outside of family but for some reason I was drawn to come here and get involved in your home on the web. I was diagnosed with RA in 2012 after suffering for around a year and a half before then, thinking it was just my age that was my problem. Your getting on a bit at 56 so its expected to feel a bit of joint pain. That was what I told myself and my GP never agreed with me but never disagreed either as he prescribed me pain killers and sent me on my way. It wasn't until I said enough was enough and politely asked for a second opinion. He made an appointment for me to be assessed at my local hospital and apologised by saying that he was just a GP.
I went along to my Rheumatology department and after all the you know what, they told me it was Rheumatoid Arthritis and that was when my journey began.
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O2Bpain3
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That's the best thing about here I think. I didn't want to keep telling my aches and pains to my family and my friends made it very obvious they weren't interested! So when I found here it was great as the people here have been there, done it and got the T shirt!
And very supportive . So I hope you get the same support, I'm sure you will X
I think you will find this site of huge benefit to you.
Like you I had RA for approx 18 mths before being diagnosed,putting it down to the general aches and pains of the aging process and not wanting to make a fuss,then I got to the point that I had to stop pretending nothing was wrong and so I too ended up at a rheumatologist......and the story goes from there.
I have not been on this forum long but there are folks on here with such a wealth of experience and advice to give,who do not judge you or make you feel small. Everyone is in the same situation and has either gone through or is going through what you are now.
I think you will find loads on here with similar stories to yours.
So stay and be involved and I am sure you won't be disappointed.
Thank you for all the welcomes and nice comments and so quick. The understanding of what an individual is going through with any illness in my opinion is pretty much impossible, unless you have or are suffering the same symptoms yourself.
So as much as i sometimes get angry inside when how i'm feeling just gets fobbed off, i try and understand that they cant possibly know how i'm feeling anyway. You get to know when talk of your arthritis is a conversation stopper and immediate subject changer.
I once tried to put it to a mate in this way....
You meet an old friend and their driving this fabulous top of the range sports car. They tell you about how marvelous the car is to drive and the buzz they get when admirers look their way. No matter how much they bum their car up, you will never know that feeling unless they offer that you take it for a test drive for a while yourself.
Now would'nt it be a game changer if you could help someone to understand how you feel by offering them the same option. If there was such a thing as an RA bad day or flare up wrist band invented then you could offer that person to strap this on your wrist and take my RA for a test drive.
Problem with that is, they may never ask you again. They would most probably avoid you at every turn, and you may have lost a friend.
I think I would trade it for a completely pain-free day. The problem would be what day should I use it on; my open studio? my God grand baby's Christening? my Birthday? Would I want to wander around galleries, liberated from the wheelchair, or would I just lie in the garden, enjoying a blissful pain-free rest.
Hello, and welcome. To respond to your point, there is a simulation suit that people can try on to get a bit of the experience of our lives. Here's a YouTube link, or Google Abbott arthritis suit... I just wish we could borrow them from the library and insist unthinking friends try it out!
Restriction affects one's life, but this woman isn't suffering any of the pain of severe RA. From that point of view, I don't think the video is helpful. But you always are, Helix ! J
Could small nails be embedded within perhaps? But then again who, in their right minds, would agree to trying the suit if pain was included? Maybe a flashing sign to add to the garment saying "add in pain yourself by imagining a lining for this suit made of red hot coals and glass shards"?!
in reply to
Oh and I should add a warm welcome to you from me too!
Welcome, I hope you find this forum as helpful as I have done. Whether you just want to let off steam, ask a question, browse to keep informed or get warm and caring support, this is the place! Jora
Hi and welcome. I have been on this site for 18 months now and find it brill for asking questions, or just letting off steam. Advice given on here, by many people, has been invaluable. ☺x
Welcome and sorry you have had to find us. We are a great bunch of people and we have a wicked sense of humour which we need when we get ra as it doesn't always come on its own. So feel free to ask anything you feel relevant to your condition.xxxxxx
Thanks Sylvi, had my first flare 6 weeks ago after 4 years of coping quite well. Right out of blue while at work one nightshift, both of my hands started to ache real bad. Came home went to bed and after just a few hours of sleep I woke to extreme throbbing pain. So bad that I thought my fingers were going to explode. The pain in my fingers and wrists and the heat was something I had never experienced before. Got up and went to the freezer to get a bag of frozen veg (don't have an ice pack) to try and cool my hands down. The ice felt like fire and gave a scolding feeling. The after effects of the flare has left swelling and pain which still hanging around my hands, fingers, knees and small bones in the soles of my feet are sore again. It was pains in my feet was my original problem from the start, not my hands.
My GP signed me off work and that was 6 weeks ago. He prescribed me a two week course of Nifedipine because he thought my circulation was poor, as my fingertips on my left hand were purple. Now, one minute my body is boiling hot and the next I'm shivering. The meds never done anything to relieve the pain in any way. I am taking all my daily meds of ( Diclofenac 25mg x2, Paracetamol 500mg x 8, Pregabalin 50mg x2, Folic Acid 5mg x1 and of course my once a week Methotrexate 2.5mg x 8 on every Sunday ) on time every time but since that flare I have felt different. Its kinda knocked me back a long way as I was coping ok but now the aches and pains are back and I feel crap.
Now I find myself worrying about absolutely everything and its getting me down. My employer asked very kindly if I would allow their occupational health people access to my medical records and I agreed. They were on the phone to me within 2 days, but the doctor I spoke to was ok and recommended to my employer that I should refrain from work until after I see my consultant at the hospital. My appointment is set for 1st of June.
My GP tried to get my appointment brought forward and said he would call me if possible. He hasn't called so I guess the surgery was too busy, which I fully understand.
Sorry to rabble on, just a bit lost at the moment. I was always a fit and healthy guy, confident, happy go lucky. Married with 3 kids and 3 step kids, all grown up now and 7 gorgeous grandkids. As I say just lost a bit. But ill get it back.
It hits us all like that,i never thought that my 72yr old hubby would be the one taking care of 60yr old me. We all have our periods when we get knocked back,mine has been anaemia which i was diagnosed on Friday and i wondered why i felt so ill and i put it to fibro and cfs so you see how wrong i was. You'll get there don't worry,you might have to make some adjustments to your life but you'll get there.xxxx
Welcome O2Bpain3. This forum is an amazing place. People here KNOW from the inside what you are going through. Whereas friends & family who do not have arthritis simply do not, no matter how kind and helpful they try to be. Here you will not be judged, just support and sometimes tips that can make your life better.
Since I joined I have felt this forum is like a second virtual home full of people in similar situations.
Hiya O2Bpain3 & welcome. Great username!! I can really relate to you, my road to diagnosis started in 2008. I had pain & stiffness in my feet which I put down to staining the panels of our shed before construction & sitting on my haunches a lot, my feet in an unnatural position. I was fortunate in that when I went to my GP as after few weeks I also had inflammation which didn't let up whatever I did to attempt to ease them, she recognised it was RD & a couple of weeks later the diagnostic clinic confirmed her suspicions.
I've also responded well to meds, they've changed over time but my feet remain the joints where disease activity persists. What I'm getting round to is we can be fortunate & avoid flares but the position you're in now needs attention. I differ from you, as well as the norm MTX, SSZ, NSAID, pain relief etc I also remain on a low maintenance dose of steroids, not ideal but despite a stressful year has prevented flaring. Ordinarily I'd suggest you ask if you could have a steroid injection or a short course of oral steroids but, & I know this may not feel the case, as it is not too long until you see your Rheumy neither option may be ideal. You need to present yourself as you are now at your appointment in order for your Rheumy to assess you. One thing I would do though is take photos of your hands (or have your partner do it for you rather than putting yourself in more pain). Also any other abnormal inflammation, anything so you have a record of how bad you are just now.
Meantime, you could try contacting your Rheumy nurse if you have a helpline & appeal to be seen earlier & keep on at your GP Surgery, they may be busy, that's the nature of primary care but this is an extreme situation & those who pipe up are heard eventually. You could also try heat rather than cold on your joints, your hands may react better, I don't benefit from cold compresses on my joints, not everyone does. I also keep Pernaton gel close at hand, more for my OA hand & neck/shoulder pain but it might be worth trying it & using it as I do, like a hand cream & apply regularly. It's not contraindicated with any of our meds so it's fine to apply it as often as is needed. It doesn't take the pain totally away but does take a reasonable amount of sickening pain down. It goes without saying but take it easy, don't push yourself, no good trying to fight a flare you'll never win!
I hope whenever you see your Rheumy you have a positive appointment & do keep in touch, if we can help in any other way we will.
I would suggest right away to ask them about Humera. On this site and everyone that I personally know that has ra and is taking it has had very good results. I have been using it since it came out over 14 years ago and it's almost like my ra is in remission. I do have an occasional Flair but is nothing to deabilitating I just know on those days I have to take it a little more easy than my regular days.
Lots of newbies in the last few days. Lots of people find it hard to talk about the RA outside of family (and sometimes even with family). This is a great place to get support and empathy and if you ever need to talk to someone in person we are always here on the helpline:
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