I started having trouble a few months back with random joint pain now after seeing a couple of doctors and having blood tests done they think I have RA.
Whilst waiting to see the rheumatologist (which thank god is tomorrow) i have got rapidly worse.
I am up crying in the night in pain I can only describe as crippling torture.
My hands feel like a bus has run over them, one has frozen solid and I couldn't even put my 2 year olds socks and shoes on.
So tired and getting depressed by it all now.
Will the pain ever stop?
Will the rheumatoligist be able to help me?
I was a healthy young at heart 35 year old with a 4 and 2 year old to look after and my world has just crashed to a holt.
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Cat111
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Hi Cat, Sorry to hear you are feeling so rough but am glad you are seeing the rheumatologist tomorrow. It is very difficult to get your head round being diagnosed with this disease (if you have, indeed, got RD, just bear in mind there are lots of types of arthritis and it's not always straightforward to diagnose.) However, there is lots they can do. Expect to have blood tests tomorrow, maybe X-rays and referral for a scan. They may give you a steroid jab or start you on oral steroids. If you are diagnosed with RD, the national protocol, as I understand it, is that you should be started on disease modifying drugs within 12 weeks. You could ask the rheumy about that. The drugs are much better these days and lots of people do well on them. It is very scary and depressing but there is a lot of support out there so use it. You certainly aren't alone.
Hello and welcome to the boat, so to speak. Sorry to hear that you are in so much pain at the moment, my advise would be any pain killers that they throw at you at the moment take it with open arms. Once they have you on the right medication for you then it will abate, let me assure you.
You mention that you have young children, I know it's hard but try and rest as much as you can as the fatigue is one thing that gets to us all big time. Any offers of help from family and friends treat as a gift.
Good Luck with your appointment tomorrow and take care. xx
And Cocodamol but it's just not touching the pain now.
Hoping to get something tomorrow so I can at least sleep.
Hello Cat, So sorry that you are struggling - it must be very hard with two young children. My symptoms were very similar to yours as you describe them and I was diagnosed and put straight onto Methotrexate this time three years ago. Within a few months the pain had subdued a great deal and three years later, although I'm presently off all drugs and my disease seems to have morphed into another, I am still free of the type of pain you describe and I credit the drugs I've taken for this.
So things will most probably improve hugely once you are diagnosed and start treatment. This is how things are for the majority of people with RD. But do bear in mind that this site tends to be full of those of us who have ongoing problems i.e the minority. The majority who find that their RA is successfully managed by drugs tend to get on with their lives - which is very understandable and hopefully will be the case for you too.
Good luck for tomorrow. You may want to take some photos of swollen joints with you and stay off anti-inflammatories if you are presently taking any just so that things are clear for the rheumatologist to see as sometimes we have a good day just when we need to show ourselves at our worst.
Yes I have taken some photos of my wrists and hand.
That's really good Cat - I do hope you get a good assessment and I'm sure things will improve a lot once you have a diagnosis and are started on treatment. Tx
So sorry you've been having such problems. It must be doubly difficult when you have two small children.
As others have said, there are very effective treatments available nowadays. The problem is that it takes time for them to kick in. However, hopefully you'll be given a steroid injection to tide you over meantime.
Fatigue can be difficult to cope with. Try to spell yourself, it's very tempting to rush around on a good day, but you will probably suffer the next day!
The pain will stop, so don't despair. Everything with this disease takes ages, but you'll get there. I well remember being where you are now (although older) and thinking incredibly gloomy thoughts about the future. Pain and sleepless nights aren't good. But it's fine now. I'm well controlled with the meds, and have been for years now and live a pretty normal life. So chances are that you'll be too. Forums like these tend to focus on the problems, but for many of us it's actually ok.
The appointment tomorrow will be over in a flash, so write yourself a list today so you don't forget what's important to you. So details of your symptoms - when it first started, which joints, and how it affects you eg not sleeping etc - but also things you want to know. Useful things are to find out whether they have a helpline or specialist nurse you can call inbetween appointments, and also details of the tests they're doing so you can read up on things afterwards. Also, try not to get your hopes up too high, as you may not get a firm diagnosis straight away or even long term treatment. There are a variety of similar diseases, and the drugs are quite strong so the docs tend to want to be sure before they prescribe. But don't come away without a prescription for painrelief! And if it's not offered, do ask about getting a steroid injection - they can work wonders in the short term. Good luck.
Hi Cat111, sorry to hear you are having tough time just now. Good that you are seeing rheumatologist tomorrow. I was diagnosed in June this year and started on mtx, now the pain side of the disease seems fairly well under control and I am hopefully learning to manage the fatigue a bit better. The people on this forum are such a great wealth of information and so supportive it's amazing. I Would have been lost without it. As you said it's reassuring to know you are not alone. All the best with your appointment.
Take heart & hold onto the thought that how you feel just now is probably the worst you'll feel. Once you start treatment, given a little time because unfortunately things tend to take time in our world, excepting maybe one or two wonders like steroids, you'll be on the road to feeling more like you were but as long as you're realistic & don't expect for it all to just disappear you'll not go far wrong. It didn't come quickly so equally it won't be controlled quickly but you will have relief from your pain.
I hope all goes well tomorrow. If possible it's a good idea to have someone accompany you, especially being your first introduction to the Rheumatology world, new words, maybe a protocol suggestion, drug names etc. It's all so much to take in, especially when you're in pain, so having someone to go through what was discussed after the consultation will help you. If you wish, take notes, don't rely on your Rheumy's written instructions if any are offered. It helps to write in terms you'll understand if anything specific is advised I find.
If there's anything you're unsure of, want some advice through experience of any meds mentioned, whatever, ask away. There are so many of us on all the different treatments somebody will be able to help.
Good luck for tomorrow Cat111, I hope it's a positive experience.
Thank you my mother inlaw is coming with me who is also under a rhuematologist so I think she will understand it all more than me and help explain after.
This site has been of great comfort today and I think I'll be using it a lot.
Hi and welcome. I can't add to all the good advice above apart from when you get a diagnosis or even just for questions NRAS are great, their helpline is amazing and they give you loads of tips , support and advice and there's loads of info on Www.nras.org.uk
So hope in a way it's not RA for you, but good luck for tomorrow and if you get the chance let us know what happens? Xx A
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