Got a call today

[saffron07]

I've been experiencing a lot if pain as stated before in lower back, left hip and knee area; about two weeks ago I could not move off my bedroom flood it was so bad, still have stiffness around hip, some swelling around that area, lots of twinge pain and weakness and so tired all the time.

I have been pacing myself for the children and not always showing the extent of the pain. That said I went to see GP whom contacted hospital who called me this morning telling me to come in on Saturday for MRI this is great but obviously worrying as I've had traces of blood and proteane in urine.

I am scared as RA has hit me hard in hands and feet, only been on meds two months now but changes are slow. Trying not to worry but it's so difficult as I've mostly been fit but lately put weight on which is not helping I know, for now I will try to be brave and do the Christmas thing, first time I haven't wanted to.

Bar Humbug

[Hidden]

Bar humbug to bar humbug! I'm a great believer in not trying too hard to be stoical with friends and family.being stoical is not the same as showing courage I feel - being courageous is telling people when you are in pain and need help and I think that should include the children as it encourages them to be considerate and think of others - even at a young age. Please don't feel you must struggle on being stoical - hopefully you will be like me and find that after a few more months the drugs you are on will work well but if not at least you are in good hands and getting MRI scans and tests. I really hope the pain lessens for you very soon and you manage to have a good Christmas. Hugs, Tilda x

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Ps don't beat yourself up for putting on weight. You can always lose it again after Christmas. X

[saffron07 in reply to Hidden]

Thank you it's very reassuring to read your words, I'm up again at nearly 2 in the morning; find sleeping difficult so go down stairs gir cup of tea, in my special chair, it lifts, supports, reclines, etc recommend to all. Think I will have a mince pie and listen to the rain playing its song

Have a the best Christmas you can too.

[sparkymac in reply to saffron07]

great believer in the mince pie treatment. Hurts a bit getting the foil container off the pie, but the anticipation helps, and after the first bite, the pleasure offsets the pain a tiny bit. Forget about the weight till after Christmas, try mince pies in twos. good luck, and have a happy Christmas.

[saffron07 in reply to sparkymac]

4.40 did to much yesterday as my is over for Christmas ; thank you your words gave me a good laugh you have a great Chrisas too x

[Hidden]

Have you tried Amitriptyline yet? I took one last night to try and get on top of aching feet and hands and it does work and also contains sedative so helps me sleep better. Up with pup at 5.30am but this time I went back to sleep. Mind you I struggled to get off to sleep so didn't manage that until past midnight so if you do take it try to take one earlier than I did! Tilda x

[saffron07 in reply to Hidden]

How strange GP did offer me this but I refused as I wasn't sure if I roils be able to function next day but I'm reconsidering to be honest, in lots of pain and very stiff again and work are being crapp. X

[Hidden]

Dear Saffron I HAVE this too which medication are you taking?, I have just made an appointment with an urologist via the patient choose and book system.. your gp should refer you on.. my rhuem has been monitoring it has been occuring for alomst one year mentioned at two rheum appointments now.. Gp dismissed my concerns 6 months ago so asked Rhem to remention in letter to him and mre.. I ask for patient copies.

[saffron07 in reply to Hidden]

I'm on mtx 15ml once weekly, hydrochlorquine 200ml daily, folic 5ml weekly, cocos amol as required daily, various for hypertension and atvorstatin. I'm seeing rh nurse again February and a specialist Jan 17 . I will make sure I get copies. Thank you x

[Hidden in reply to saffron07]

I take exactly the same medication as you do Saffron. Its working pretty well for me but the main improvement happened when I switched from oral MTX to having it by injection. This was supposed to mean I could tolerate it better and so move up a dose or two but as it happens I don't seem to need the higher dose at the moment.

Re stress from work - that's probably what is making your RA much worse. You need to find some way of calming yourself and putting things into perspective. Meditation, tai chi, gentle aerobic exercise such as walking a bit more each day or something you can do with the children too and get the endorphins going which in turn makes you feel much better or so I find. Tilda xxxx

[Hidden]

Dear Saffron I HAVE also messaged you with another concern..at your age most things are highly treatable...

[tamnwill]

Sorry to hear you're so rough, this blooming weather really doesn't help. I got recurrent UTI's (urin infections) two years ago that didn't cause the burning sensation when passing urine but when they did a dip stick test I was off the scale! It caused me to have chronic tiredness and because my body was fighting an infection, my RA symptoms were awful. In the end I had a specific weird infection that had to be treated in hospital with introvenious drugs once every three days for 2 weeks and that worked. Try not to put on too brave a face, I understand it for the kids sake but I did his for years and my son is 10 now and has a much better understanding of my illness without being frightened and is generally more considerate all round now I've stopped 'smiling in agony'. Try and find things you can do with them that don't involve too much movement like board games and being interested in what they like to watch ( William likes David Attenbrough ( so it's easy - not like it would be trying to enjoy Sponge bob square pants!!!) I guess it depends how old your kids are really. Weight? schmate! It's the least of your problems flower, tackle that one when you're able, everyone understands you know :o) Drink lots of water too, it's good for diluting all the drugs we take and therefore may make it kinder on your system. Thank goodness they are taking you seriously and you're having the MRI. I find I can deal with whatever life throws at me fairly well......it's the unknown that scares the pants off me. Rest well. Gentle hugs, Tam x

[saffron07 in reply to tamnwill]

I am scared its true, you start to think about the unknowns. I know my wife cares but at the same time she must be getting fed up. Work are being crappy about pay as its a new company I started with in social care sector, you would think they would be more understanding and sympathetic, not so. My girls are 5 & 7 & my son is 2 so full on, I love them so much and never imagined I would have them at this age well only 49 now. I worry for them and the impact it's having. Feeling bit sorry myself at 5 in the morning and up again. All will be awake in next couple of hours it's this time I find both hard and some what relaxing.

Have a good Christmas x