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Rank: Advanced Member  Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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I have chased up the OT and rheummy nurse and lung function test and finally got appts for all 3!The OT is next week because I am still off sick and am now at the stage where I cant move my arm without causing incredible pain in hand and up arm. My wrist is shiny and swollen and red hot, and there are times when I would happily just chop it off! I have increased painkillers yet again, but nothing appears to make any difference. Hot pack, cold pack, splint, no splint, nothing seems to give me any relief. I had to fill in a form today and couldnt write! I am so down with all the pain.
The lung function on 27th and rheummy nurse 3 june, followed by consultant on 6 june. Please let one of these appointments sort out my horrific pain, pleeease!!
Apart from everything i have already tried, is there any new tips for pain relief that have worked for the community? Your help would be gratefully recieved.
Hope you are all keeping well out there. petra xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Petra
Really sorry to hear you are in so much pain - but glad you've got some appointments. My daughter had to have a lung function test - but we haven't heard the result yet (she's 22 with RA).
For pain:
I take the maximum doses of Voltarol - 75mg long acting twice a day (anti-inflammatory)
Oramorph - which is a liquid version of morphine. This is good when desperate!
GPS done really like max does of Voltarol - but my consultant says nearly everyone who walks in the department is on the maximum dose!!
I went to the GPs in so much pain, and was so fed up (in the extreme) that he was happy to give me the morphine. I don't get side effects from it, although I wouldn't drive if I've just taken it. But it does give that sense of relief for a while, which I think we all need. I'd already tried co-codamol and tramodol - but they make me feel very sick and peculiar - so I don't use them any more.
If you have a stock of prednisolne (steriods) at home, you could ask the rheum nurse on the phone if it is ok to take them - and what dose. If you've not had them before then they'd want to see you first.
I have a very helpful GP - although he doesn't know much about RA and tells me to ask the hospital for those questions!! But he's good with writing out prescriptions for things I want! Even though he doesn't like me on some of the drugs! Although it means doing my own phone calls to the hospital nurses - he is then happy to do whatever they say.
I also find a warm bath helps - but did have to borrow a bath seat to be able to get in and out the bath! Now the treatment is working, I can manage without it... so there is light at the end of the dark tunnel.
I've been on a pain management course in the past - and a good technique is 'distraction' - it does help to some extent but can be hard to so. I watch a good film, visit the beach for an ice cream (even in winter), have a cup of tea with a friend. These don't solve the pain problem but they do give you some nice things to do and we all need things to look forward to.
I'm off to hydro therapy today - which is a group session from others who were on the pain mgt course - so we do have a laugh
Take care
Anne x
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Thanks Anne,
It is the worst the pain has ever been and i cant even move my right hand or arm without causing extreme pain. My GP is also good at prescribing, last week he put me on tramadol to take with the codeine, i dont have any anti inflammatory apart from brufen, which i buy myself. Maybe I could do with a stronger one?
I called GP today though and he has prescribed me a course of steroids to help pain, I am just waiting for my daughter to collect prescription for me. I havent got the energy today to get dressed. I hope this helps or I wont be back at work on monday!!!
Your words are very calming, I am reading a good book at the moment, and is distracting from thinking about how much pain i am in.
Hope you have a lovely day xxx petraxxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Petra Sorry to hear you are suffering so much at the moment, I m sure the steroids will really improve things for you I remember being in that position some while back before I was diagnosed. Just as a thought which might help a little, I m still having trouble getting the inflammation under control and have a lot of pain in my shoulders running down to my hands. To get some relief I bathe my arms, only up to my elbows in really warm water in the wash basin ( I do it the hottest I can ) and it does give my relief and feels like heaven in the process and don t really want to take them out. I am lucky I have a ledge above the sink and so I put a towel there and lay my head on it  As Anne has mentioned having a distraction does help, I have never watch so much tv in all my life  keep us posted, take care. Julia
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Petra,
So sorry to hear you are in so much pain but I'm glad you've managed to sort out some appointments.
I was going to suggest asking for a short course of steroids but then I read that your GP has now given you some, which should help a lot.
Take the maximum dose of painkillers and take them regularly, even if you think you don't need them, keep them topped up to keep on top of the pain.
Hope you can get some relief soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Petra
Pain is awful yes I know. The bath idea is great, I wish I had one, but we had ours taken
out couple years ago and replaced it with a walk in shower, so when you go away I love
having a bath, as long as hubby there to help me in and out.
I take tramadol when I am in lot of pain
Rose
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Thank you all,
I have now just had my first 40mg prednisilone so am waiting for relief. Hand arm and fingers so swollen its untrue.
Will keep you posted. Thanks for your kind support, its good to know that you all understand how bad this is.
Petra xxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Petra
Pleased that you have got some prednisilone and hope it settles thing a bit for you. Keep topped up with the painkillers even when you start to feel better. Take care Ceri xx
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Petra
Really glad to hear he has prescribed some steriods - they should really help over the next few days. They also give you a 'high' - so it should help with your mood too (it does when I'm on high doses - but wears off eventually!! - the high, I mean!). I take them in the mornings - otherwise I am too 'alert' to sleep!!
Lots of RA people have Declofenac (Voltarol) 75 mg Long acting/slow release - twice a day. That gives you 150 mg a day (which is the max dose) The long acting ones are better than the normal 3 x 50 mg. These can be prescribed and is a much higher dose than you can buy yourself. Some use Naproxen -I've had that in the past - and can't remember why I changed to the Voltorol now!!
I am really pleased for you that you also have a good GP - it really does make such a big difference. The steriods and if you need them, some voltarol - should get you through until your appointments.
I've been to hydrotherapy today and sat all afternoon with a very good friend drinking tea and chatting - very good therapy!! My son (18 years) just made a sweet and sour sauce for our pork chops & rice - so a nice easy tea! I just had to sit and give directions!
Take care
Anne xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Petra Pleased to hear that you have now got something to help relieve the pain and inflammation. You should notice a big difference from the prednisolone although you may well find it difficult to sleep. Do keep the pain meds topped up as this is the best way to stay on top of things. Distraction is also wonderful; for me, music through earphones cuts out the pain completely ... there again I've never been able to multi-task!! Bear in mind when you start to feel better from these temporary meds that now isn't the time to start spring cleaning, even though you will probably have loads of energy! These drugs are only treating the symptoms and not the disease itself so try to take things very easy until you see the consultant and are started on disease modifying drugs. Better days ahead Petra, Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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I love you all for being such great confidants and so helpful in my time of need. The past week has been worse than hell and I would have happily done something drastic if it had continued for much longer.
I appreciate all your help through this bad period. I have finally got some relief, baby steps but I can now actually move my hand and even clench my fist. I feel like a new woman with just that small change. The pain is now manageable and as long as I am careful it settles well. I am still keeping on top of the painkillers though, thanks for the tip.
Lyn, I did actually look at the ironing and thought I might give it a go, but you are right...I got hubby on the task to prevent me doing it tomorrow, bless him. I do need saving from myself at times.
I feel like normality is coming closer and I am very excited that I will be going back to work on monday...fingers crossed xxx
Thank to you all Petra xxxxxxxxxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Petra,
have just caught up with this post,
really pleased to hear you are improving and sounding more upbeat now.
hope as the days go on you feel able to return to work,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Petra
The pain is the worst imaginable, I know. I am so glad you have started on steroids now, they will definitely make you feel better. I agree with Lyn, you will feel like doing everything at once because steroids give you lots of energy but take good advice and don't overdo it. You will regret it. Just enjoy having less pain or no pain if you are lucky.
Good luck
Sheila X
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Thanks to you all again... I feel back to normal after 4 days of steroids, I am scared that it will come back when I stop them though. What is the chance of this happening realistically??  I finish the last dose tomorrow morning, going back to work on phased return from monday..such a gamble isnt it? Any answers you have would be really helpful!!! Love Pet xx
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