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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, I am feeling very sorry for myself. My hip pain is much worse, so much that I cant move in bed at all, or its sheer agony. The only way I can get any sleep is to lie flat and try not to move. When I sit down pain goes from my bum right down my legs. The swelling in ankles and feet is much worse. My tongue is full of ulcers, the sides of my mouth is sore, I am feeling very down..... My appointment with the nurse is 13th Sept, I so much hope something can be done  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Oh Barbara! You poor thing. I would keep ringing for a cancelled appointment to see if you can get in earlier. Good luck.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
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Hi Barbara
Sorry to hear that you are feeling down. I can certainly sympathise with regard to the ulcers as I am really suffering with ulcers on my tongue at the moment.
I hope that things improve for you soon.
Take care Debs xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Barb - you just can't go on like this any longer and need a consultant appointment. Have you considered going down to clinic and refusing to budge until you are seen? I did this twice at my old hospital. It's embarrasing but necessary. So sorry you are having such a bad time. Hugs xxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Barbara,
That is so long to wait another 13 days. I really sympathise with you.
Look this is only an idea but when I was suffering from mouth ulcers I phoned my dentist and asked him what the best over the counter medicine was I could take for mouth ulcers, and he said just use warm water and salt and honestly after a couple of days it had worked.
Take care
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Barbara,
Sorry your in so much pain and suffering with horrible mouth ulcers! I can sympathise with you on both counts.. Really hope they sort things out for you, good luck with your appt.
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Ring the GP for a home visit and a stab of steroids.
I would say rest up but cant do much else when Im like that. Get some pain relief going too- Oramorph is good for breakthrough pain.
Much love
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Barbara,
sorry to hear how much you are suffering,
i hope your appointment comes round quickly for you,
in the meantime i think a visit to the GP might help you along.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Barbara
I am so sorry to read how you are suffering at the moment. I can't add anything more to what has already been said except please don't suffer too long. We British never make a fuss and we are our own enemies.
I hope you get something sorted very soon.
Take care
Jackie
xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thank you all for the replies. I am completely exhausted. I shall be in bed by nine. I have the boys still tomorrow, its my final day this week. We certainly do need to complain more. I feel theres no point in getting gp appointment, unless I can see one of the two senior doctors, they all say they cant help me, as they wont prescribe anything without the consultants say so. Jenni, I have heard of oromorph, but all I ever get when I complain of pain is " it will get better", its now been two years on the same meds and I feel worse than I did when originally diagnosed I'll just wait for the nurse appointment on 13 September, it will soon come round now, she doesnt normally do much, just gets me to fill in how much pain I am in etc then just says "well, youre on the right meds" if I ask about better pain relief she says that I'm already on high strength meds (tramadol and paracetemol) and this has never changed in two years either. Wish me luck!!  BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Do you think it might be an idea to ring the NRAS helpline and ask them for some advice before you go? They usually have very good pointers as to how you can get through to the medics that you can't carry on like this any longer. I think it's well worth a try. Also, have you got anyone who can go with you for some moral support? Take carexxxx
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Barbra,
I was also told I am on the strongest painkillers, however, after a stint in hospital, I am now on ZOMORPH 2, twice a day and Oramorph for breakthru pain. Also taking Co-C0damol every 6 hours. So you do have room for improvement.
Metaphorically STAMP your feet!!! BE HEARD!!!!!
Throw a tantrum if you have to.
Or ring PALS at your hospital, they will get things moving as they are there for the patient!!!
Hope some of this helps
Sending hugs
Trace xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Trace
Im on the same for pain relief. it really works. I also take the co-codamols regularly.
Drink apple juice and eat dried apricots to erm... keep things moving the other end!
Movicol if needed...
There are NO medals for martyrdom on here- take the damn pills...(my new motto)
Jenni xxhow to be a velvet bulldoser
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