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Date: 01.03.2011
From: kylee

Subject: help

hi all its now 2 in the morning and im on the sofa in complete agony nothing is shifting my pain i have a flare in both knees right sholder and elbow im a trembling wreck and dnt realy no what my choices are just woundered if any 1 had ever rang an ambulance when you are in sooooo much pain i have had to get my 2 yr old daughter to come down stairs and sleep on the sofa s she has a bad cough and keeps waking and im unable to get up the stairs. surly the hospital would do some thing wish i had a barrel of gas and air right now or even better morphine. aanwaay just wanted to no if any 1 had actualy got to the point of ringing an ambulance or would i be wasing there time and theyd refuse to do anything
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Date: 01.03.2011
From: cookie

Subject: Re: help

Hi kylee sorry hon have just read your post you sound like yourat crisis point nobody should have to put up with that sort of pain. Hope you get it sorted today just for the record dont put up with it again. Call your gp out of hours they can advise if an ambulance is needed make sure you have the number available so you know where to get it if your in the same situation. As a nurse i would think its appropriate for someone to call an ambulance if you were in such distress if you had no joy with the oncall gp. Hope your ok honey xxxxx
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Date: 01.03.2011
From: kylee

Subject: Re: help

hi cookie thankyou 4 your post i rang my rhummy first thing this morning after having no sleep and being in tears all night. and they said they wld phone me when they had spoke to my rhummy doctor to see if its convenient to draw fluid today i am soooooo annoyed as i cant get throuh another night of agony.
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Date: 01.03.2011
From: Paula

Subject: Re: help

I think you can have a steroid injection into your knees as well, ask when the nurse rings you back. Also ask about a steroid injection into your bottom to help with the pain else where. I know you can have a steroid infusion if things are really bad.

Hope you get something sorted today.
Paula
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Date: 01.03.2011
From: kylee

Subject: Re: help

hi paula i no i can have steriod injectons i ususaly end up having 3 - 4 a yr but its the biggest relief when the fluid is tken off the joint the pain istantly decreases im now thinking of phoning my gp to c if i can get somewhere through them. i understand im not the only patient that they have but i dnt think they understand that when u r in sooooo much pain we need something doing asap i have over loaded on pain relief anti inflammatorys and still nothing. i cnt sleep because i cnt lie down i cnt get onto my bed or up the stairs feel like im hitting a brick wall
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Date: 01.03.2011
From: Marion

Subject: Re: help

Hi Kylee

Just read your post and I so feel for you, no one fully understands unless they have been there.

I had an acute flare over the new year and my husband ended up calling an ambulance for me as I was screaming with pain. If you are ever in doubt just call an ambulance, no one should have to tolerate that level of pain. I will be thinking of you, let us all know how you get on.

Marion
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Date: 01.03.2011
From: kylee

Subject: Re: help

hi thank you for your thoughts its now 3.10 and still no phone call. getting more and more annoyed they close at 5 so im guessing there not going to get in touch. did the ambulance crew help or did they not treat your pain. the reason im in have been in so much doubt bout calling for help when the pain is t6hat bd is because when i have been like it in the past i have managed to get myself to a and e were i have been refused treatment and sent home as they say its not an injury and therefore wnt treat it and suggest i take anti inflammatorys and pain relief my knee is like a football.
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Date: 01.03.2011
From: Fee

Subject: Re: help

Hi Kylee So sorry to hear about your pain. I too have the same at the moment Its agony isn't it? Luckily today I had my knee drained and a steroid injection the relief is amazing. I really could not have put up with the pain for much longer. I do hope you hear from the hospital soon kylee but if you haven't by 4pm I would get back on the phone and remind them. The nurses can easily forget as they are so busy. Dont be afraid to be keep calling. Any rhumy nurse will understand your suffering and be sympathetic. You will feel so much better once your knee has been drained and the steroid takes effect.Hang opn in there and give them another call!!
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Date: 01.03.2011
From: cookie

Subject: Re: help

Hi kylee the ambulance crew wont be able to treat you as they have very little at thier disposal. In my opinion extream pain is an emergency just because you have a chronic condition it should not deminish from the fact you are in agony. The ambulance crew would take you to a & e for treatment an on call gp could give you morphine but you have to think who would have your little one. Its so difficult but just keep ringing your rhemy dep xxx
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Date: 01.03.2011
From: davina

Subject: Re: help

hi i'm so sorry your in sooo much pain and i know how u feel and hope it gets sorted soon

fee when u had ur knee drained from which area was it, at top of knee or back

thanks
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Date: 01.03.2011
From: kylee

Subject: Re: help

hi just to let you all no didnt get anywhere with rhummy went to emergency doctors 2night who wanted to admit me to get joints sorted he phoned the hospital but they would not take me in as they said they have noone to take fluid off aand just to try again in the morning. so i am now bk at home stuck down stairs with perscription of morphacodine tablets which still hasnt reduced my pain.
my mum came from work to take me to emergency docs as i cnt drve with the pain im in and she was fuming nothing has been resolved so she has taken the day off 2moz to take me to the rhummy instead of dealing with it over the phone hopefully 2moz night i will be in my own bed and able 2 sleep. just 2night to get through aagain. god why is it so hard to be heard
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Date: 01.03.2011
From: cookie

Subject: Re: help

Oh kylee hon thats awful. Im off sick at the mo and have been since nov when our occ health nurse rang me she said the same how much she hears about important issues such as stroke etc but never anything about ra etc it just doesnt seem a priority. When mine first started 17 years ago i went from being a really fit gym x 3 per week walking about 20-30. Miles per week 27 year old nurse to being virtually imobile because i worked in the hospital i ONLY had to wait. A month to be seen by a rheumy instead of the 3 MONTHS IT TOOK FOR EVERYONE ELSE. ITS CRAP but dont let them allow this to drag on anymore. Tell them tomorrow youll stay on the phone till they give you a time to go in. Hope you get some rest honey xxxx
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Date: 01.03.2011
From: Lorraine

Subject: Re: help

So sorry to hear what you are going through i have had the same as you for the last 2 weeks sleeping in a chair downstairs , so much pain and just crying all the time going to the doctors was a joke he did nothing just stronger pain killers that didn't work. i have never felf so depressed in my life ! i hope you get sorted asap
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Date: 02.03.2011
From: kylee

Subject: Re: help

morning all just waiting 4 my mum to come round and give the hospital what for im considering reporting it all to pals if nothing gets done 2day thanfully the swelling is starting to die down in my knee how ever it hasnt in my sholder that seems to be getting worse probably coz im trying to draag my self round using my arms to pull me round the house i think its soooo perthetic how we are left in such a stateand it isnt the first or even second time i have been left in this situation. even if noone was at the hospital to drain my knee they could of still taken me in and treated me for the pain and waited till mornng for a doctor to arrive its dangerous to send somebody home when they have no mobility to care 4 them selfs. i have nearly gone over so many times trying to get to my kitchen
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Date: 02.03.2011
From: Maz

Subject: Re: help

I don't live over there but if you called the ambulance & went to hospital wouldn't they drain the fluid??
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Date: 02.03.2011
From: Fee

Subject: Re: help

Hi Davina

I had the fluid taken off the front of the knee just to the side. Its very uncomfortable but the the relief is almost instant. Its well worth it - just think of something nice to get you through it!! Good luck!
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Date: 02.03.2011
From: Fee

Subject: Re: help

Hi Kylee,

Thinking of you today. I do hope they sort you out. Best thing is to be admitted they will sort you out and what's more you will be made to rest which is really important as from your messages you seem to have been trying to do everything yourself. Its so important to rest- easy to say when you have a family but take advantage of that whilst in hospital. Re the drawing of the fluid. It is quite specialised procedure and not a lot of doctors like doing it which is why you probably didn't get it done last night.I have come across this many times. The best docs to do are the rhumy docs as they do it regularly. Good luck today Kylee and let us know how you get on.
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Date: 02.03.2011
From: kylee

Subject: Re: help

hi all managed to get in to day case unit today had fluid taken from right sholder and right knee then seriods injected into both joints what i relief my rhummy hs also perscribed 2 weeks of steriods and hi doese of sedative meds tonight to knock me out. he was going to admit me has tey were concerned about my right leg i have a purple\red rash down my leg also both feet are extreamly cold to touch and i have small red lumps on the bottom of my feet and all over my toes so i have had 4 sheets of blood forms drawn up. they are unsure whats going off not sure if they are going to find lupus in my bloods as i now have 4 symptoms of lupus. which meets the criteria for more investigation. the only reason i wasnt admitted is i have an eye test at 8.00 tomorrow regarding my vision in my right eye i seem to have what id call a fixed floater its a black circle in my vision that doesnt move and is there all the time so my rhummy wants to no the results of eye test 2moz wen i go so decided it was best to let me go home and get it sorted 2moz morning then i can let him no whats said if eyes ok he will see me in 7days time to investigate my feet ect ect.

god its such a relief to have the fluid off and steriods in and more pain relief to take b4 bed thankyou all so much 4 your support. xx
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Date: 02.03.2011
From: cookie

Subject: Re: help

Glad to hear your getting sorted honey. Fingers crossed xxxx
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Date: 02.03.2011
From: Fee

Subject: Re: help

Oh Kylee what a relief for you - bless! You will sleep well tonight no doubt ! Its always such a relief to get the fluid removed and the steroids will kick in fast and make you so much more comfortable. Good that you have at long last got the attention of your rhumy doc. They will look after you now. Sleep well..
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Date: 03.03.2011
From: Lucy

Subject: Re: help

Hey honey, hope you managed to get some sleep and relief last night x It sounds like the hospital have got their arse into gear finally! Lots of hugs and best wishes x
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Date: 03.03.2011
From: Paula

Subject: Re: help

Pleased to to see that at last you are having the care that you need. Hope you got a good nights sleep last night.

Take care and gentle hugs.

Paula
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Date: 03.03.2011
From: karen

Subject: Re: help

Have been reading your posts & Im so glad you are feeling better x
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Date: 03.03.2011
From: kylee

Subject: Re: help

hi all i had the best nights sleep iv had for a long long time the sedatives did the job just suffereing with a real baad dry mouth but anything is better than the pain i was in. my knee is much better not using wheel chair or crutches any more its a little sore still got an obvious limp but at least i can put my foot on the floore its amazing that is all they had to do was take a bit of fluid of the knee and sholder any i feel 90% better i told him to put a vavlve in my knee joint so i could just open it up when i needed it draining lol obviously the answer was no.
still feeling theay spced out dnt no if its because of the pain i have been battling for the last 4 days or the drugs i have been given maybe a bit of both but it is defenetly better not being in he state i was in many thanks for every bodys support
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Date: 04.03.2011
From: Marion

Subject: Re: help

Hi Kylee

So glad you finally got some help and treatment. Take care of yourself.

Marion
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