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Date: 18.02.2013
From: Emm

Subject: Ceased up today

Hi all, just need a moan, I have woke up soooooo stiff. It's taking me ages to get moving.
I have recently been getting lower back pain and it's very severe, but also my usual joints are stiff too.
I tried to get a GP appointment today but they are full.
I am going to ask for some Tramadol as I don't have any strong painkillers and a friend with RA says they help her.
I hate this disease and am almost crying this morning.
Things to do and no way I can get on and do them yet.
Thanks for listening. X
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Date: 18.02.2013
From: rhona

Subject: Re: Ceased up today

Hi Emm, Sorry to hear that you are in so much pain today, i can sympathise as this time last year i could hardly move. I can't remember what medication that your on but it sounds like you need a review. Do you have a rheumy nurse that you could call and they might see you and even give you a steroid jab. I remember you had a post on not so long ago about the amount of steroids you can have well i found a note where i have put the dates etc down and i had 12 last year.

I do hope you can get some relief soon as it is a horrible disease but try and stay positive as they have new drugs coming out all the time and the better weather will be here soon. Don't worry too much about not being able to do things your health comes first and people will just have to understand just look after yourself and rest all you can. Sending you a gentle hug.

Take care xx
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Date: 18.02.2013
From: Tara

Subject: Re: Ceased up today

Hi emm
I really feel for u today you really need to rest up as best you can I know it so frustrating when you have things to do but hopefully things will be better tomorrow :-)
Try and see your doc for a review he or she will be only too happy to help and get you some stronger painkillers
Take care hun
Tara
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Date: 18.02.2013
From: Emm

Subject: Re: Ceased up today

Thanks for replies girls,
I rang the specialist Rheumy nurse only to be greeted by a message that said the advisery service has been suspended!
Ring the consultants secretary if a prescription is required.
Rang her at the hospital to be greeted by another taped message that said leave your name and number and I will get back to you!
So what do you do in your hour of need?
I am disappointed there is no specialist nurse advisory service any more because the secretaries are not going to be able to help are they.
Is this another cutback? It's shocking. Sometimes I find also that when you have RA the GP won't take any action on medication.
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Date: 18.02.2013
From: Emm

Subject: Re: Ceased up today

Forgot to ask,
Can you get a steroid injeqwction that makes the whole 'skeleton' feel better or are they localised to one joint.
Feel like I need a 'central' one to make the whole of me get going.
Love to all x
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Date: 18.02.2013
From: rhona

Subject: Re: Ceased up today

Yes Emm you can. Think they are called systemic injections and i have had them often to help all over.

Sometimes i just call the rheumatology clinic and one of the nurses there can usually arrange the injection. They have a clinic on every day there so you can always speak to someone. When i call the day ward where they do the infusions etc you usually have to leave a message on machine.

Is it just a small hospital that you go to Emm? you would think there would be someone there to help at all times.

Good luck xx
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Date: 18.02.2013
From: Emm

Subject: Re: Ceased up today

Oh thats good to hear, but really getting in to the hospital is such a bind here.
Can you remember when I had a knee problem it took me about 4 weeks to get seen.
It's now five fifty in the evening and I haven't had a call back from the secretary.
She probably works part time and is not there every day of the week.
Yes, I attend a small hospital. The service is getting worse too. As I said earlier the specialist advice by the Rheumy nurse has been suspended.
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Date: 19.02.2013
From: Emm

Subject: Re: Ceased up today

Still had no phone call from Rheumy' secretary.
Got GP appointment today at 5 with a 'locum', can tell that will be a lot of help! Not
I have this experience every time I have a flare up, can never get in touch with anyone who can really help!!!!!
Frustrated and in agony!
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Date: 19.02.2013
From: rhona

Subject: Re: Ceased up today

That's not good Emm, Perhaps your doctor could call the hospital and ask for an urgent appointment for you. I had to get mine to do that last year. I would phone and leave another message on their answering machine, sometimes i have to do that.
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Date: 19.02.2013
From: Emm

Subject: Re: Ceased up today

Hi Rhona and everyone.
Just back from my 'locum' gp appointment.
I discussed strong painkillers and got Tramadol, then I randomly asked if you could get a steroid injection to make 'the whole body feel better' and he said you could and if I waited in waiting area for a while he would do me one. WOW I thought. So that was done in the buttock. Had to wait 5 mins in waiting area then come home.
So here I am, looking forward to feeling dramatically better tomorrow.
I now wish he was at my surgery all the time.
Fingers crossed it works.
I do worry about all this medication, but what else can we do?
Quality of life is important too!
I will post tomorrow or the day after to report back.
Thanks for your support. It really helps to know you are all there. X
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Date: 19.02.2013
From: rhona

Subject: Re: Ceased up today

That's good news Emm. I usually find that the locum doctors are better. We sometimes have an irish doctor as a locum and i really like her but she's not there that often.

Try and rest as much as possible for the next 24 hours as they say it works better if you do and i think its 48hrs if it's into a joint.

I hope you feel better soon, let us know how you get on. xx
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Date: 20.02.2013
From: Emm

Subject: Re: Ceased up today

Hello again, Feeling a lot better today especially from lunchtime onwards.
Joints feel a lot looser and tingling pain in my muscles less painful.
I took my first Tramadol 25mg after lunch. They seem to make me very thirsty with a dry mouth. I don't feel drowsy. So that's good. I am only going to take these on really bad days. But I'll have them in if needed.
It is good to feel a bit more human today, hope it all feels even better tomorrow.
Thanks for caring. Lots of love to everyone. X
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Date: 20.02.2013
From: rhona

Subject: Re: Ceased up today

That's good news Emm, I hope it lasts a while for you. Take care xx
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Date: 21.02.2013
From: marlene

Subject: Re: Ceased up today

Well Emm good old Tramadol I would be lost without mine. I have days that I cant cope without them.Glad you have a good pain med.
Glad you feel better. x
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Date: 21.02.2013
From: Emm

Subject: Re: Ceased up today

Hi Marlene, I was wondering if Tramadol is addictive. I am only going to take them on very bad days.
Is that what you do? Have you been taking them for a long time? Be interested to know.
I have only had paracetemol until now.
regards x
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Date: 22.02.2013
From: marlene

Subject: Re: Ceased up today

Emm, they do say they can be addictive. I have been taking them for years and I am only allowed a certain amount each month so I guess you will be monitored by your gp. I would say as long as you only take them when you need them you will be fine.I haven't had any problems with addiction.I can take eight a day and the most I have ever taken in a day is four. I find that is all I need you can take this along side your other painkillers when you are having a real bad day. I also take co-dydramol.
I do have a yearly blood test to check liver and kidney function, I don't know if your gp will do this.
I do hope they help you and don't be worried about taking them your gp will be keeping a close watch on you.
Take care and have a good day X
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Date: 22.02.2013
From: Emm

Subject: Re: Ceased up today

Thanks Marlene.
I will be only having them on bad days. Plus at the moment I have just had the injeqction and that helps anyway.
Lot's of love, keep well x
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Date: 22.02.2013
From: willis

Subject: Re: Ceased up today

Hi Emm
just thought i'd jump in and tell you that when i see hospital doc he previously gave me steroid jag in bum inter muscular it is, helps big time so it's really good to hear the locum did that for you my docs fret at handing out paracetamol :) hope your feeling better last as long as possible and if it doesnt' scream and shout till they see you at the hospital again.
xxx
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Date: 22.02.2013
From: Emm

Subject: Re: Ceased up today

Thanks Willis. It is very hard to get to see my Rheumatolagist, we had a specialist Rheumy nurse and you could ring for advice, or ask to be pushed in the clinic or she could prescribe and post them out to me. Sadly as I said earlier, when I rang on Monday a taped message said the advisary service has been suspended.
No other information was given. So it's not easy here. For once I was lucky to see a good locum. My regular GP's are not so forgiving at treating me.
Wishing you well. X
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Date: 22.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Just wanted to tell you that for the last 3 day's I have been the same as you.
It's one particular place in the spine it's feel's like it is broken and when to go to move it is really excruciating.
Then the rest of my joint's have started being painful as well and the only relief I can get is just to sit and rest not able to do anything else anyway.
I am on methrodrexate down to 15 mg from 25mg but know this is not the reason as it was only changed this week am also on arcoxia 60 mg and a bio- logic called Golimumab and if I went to the doc anything he would give me would give me I would just be sick anyway so can't do much but contact the rhumy nurse and see what she say's oh I am so fed up with this disease but what can we do but struggle on.
Sorry for the long post and hope you are feeling a bit better Deborah x
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Date: 22.02.2013
From: Emm

Subject: Re: Ceased up today

Deborah, I am so sorry to hear you are in so much pain. It surely is a horrible disease, and don't you think that the meds are not that effective.
I can't have bio's and have been on Methotrexate for a lot of years . Also prednisolone 4 mg daily, but the last couple of years nothing seems to work I took 10mg of methatrexate for years and last year Specialist put it up to15mg. But It is not making any difference whatsoever.
So I just have to get Steroid injections at my worst times as there seems to be nothing else for me.
Good luck with it all, maybe an injection would help you for a while too.
Life just seems to consist of these painful cycles and seeking treatment, ticking over for a while and then Bang its back again with a vengence.
WOW I have had a good moan this week.....
Lots of love x
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Date: 23.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Yes this is a horrible disease and yes I do believe that all the treatment's that are available are not as effective as the medical profession would have us believe. I think that they don't really know what to do with us for the best.

Sorry to hear that nothing is helping you even if they could only get something that could take this bad pain away.
Have they tried you on a higher dose of methrodrexate? It might help you a bit.
When I was on 25mg of methrodrexate it did help for a long time then of course I was taking that many flare's they decided to start me on a bio- logic which definately did help for a while but now it's not.

Got so bad this evening I phoned the out of hour's doctor and guess what? All he could prescribe me was co-codamol and a few other's which I can't take due to making me sick and that's me on anti-sickness tab's as well so he said just a flare up and to rest which is exactly what I have been doing all week. So that wasn't much help.

So back to the rhumy nurse on Monday and just have to enjure this all weekend ah well good job I hadn't anything planned not that I do because you can't really with these disease's because as you know only to well just getting on with everyday life can be challenging enough.

So have a good weekend and I will try and read another book and rest. Enjoyed the chat sorry for moaning on but at least the two of us got a good moan today all the best Deborah x
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Date: 23.02.2013
From: Emm

Subject: Re: Ceased up today

Oh Deborah, I know it is relentless. I have got a bit relief with that injection and the Tramadol, which I am not taking the prescribed dose. Just as needed. Maybe you could try them, I think they are the best painkiller I have tried so far.
I managed a visit to the Metro Centre today with my sister and neice and her little girl aged 4. My sister and I watched Grace while her mum did her messages. So we were'nt rushed just browsed and kept having a sit down and a cuppa. Grace was very good. Helen drove too, so It was quite managable for me.
I hope you get some help on Monday. Keep cheerful if possible. Lots of love x
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Date: 23.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Glad to hear that you have gotton some relief and it's great that you were able to go out today it's nice just to get out of the house for a while. And it is good you didn't have to drive.

I have tried tramadol before but they make me so sick even one so can't try those but I am sure they will get my medication sorted on Monday so maybe will get started something sooner.

Hope so wouldn't like to have to stand this all the time but it can only get better.

Glad to have somewhere like this site to find people like you that you can talk to as no one else know's what this is like to live with these disease's.

Enjoy the rest of the weekend Emm and thank you for the chat Deborah x
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Date: 23.02.2013
From: Emm

Subject: Re: Ceased up today

Thankyou too.
I know family and friends must find it hard to understand the pain and fatigue that we have. I know I would if I didn't have it.
I now think of my regular 'chatterers' on here as friends and find myself wondering what they all look like!
I am so glad I found the forum. X
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Date: 24.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Yes couldn't agree more family and friend's don't understand about these disease's.
Also know what you mean about regular chatter's I have an imaginary face for everyone isn't that funny.
My back is still really painful have to shuffle from room to room as I can't take any strong pain killer's so just have to put up with it although sometime's it is hard this is six day's now and still no let up.
Anyhoo glad I found this forum to imagine what this would be like if you had no-one to talk to you would crack up.
Thank's Emm for listening hope you are well today Deborah.
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Date: 24.02.2013
From: Emm

Subject: Re: Ceased up today

Hi again, Sooooo sad to hear that it's so severe for you, but it's almost tomorrow and you see the nurse!
It is very hard when things are at there worst.
Don't you think that a lot of us are suffering badly at present. Nothing seems to work very well.
I will think of you tomorrow and hope you get something to help you.
Lots of love x
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Date: 28.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
What a week! And thank you for thinking of me and yes I do think we are all suffering quite a lot at the moment I thought it might be the cold weather but think it's the change from winter to spring and as our weather change's so much that does not help us.
Phoned the rhumy nurse who thought that it could not be anything to do with pa as pa does not affect the back and thought I might have a cracked spine so she wanted me to be seen by a doctor so went to the casualty and the doc there who was very good did xray's etc and has come to the conclusion that I have a virtabrae or a disc which through being damaged by my arthritis has slanted inward's which is touching nerve's in the spine so he said he would contact my consultant and organise to get my drug's reviewed so sent home with painkiller's and anti sickness drug's which have helped so now just have to wait. And must add the doctor and nurse's were really brilliant with me really lovely people and was seen really quickly.

Hope they sort something out soon as am running out of drug's but will see my doc later this week and get more but would not like to be on this much for a long period.

So am just resting can't do much else anyway and am watching what way I move etc kind of thought this was too long for a flare up but a least I can sit ok it's just when you move. But bet everyone on here has been through similar if not worse so know I am not alone.

How are you today Emm hope you are feeling better. How has the stiffness been?
I do hope it has eased for you thinking of you too take care of yourself lot's of love to you too Deborah.
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Date: 28.02.2013
From: Emm

Subject: Re: Ceased up today

Hi Deborah, been watching for your post. Having a coffee break so thought I'd pop in on the site.
It's a shame that damage has been done to your spine. But pleased you are able to take the pain relief and get a little respite.
I have been feeling a little sickly this week and was wondering if it's the Tramadol, although I am only taking 1 a day. I have some Lanzerprozale in so may take 1 on a morning.
Sometimes I wonder if it's the cocktail of drugs we take that make us sickly and fatigued.
On the whole I am more mobile, not running around like a rabbit or anything, but feel a bit more human.
I hope your improvement continues, but is pain relief the only answer?
Take care and keep in touch. Big hug x
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Date: 28.02.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Glad to hear you feel more human I know I cannot take tramadol not even one they make me so sick actually being sick so would think they probably are making you feel sick and yes know what you mean about all the drug's we take making us sick and tired I think that to.

The emerancy doc say's if I feel any pain's in the leg's or numbness down below especially after visiting the bathroom have to go straight back to casualty so that mean's just have to take drug's and hope that it does not get any worse and if it does over time I would have to get an op.

But if I get my drug's reviewed that should stop it getting any worse.
Have a bit of good news this evening have felt a good bit of relief although I did have my bio-logic injection to day unless that has helped so yippee I am coming around a bit.

Have to still watch what way I walk but a least not screaming getting up of the chair and can walk from room to room so that is good.

So thank you again for listening to my moaning and being there to have a chat to and of course if you feel like a chat I am here.

Have a good weekend and take care of yourself lots of love Deborah x
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Date: 01.03.2013
From: Emm

Subject: Re: Ceased up today

Coffee break time again!!!
I'm also grateful to you and the other ladies on here, as we've said. It certainly helps.
I hope you have a nice weekend too. My niece is having a 40th birthday party tomorrow night, with a Bon Jovi type band and some burlesque dancers in a club so I am looking forward to that.
I like to see all the fashions the young ones wear.
Keep as well as you can and 'speak' later. X
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Date: 01.03.2013
From: Deborah

Subject: Re: Ceased up today

Hi Emm,
Have a great time at the party wouldn't mind seeing the dancer's myself.
Feeling a lot better today so will try and do something nice myself might get other half to take me out for a meal or something.
So enjoy yourself lot's of love Deborah xx
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