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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hello everybody,
I have just got home from 3 days stay in hospital. I was paralysed with pain and went to A&E friday night. It also meant that I was seen in Rhuematology today before being released. I have now officially failed on Cimzia.
in 4 weeks I will be starting on Humira.
I have also had a new painkiller introduced in to my list which is SulphateMorphine as Ora morph doesn't work with me, has no effect.
I had an intro Morphine dose 5.00 sat morning.....wow, a whole new experience.
We shouted from the deepest pits of our voices about the lack of support, information and treatment I have had to endure to this point and stated several times that I was 'stamping my feet' if only I could have actually done this act.
I have also got to see a Podiatrist as my foot arches have collapsed causing me to walk differently causing more pain and damage to my feet. I will be fitted with insoles.
I had to plead with the Dr on duty in A&E friday that I was worried I was going to harm myself if they didn't keep me in to get my pain under control as they wanted to send me home with no other support.
My god, this is a hard pill to swallow.....
Right, enough now, need to find my positive side to my personality now and hope it hasn't been buried too deep to re-locate and use.
Hope this topic finds you all well and pain free.
Trace xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Trace, so sorry to read your post. Good for you for shouting, sometimes its best to make a fuss in order to be heard. At least you did get some kind of treatment, maybe the ora morph will work and you have to try again (!!??) I have just had insoles made for the same reason you say. It does affect how you walk, and it is hard to make yourself walk correctly again I hope you feel better soon, and that the Humira will have more success Sending you hugs x xBARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Tracey Well, what a bloomin' tough ride for you. Being dragged to the depths of self harm is an utterly dreadful place to be and thank goodness someone had the nouse to admit you and do something about your pain. Surely in this supposed civilised society it isn't too much to ask for some relief from our distress. Evidently that might just be the case! I hope you have more success on Humira; many people do seem to do well on it so fingers crossed it is the one for you. I have been down the route of failed meds on many occasions and understand the anxiety and uncertainty it can cause. Alongside the general ignorance, lack of support and information along the way it certainly is a bitter pill to swallow, but ... ... tomorrow is another day. Your strength and positivity will still be there; it's probably in hiding! Keep the pain relief topped up and rest when you are able. Collapsed arches are very common and not only do they affect the way you walk they can also have implications for the ankles, knees and hips. Orthotic insoles will certainly help with the problem. I have had insoles for about 15 years or so and they do provide good support for the structure of the foot. Here's my HU Blog about feet! Hope things improve for you soon Trace, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Trace
You are certainly having a rough time! There really is no excuse for lack of treatment and it made me so angry when I read your post. Thank goodness for NRAS who are doing all they can to improve treatment for us.
As Lyn says, there are lots of drugs out there, and more being tried and trialled or in the pipeline and I am positive that there is something for you out there. It's just so sad that it often takes a long time to find the right one.
Glad you have got some SulphateMorphine for the pain - as you say "wow".
As a by-the-by, when I had my second knee replacement, I had a morphine pump and can remember being told off in recovery for telling jokes in a very loud voice and laughing with a guy in the opposite bed (also on morphine) in the very early hours of the morning. Apparently we could be heard in the main ward down the corridor!! Thankfully, I didn't meet the guy again - heaven knows what sort of jokes I was telling him!
Much love to you
Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Trace So sorry that you have had to go through all that to get the treatment you deserve! Hopefully things will improve now with the Humira and decent pain relief..Dig deep hun and find the positive Trace thats in there! Thinking of you Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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ooo Trace you poor thing. Good for you for shouting. I've had insoles made too and they do make a big difference to the pain of walking-of course they will only fit in one pair of shoes and we aren't allowed any more for the other shoes! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010 Posts: 271 Location: hampshire
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poor old youhaving to go through that! Sending big hugs and hope you are feeling better soon!
lots of love
Heather xxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Trace Sorry to hear what a terrible time you have gone through, and thank goodness you was able to stay at the hospital and have the treatment you dearly deserved. The same thing happened to me before I was dx with RA and they sent me home, "they " just can t comprehend the level of pain we have to endure, I m sure if they did know they wouldn t have hesitated in admitting you for treatment. Also I doubt if you would have moved onto getting Humira so quickly without the stay in hospital AND prescribed an effective painkiller ! Thinking of you, and fingers crossed for the new one Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Thank you all for your support and kind words.
I do feel that there is no way I would have got to the 'next' stage if I hadn't had a stay in hospital, but this was in my mind when I went to A&E friday night.
I am also now on 30mg Prednisolone daily, bringing it down over the next several months, so had to have regular blood sugar checks while in hospital.
My Mum took me to Tesco earlier, which is a few mins drive round the corner. I thought I was gonna pass out when I got home, I had the shakes, needed a drink desperatley and to sit down. Think I might have gone out too soon. Oh well. But I know I need to get back on my feet. No happy medium in any of this is there???
Tomorrow is another day
Trace xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Tracey,
Sorry to hear of your time in hospital but I'm glad you now have a good supply of pain relief and are starting the humira soon. Hope the steroids work well for you. I certainly understand the shaky feeling after being in hospital! You need to rest for a few days to get your strength back.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Trace, Sorry you`ve had such a tough time, but hopefully things will improve now you`re having some different treatment - you did the right thing by going to hospital. I`ve been on humira for over 4 years now, so I hope it works really well for you. When I saw the podiatrist they made me two lots of insoles - one for my "ordinary" shoes, and another, lighter, pair for wearing with sandals or trainers.They were a huge help. Take care, Kathleen C x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Trace,
sorry to hear what you have been through,
this RA has a lot answer for !!
i will be starting Humira next week.
take things steady day by day and hopefully you will feel better soon,
take care,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Tracey
So sorry that you have been in Hospital and that you have been in so much pain.
The good thing was that you did get the pain releif which has helped you, try and rest and re-cuperate.
I hope you get to start the Humira very soon
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hi Guys,
Sorry to moan on, but I am still in so much pain. My hands are swollen, stiff and knuckles red. My left foot is also still really painful, is this normal???
It' s hard to know what to expect as a 'normal' level of living. This is however the worst I have ever felt, even tho it is still early days for my disease.
I am maxed on pain killers and am taking it easy but making sure I get moving too. I can't wait to get back on my feet.
Trace xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Trace,
have you had a Depo steroid injection recently..?
they can really help.
i've had four in total, two worked fantastically for me for about 6 weeks, the other two not so good.
it's definately worth a try to get you through this awful time.
i call my Rheumy Nurse who sorts me out if needed.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hi Suzanne,
I had a Depo 120 mg just over a week ago which doesn't seemed to have made any difference at all.
Had them before and they always helped, just don't know what to do with myself at the moment. Just glad I'm on summer hols, otherwise the stress would get to me of phoning in sick.
Thanks Suzanne
Trace xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Trace Firstly do not apologise about moaning, we have all been there. I think you are obviously having a massive flare and it is going to take some time to get over this. Its hard to tell you whether to sit it out or contact your rheumy team again to tell them how much pain you are in, especially if you are maxed out on pain killers. I know Jenni has been taken into hospital several times when things get bad and this is the only way she could get things sorted out. She is on holiday at the moment so I am not sure if she is posting but she would be on here giving you some sensible advice. I do also think that stress is not going to help your pain levels. For me personally, the more stressed out I become with pain, the more the pain increases. Yes I am sorry to say that the pain of RA can be viscious. I think if you feel you cannot tolerate this any more then you should get some help, especially with the weekend looming. You should not have to suffer so badly and RA can be a very isolating disease, as until you have experienced it yourself, it can easily be brushed under the carpet by the medical profession. I would tell you to jump up and down to get some attention but I don't want your feet to be hurt any more.  I hope that you either start to feel a little better soon or can get some help. Take care Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Trace I m so sorry to hear how poorly you are at the moment, I really don t know what to suggest although plenty of rest is absolutely essential and as little stress as possible will help as I have found myself. I have heard that sometimes a depo jab doesn t help so possibly this has been the case this time. I am sure others may be able to offer some more advice and hopefully this flare will calm down very soon. Won t be too long before you start the Humira Love Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Tracey
You are going through a really bad patch. Thought after your stop at the 'hotel' last w end would have helped with the injection and the steroid tablets. So sorry to hear that is not.
I take it you work in Education ? I do hope you pick up soon as the Holidays are already half way through. I would ring the Rhummy Dept. again.
Don't mind about moaning I do enough of my own on my posts, as I feel sorry for myself as you know at the moment.
Hope your w end is pain free and the sun shines, the sun always makes us feel better.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hi Rose,
I spoke to Rheummy dept this morning out of desperation, she said about having another Depo injection, but it seems I had another on the ward, so this is out of the question now. She said I am on max meds and this seems to be a severe flare.
She will ring me back later to let me know if GP can do something immediately to help me out. My parents are having a family get together tomorrow to celebrate their retirement. I would normally be really looking forward to this as it means having a good catch-up with me Sis and having a drink or 2.....or 3 .....but not looking forward to it tomorrow as I'm not my usual party bubbly self.
And yes, I am in Education and the thought of going back to school like this is filling me with dread as my principal is not the most understanding of people and not supportive in the least.
I just want to get back on my feet now
Trace xx
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