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

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

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

poor old youhaving to go through that! Sending big hugs and hope you are feeling better soon!

lots of love

Heather xxx

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

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

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

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

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

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