Cannot move

[thompsonp]

I have had the worst flare I have ever had really frightened cannot move at all been in bed for two days i try to move but I can't called 111 they sent ambulance two young girls came but they had no experience of RA and wouldn't have been able to get me down the stairs anyway. I had some tramadol which I'd never taken before which was good in that it made me sleep. My question is should I try to move being in bed will this not make me worse I'm so scared. Supposed to have mri today but can't get down my stairs

[Ali_H]

You need to ring someone, GP surgery, rheumy nurse, family, friend or 111 again and explain your situation. You also need to let the MRI department know you can't get to you appointment because if you just don't turn up they will discharge you and you'll have to go through being re-referred again.

All the best

Ali

[PFKAAde]

Hi thompsonp

Sorry to hear you are having such a bad time of it. Moving around, however slowly is good if you can manage it, but don't kill yourself trying. Keep drinking water, constantly sipping is better than occasionally gulping. Being hydrated is very important.

Take any painkillers and anti-inflammatories you may have and make sure you take any other medication you are on.

If you can't physically get to your MRI you don't really have a choice, but try and phone to cancel if you have to. They don't like it if you just don't show.

Is there anyone there that is taking care of you? Or anyone you can call otherwise that could call in? What about a home visit from your GP? They do still do them, you just have to shout a bit louder these days.

Can / have you called the rheumy hotline? Hopefully you should should have one you can call in an emergency. Sounds like this is one.

Hopefully these things may help, if I've forgot anything someone else will soon be around I'm sure.

All the best.

Ade

Edit: Ali beat me to it, I agree

[Matilda7]

Have you tried to ring the NRAS helpline: 0800 298 7650?

Hope they can help you.

[thompsonp]

Thank you all I will ring the hotline thanks for all your help xx

[thompsonp]

We don't have rheumy hotline we are told to go to A &E.

[PFKAAde in reply to thompsonp]

Well if that's what they tell you to do and you can't manage a taxi you will have to call an ambulance, tell them on the phone why you are calling and explain that you will need assistance getting down stairs. You might be surprised what 2 young girls can manage - it is their job after all.

Don't let them just fob you off, if they won't send an ambulance ask them what you are supposed to do and tell them you will take action when you feel able if they do not help.

Ade

[Birthdaygirl]

I have been where you are now. I could not move or get to the toilet without screaming in pain. I was trapped upstairs. Memories of a gp who said he would not visit but come and see him when I felt better flood back! I feel so so upset for you.

So, given what you have said, my advice is A &E. What and how you are suffering is wrong. There are people ready to help and drugs that can control the pain now and get you down the stairs. For me it was morphine.

When you have some sort of control back an urgent review of medication is needed. Clearly what you are taking is not working.

This is a rotten disease and we understand what you are going through. Keep in touch.

BG

[pip12]

I carnt really add much more than what has already been said, only people with RA know exactly what you are going through and your post brought me to tears. It truly is a horrible disease and most people have no idea what we suffer. My thoughts and prayers are with you and hope you feel better soon. Xxxx

[smithfield]

Cannot add anything to the advice already given. However the ambulance crew should have a chair they can strap you to to get you down the stairs. You cannot be the first patient upstairs and with very limited mobility who needs to be taken to the Accident Department.

Sorry you are feeling so dreadful.

[Hidden]

You have some good advice ring them about your scan you need to get your gp to send a medicar it will be a ambulance they will get you down the stair and to hospital for your scan and take you back home I use this service when I am too bad to drive my doctor told me about it are you alone it can be scary but you have to try and move even though you are in pain

[popsmith1874]

i really cant add much else but hope things get better soon,this disease takes no prisoners but you need your meds checked as they are not containing things ,take care

[hatshepsut]

I know exactly how you feel, I had a flare like this the week after my husband's funeral. I literally could not move, and I was alone, and terrified. I managed to ring my GP and my rheumatology nurse, She was an absolute star, arranged for my GP to prescribe a steroid injection, and then I had to contact the district nurse to do the injection, She wasn't happy, so I told her straight that either she came, or I would have to ring 999 for an ambulance.

She did come. and when she saw the state I was in, she apologised.....even gave me a kiss!!

You need the same sort of help that I got, and the only way is to insist.....and then insist. After the injection, I gradually regained some movement, but three months later, I am only just getting over the flare. I do hope you get the help that you need

Good luck, M xx

[Sheila_G]

I am so so sorry for you. I have been in that position and I know how excruciating it is. I agree with what has been said but you need steroid injections asap so you can move. Staying in bed is not good. Let hospital know that you can't move and call everyone until you get someone to bring an injection for you. You will probably need more than one. If you can get one and get moving you may need to go for others over the next couple of days. That's what happened to me. Good luck. xx

[Mandalou]

How are you thompsonp?

What happened, are you ok?

Mx

[thompsonp in reply to Mandalou]

Thank you so much for all your good wishes it makes such a differences as you all understand. I managed to get out of bed down stairs took two hours and had mri I borrowed a wheelchair which helped I saw consultant the next day he has put me on 30 mgs of steroids never had that much b4 only 15 mgs. Not happy as I had just been weaned off them as GP said I had been on them too long feel really ill from them and have cramps all over my body. Consultant said it would help until mtx kicks in but it's made symptoms worse I know it's only been 2 days maybe I'm expecting too much

[Mandalou in reply to thompsonp]

You are having such a terrible flare thompsonp!

I just have such huge empathy for your situation as only those who have had this happen can understand that screaming agony and total incapacitation a flare like this brings.

The steroids will kick in very soon and you will be functional again, stick with them and this will soon be just a rotten memory.

Hope you have good people in your life who understand and can help you through this awful time.

I don't know how quickly you came off oral steroids? But this in itself can exacerbate inflammation. Apologies if you explained all this in your original post. Anyway you won't be on this large dose for long.

Sending gentle hugs of support to you.

[thompsonp in reply to Mandalou]

Thank you so much xx

[Birthdaygirl]

I woke up thinking about you too. Hope you are ok.

BG

[thompsonp in reply to Birthdaygirl]

Thank you so much your thoughts really help xx