PAIN, Please go away......: Good morning. I have now... - NRAS

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PAIN, Please go away......

sylvi profile image
5 Replies

Good morning. I have now been off steroids for over two weeks now. I weaned myself off them gradually which is what i was told to do. Now i am in so much pain i don't know where to start.My fingers look like sausages that haven't been pricked. My wrists are the same. My neck is getting where i can't move it without pain and my shoulders i am having trouble lifting them up.You can see where i'm coming from don't you. I won't detail any more in case i bore you all. I have made an appointment to see our dr for tomorrow and i have rang the hospital to get my blood results to give me some idea of what i need to say when i see the doc.

We have had a busy weekend with rememberence. We had a parade saturday morning and then saturday night we had a proms night and yesterday we had our service in nuneaton. I had to go to that as my daughter was leading the parade. I watched them parade by the town hall to the memorial and while they were there i went into the arcade to get warm ready for when they came back. I was then there to see them come back and then we were invited to the ghurka restaurant for drinks afterwards and then we came home.

I will apologise now if i haven't been answering any of your blogs,but believe me when i say i am reading them, But i am just not up to using my laptop as much at the moment.

Love sylvi.xxx

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Tricia-P profile image
Tricia-P

Hi Sylvi

Thought i'd reply to you, so you all don't think I've abandoned you, like Sylvi looke you I read all messages but am not able to answer many, I had a bit of a problem with my right shoulder very swollen this was 4 weeks ago, I had rituximab in July and i had been feeling so well, it was wonderful, Anyhow shoulder woke up one morning whole arm numb and no control of my hand it just flopped, so off to A and E, 9 hours later after xrays and an ultrasound i was diagnosed as my remedial nerve was blocked, also called drunken arm?? I was given a hand splint which kept my hand in an upright position, So please go and see about your shoulder.

I'm not allowed steroids in tablet form as the spine docs seemed to think they attacked the bones more than the NHS guidelines said. Oh forgot reason for not replying so often as i have to go up in the office more stairs, I dropped the laptop picked it up with hand in splint thought i'd got it, Nope screen went black broken, saving for a new one lol.

best wishes

Tricia P

Poor you Sylvi, lets hope you get something to help with the pain when you go to the docs.

Glad you are looking over all the blogs, wouldn't be the same if you weren't. We will all have to be on our best behaviour, so you don't have to hurt your fingers typing.

Let us know how you get on.

Mary x

Hi Sylvie,I can't believe you've been left in so much pain.Have they upped your dose of MTX yet. I seem to think you were still on a fairly low dose.Forgive me if I'm wrong. I know we shouldn't keep taking oral steroids, but couldn't you get a muscle jobby to tide you over?I know that sounds a contradiction in terms but I kind of thought the muscular ones didn't do so much damage. I remember when you just had your knee replacement to worry about, and the fact that you're now in so much pain seems so unfair.

Hugs to you

Carolyn x

I think you are being very brave and coming off steroids after so long a time on them is extremely hard so you are obviously in cold turkey for now - but it can only get better I'm sure. Hopefully once you are off the steroids they will be able to see more clearly how much of your pain is due to RA and how much is due to Fibro and medicate you more effectively for both. Also it will be so much better for your bones and for your weight too to be off Prednisolone so try to focus on these benefits if you possibly can. They should give you strong NSAIDs to take as you come off though and being in so much pain is not okay so I hope your doctor can help you on that front while you adjust to life without steroids again. Tilda xxx

Had not seen this prior to my pm. I do hope you get some relief soon. Take care xx

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