Pain everywhere : Hi guys, I have been in so much pain... - NRAS

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Pain everywhere

Carolsos profile image
17 Replies

Hi guys, I have been in so much pain these last 3 months. I don't know if it's because I stopped hdy. This morning pain in my fingers, pain running up and down my arms, a splitting headache! The pain in my wrists and fingers unbelievable and in the end I had to put my braces on in desperation. The pain woke me up. Do you think I ought to ring rumey nurse and ask for some steroids to help me. Of course it could also be all the stress of looking after Jim. I am off work until Tuesday, but I might ring work for maybe a few more days. I don't know what to do really? Thanks for listening. Hope you all are enjoying the sunshine. Take care.

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Carolsos profile image
Carolsos
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17 Replies
Boxerlady profile image
Boxerlady

I should do both - ring rheumy nurse and take more time off.You've been through so much recently that you really do need to give yourself a chance to recover; let your sister look after you and listen to what your body is saying - well, shouting! 💐

Madmusiclover profile image
Madmusiclover

Yes! Stopping your drug could do this quite apart from everything else going on. Ring helpline and take some time off work. Get help. Speak to your GP. What would you say to your best friend in your situation? Be kind to yourself. Let us know how you get on. Much love I’m so so sorry for your loss.

springcross profile image
springcross

Hi Carol. I can't add to what's already been said except that stress is more than likely a contributor and you've certainly had more than enough of that. I hope you get some help soon. xx

Carolsos profile image
Carolsos

Thank you all for your replies. X

Oshgosh profile image
Oshgosh

can I ask why you stopped Hdy ?

You’ve been through a lot lately,do you think you are having a flare.

Stress and grief can make you flare.

You need to be very kind to yourself,youve worked very hard looking after Jim.

Now is the time for you.

I sending you a gentle virtual hug.

Take care and ring nurse for some help in the morning

Carolsos profile image
Carolsos in reply to Oshgosh

My chemist could not get hold of hdy and when I asked rumey what to do she said just stop it. I had been on it 7 yes and that was too long! But I have had no other medication to replace it! I rang rumey nurse up today and left a message.

Oshgosh profile image
Oshgosh in reply to Carolsos

hope the rheumatology nurse gets back to you today.x

Fruitandnutcase profile image
Fruitandnutcase

I agree with the first suggestion - speak to your rheumy nurse and ask for more time off and what madmusiclover says too - what would you say if you were advising a friend in the same circumstances? You’ve had such a lot of stress for so long it’s not surprising your body feels awful now. (((Big hugs)))

P.S. Splints might help too, I’ve been using one on my grumpy wrist for the last few nights and it has made a big difference.

Stress was always the biggest factor for me in regards to pain and flares. Amitriptyline helped, as did taking medical retirement…

Take some time off work. Grief will hit you like a train …

Hippo1234567 profile image
Hippo1234567

it’s always so difficult to tell what’s going on. I don’t know your story but how can someone tell you to just drop your drug and not replace it with another? I don’t understand. I take hydroxychloroquine I didn’t know it could only be taken for so long. I’ve had sulfasalazine added, then was asked to try reducing hydroxychloroquine to see if I can do without, and it turns out I can’t. Definitely talk to a health professional you can’t go around in pain like that!

smilelines profile image
smilelines in reply to Hippo1234567

I agree! How can they just have a patient off of medication that needs it. This is ridiculous. And when is the hydroxychloroquine going to be available!

Fruitandnutcase profile image
Fruitandnutcase in reply to smilelines

My pharmacy got my hydroxychloroquine on schedule last week - no problems. I’m using an independently owned pharmacy now because neither of the chain chemists could get my named blood pressure tablets. They could get hydroxychloroquine though.

smilelines profile image
smilelines

I am very sorry that Jim has passed and that you are having this problem with your medication. I think you have been off of it for a month. That is ridiculous. Do you know if the pharmacy has it in now?

madme1 profile image
madme1

Carol, I would definitely speak to your rhuemy nurse, stress can make the pain of ra worse. Sending big gentle hugs.

Deeb1764 profile image
Deeb1764

As others have said RA and stress are not good friends speak to your team and get yourself sorted asap. You dont need this on top of everything and going on for a long time . Big hugs x

Happy5 profile image
Happy5

Yes , yes and yes, Call the nurse for advice and solution. Deffo take more time off, and not surprised you're like this either after the distress with Jim.

Garnacha profile image
Garnacha

When I was given mtx I was told to stop hydroxychloroquine, within a few days I was in absolute agony, spoke to rheumatologist who said to carry on taking it, that blip sent me into a spiral of pain that's still not quite controlled.

When the chemist said they're having trouble getting hold of it last month, I thought I was going to have a panic attack as I'm terrified of going back to that extreme pain, I was lucky to find a different chemist who had some in stock but, when I went to get more last week my usual chemist said they're still finding it difficult to get hold of, they managed to get some tablets but still owe me a few.

I asked if there is an alternative to it & was told no 😔

I don't know what's going on with the supply of them but it needs sorting ASAP, hope you get some relief soon x

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