Early morning pain

Now I'm off all RA meds and awaiting an MRI scan the old symptoms are returning. I'd forgotten about early morning swollen hands which start about 4 in the morning. I'm just intrigued as to why this happens at this time in the morning. I don't think it's just being immobile.

I'd certainly like to throw cold water on drs who talk glibly about remission. There's a world of difference between meds induced and other remission. And it's no joke to have to go through an unspecified period to know the difference. I'm also appalled by the way clinicians rely on tests - bloods, MRI etc rather than our own experience.

There! My early morning rant

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11 Replies

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  • Oh cAthie, poor you. I hope you go into whatever real remission , if such a thing exists. Very very soon x

  • Hello Cathy

    We are the experts of our own bodies and hospitals should take that into consideration

    BOB

  • I couldn't agree more

  • I totally agree with you Cathie. I've been off all my meds since January and the pain is back for me too. I wake up each night about 3am with gnawing pain in my fingers and toes which drives me nuts. When I phoned the clinic to ask about going back on meds I was told they needed to see if I had inflammation on the ultrasound first to decide if Dmards were necessary! I've been advised to take ibuprofen and paracetamol until my appointment on 25th. The nurse said it wasn't long off but only a person without ra would say that. Just one night is a very long time without proper treatment. x

  • That's interesting. Are they moving towards reliance on these expensive toys to diagnose? That's what my gp was told, that MRI was necessary. Is it a form of rationing? They don't have enough scanners so te wait is about 8 weeks. I'm so sorry for your situation, just the same as me. Are you able to have steroids afterwards? I've got a supply and will start them as soon as they've checked the scan is ok.

    I found myself spending too long in bed so I got depressed and my back started to complain. So I'm trying to get up by 11. And to get out a bit, my partner is going to drive me around so I can see there's a world out there.

  • It'll do you good to get out and about as it does get depressing sitting in the house. I get up at 6.15 with my husband to walk the dogs and I'm fortunate to have a gym membership. Although I can't take a lot of the classes right now I'm managing to do spinning classes as that's done on bikes. I've bought a set of wrist supports which I used today and they really helped. I find my pain is not so bad after working out and think it's probably down to the endorphins. When I'm too sore I can usually still manage to swim and enjoy the warm water. I would imagine I'll be offered a steroid jab if the inflammation shows up but who knows?

    I hope you enjoy your drive and get a better nights sleep tonight. Everything seems better after a good sleep x

  • I can't walk very far, at present but I agree about getting out. Keep going! I'd be interested where you are if you don't mind messaging me. Thanks for your support

  • Why have they taken you off all the RA meds? I'm on biologics have been for a number of years, a couple of months ago I was told I'm in remission and that the drugs were working... I asked if they were going to take me off the drugs, the consultant said no because the drugs were stopping the body attacking the joints, so if he took me off them I'd be back to square one. I've had RA for 24 yrs and altho in remission I've got damaged joints which when I move or walk etc I still hurt, alth in remission. I can't understand why they have taken you off all the RA drugs, it's the drugs that will keep you in remission, hopefully.

    Best wishes

    Judy

  • Judy thats absolutely right. However, methotrexate was damaging my liver. Infliximab - well, that is a bit unclear. They thought for a while that I might have lupus because I reported sun sensitivity. However I went to see dermatologist specialists at Ninewells in Dundee and they laughed that one off. Didn't get back onto the infliximab however and methotrxate kept me wobbly but inflammatory markers down for about a year. Once I went off that, I was in big trouble. You can see the inflammation in my hands, but the rheumy is fanatical about the MRI scan so I have had to wait 8 weeks for that. Inflammatory markers have trebled and I can't remember when I've been in so much pain and discomfort with my hands. I can still type but I can't cut up my morning bacon for instance, or squeeze the shower gel out of the tube.

    There's a big shortage in MRI scanners / staff and using them when they're not really necessary isn't helping.

  • Hi all , I have the worst problems in my hands the pain is horrendous , and like you cathie it starts to wake me up at around 3am I cant lie on my side asmy hands go pins and needles and then cramp and look like claws. So I have to lie on my back which is so unnatural for me . I cant squeeze the flannel out or squeeze the shower gel , or cut my food up !! Its so demotivating im so reliant atm on everyone around me , so emotional all I do is cry , I know its early days with my treatment it just a uphill struggle ... so I admire you all for carrying on regardless , need to find my backbone I think xx

  • Have you any prospect of getting medication? I thought I was going to be started on enbrel today but apparently no, I have to wait another 10+ days for the delivery.

    Traceby, I know how undignified this all is isn't it. Not being able to do things and having to ask people. I'd forgotten how bad this RA can be, I was on anti-TNF for years. I hope you will get some treatment to help. I sometimes put my hands under the pillow, so they're protected (between two pillows).

    I think we all sometimes despair, but then you look at what you have to do and grit your teeth.

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