Will never get the hang of RA: Missing a week of... - NRAS

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Will never get the hang of RA

8 Replies

Missing a week of baricitnib by accident it’s been a slow slog trying to get back on my feet . 2 weeks plus of pain and mobility problems with lots of heat/ice packs along with Epsom salts baths there has been no improvement. Last night was my worst ever for pain. right foot painful and very very hot stiff doesn’t cover it no mobility in foot ankle and knee back on stick . Rang clinic and got the most useless nurse who wasn’t listening and kept harping on about my hands which were bad in April and me saying not hands foot on repeat. Upshot no senior staff available all on holiday and consultant not back until Wednesday and maybe a steroid injection then she will ring me . Braced myself for a long 5 days. Went to work hobbling around came home sat down for a cuppa got up to make dinner.. NO pain /stiffness or heat in fact foot bloody marvellous. How does this happen just like that?

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8 Replies
Lolabridge profile image
Lolabridge

It was always said that consultants took Friday off to play golf. So perhaps the highly qualified nurses go and caddy for them!! 😂Sorry you were in such pain and couldn’t get any help.

Thank heavens for your miraculous recovery and May it last!! X

Mmrr profile image
Mmrr in reply toLolabridge

Lol

Pippy25 profile image
Pippy25

So sorry to hear you have been in so much pain and that there isn't anyone to help when you called too. Sometimes there is no rhyme or reason with this disease and as you say one minute you can be hobbling about in pain struggling to mobilise, the next poof it's gone (or the other way round). Hope it stays that way for you and that you can get to speak with someone at the clinic who CAN be of help. xx

Mmrr profile image
Mmrr

RA, likes to keep us guessing. Dr Iain McInnes on the NRAS update yesterday explained it as the autoimmune system being ' distracted' from it's job....he used the analogy of him thinking about something else whilst making tea...he forgot to boil the kettle (distracted) and made a cold cup of tea, still tea, but pretty unpleasant.

I liked the analogy.

I guess your immune system is fed up with cold tea and off distracting something else now...lol.

ElizabethW profile image
ElizabethW

After your accidental week off, maybe your med is kicking in again. Hope it keeps up.

Mmrr profile image
Mmrr

How are you doing now ?

Thanks for asking.

Saturday and Sunday were the best I’ve had for years . Totally symptom free . Then last night sweats/ woken by various joints . Ankle and Achilles unhappy and hands have lovely jelly joints this morning . Sicca and lichen sclerosis active too .. those 2 lovely days look like the calm before the storm. X

Mmrr profile image
Mmrr in reply to

😥

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