today is not a good day, now finished my prednisolone and feel like total crap. pain is back under ribs and now short of breath, especially on exertion, dammed twitching is back to and now got twitchy eye. feet are freezing cold despite socks, waterbottle and blanket. starting with the neck pain to so will have more neuro stuff to put up with later..
on the other hand seriously considering a consult at the London lupus clinic, need to rest as going to choir tonight come hell or high water, may not be able to sing but will have a laugh, hope all is good for you guys, mark.
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scoobydoo1
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Hi Scooby...enjoy your time out with the choir and do have a laugh..(.can I swap your cold feet for my raise the roof hot flushes!) Hope you have a better week..take care.Redfive
Feeling cold is lack of adrenalin - I was cold for three months, even when I was theoretically hot (eg after exercise), after stopping steroids. My pain is slowly going - except where it isn't (ie in the permanently damaged places. I had some shortage of breath too but that went.
I hope you can weather it, scoobydoo - now is the moment to play the long game if you can. In a few months you will be free of the wretched little things and hopefully feel better too. Get lots of sleep and use a hot water bottle when you need to! Good luck
Hi , I hope choir went well and you managed to have a laugh even if you didn't have the energy to join in. I sincerely hope you get a referral to the Lupus clinic at St thomas if that is the one you are referring to, I have had Lupus for nearly twenty years and have been passed from pillar to post then jumped up and down and demanded that I get a referral. I started getting treated there at the beginning of this year and feel better than I have done for years. Fingers crossed you get the same luck.
I do hope you feel better soon, I know how uncomfortable the symptoms you describe can be so fingers crossed you got some light relief while with the choir and then you get an appointment in London so you get something more permanent.
Sorry to hear you are flaring again, Mark. I seriously think Lupus specialists are the only way forward with this illness. We need more of them, as London is a long way to go when you are feeling poorly.
I'm going to ask my GP for referral to the new lupus treatment & research centre at Llandudno. It's run by Jasmine Ahmed, who trained with Prof Bruce. I've been told that I'm still eligible even though I live in England.
If you can make it to the London lupus centre, I believe that's the place where Prof Hughes still does some work. So you will be getting the best care possible there.
well guys had a laugh last night and a little ironic when trying to sing stars from les miserable and started seeing them as low sats enjoyed all the same, been in work today but feel like nothing on earth. the clinic im looking at going to is the private London lupus clinic, moneys tight, like everyone but this flares been for a year, its actually the anniversary today and im sick of it now, works making me worse so now to use the proceeds to make me better ( even if only a little bit) take care in the sun lupies mark
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