Sticky Blood-Hughes Syndrome Support
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Sick Note

Well, off to GP'a tomorrow to extend my sick certificate as still dont feel like I have any energy to go back to work yet. Gonna see a different GP tomorrow as, no disrespect, but my GP is pretty useless, another doc in the surgery is quite good, so will see her.

My own GP put me on a steroid course for 1 week two weeks ago and it did help loads with the pain, my rheumy is happy for me to go on long term steroids, a low dose, to try and keep the pain at bay, but my own GP is against it because of the risk of osteoperosis. Pain is slowly started coming back in my hands at mo, and a little in my right leg. Dont know if I went on a calcium supplement it would help with the risk of bone density.

Work will be furious if I dont go back on Thursday but only been off 2 weeks this time so far and my job is really hectic and busy ( I am a nurse) and honestly dont think I could cope with work, still napping during the day as soooo tired and aches waking me at night.

Just dont know what to do for the best.

14 Replies

Sorry Sue, that you are having a tough time, not your fault, hang on in there. MF x


Hi sue

I m sorry you feeling so poorly just now.

I wonder if rheumy would prescribe or write to gp asking them to do it? Has your rheumy put you on plaquinil? Has been shown to help joint pain and fatigue, and although it has its side-effects the gp may prefer than long term steroids.

I have asthma so take steroids quite often, gp not happy bout that even.

Also speak to rheumy about calcium supplements, i have low Vit d levels so rheumy prescribed Vit d with calcium. Have your Vit d levels been checked. Probably telling how to suck eggs, you being a nurse, if so Im sorry.

Don't feel guilty about work, Hughes is a rough illness in full flare. So nothing you can do but be kind to yourself and rest hon.

Take care gentle hugs sheena xxxxxxxzz jessielou xxxx :-) :-) :-)


Have no more knowledge than anyone else on sle and aps, i am a renal nurse and dialyse patients in outpatient clinic. Been on plaquinil since diagnosis, 2 1/2 years ago, not aware had my vit d checked, Tried to contact lupus nurse yesterday asking her to contact me but not replied yet. Will ask about calcium supplements too.


Sue x


Hi sue

seems Vit d deficiency not unusual in sle, fibro and Aps. Cause similar symptoms ie joint pains fatigue and muscle cramps/aches. Hopefully rheumy lupus nurse can help. Maybe add higher dose steroids. Or other meds. Gp's knowledge patchy to say the least.

I hope you get sorted soon.

Take care gentle hugs sheena xxxxxxxzz jessielou xxxxx :-) :-) :-)


If she ever phones me back, will let you know how I get on tomorrow, cheers. x


Good luck hon!! Further info is a great site if you not looked already.

Take care gentle hugs sheena xxxxxxxzz jessielou xxxxxx :-) :-) :-)


Hi sue

how you get on with gp today hon?

How you doing.

Take care gentle hugs sheena xxxxx :-) :-) :-)


Hi Sue,

I am sorry to hear about your situation as you are a nurse have you spoken to your Union Rep for support so work will not be such a wally!!

Please do keep us informed and Good Luck


Actually had great visit to GP, never gonna go back and see the other one, will stick with this one if possible. She agreed I have to live now, so has put me on the steroids, 10mg daily. Also given me calcichew for the bones. Also booked me a baseline bone scan to be done to check for bone density. Signed me off work for another 4 weeks. She actually LISTENED, it felt great, I sat there and cried because she really seemed to care. Also phoned Lupus nurse and brought my next appt forward to January..

Thanks for all you support guys.




Hi sue 2803

So glad gp appointment went well and that gp prescribe steroids and calcichew. Good to get baseline bone density scan done too. This gp seems on the ball, hang on to her!! Good news about lupus nurse too. Push for earlier as well if you still struggling, you shouldn't suffer!!

Be kind to yourself! Lots of rest!!

Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)


Hi Sue

I am new to this site but having read your story I am delighted with the outcome for you, it is such a relief when someone actually listens to you, and yes you must live your life for you at the end of the day your employers will just carry on anyway, so dont worry there.

All the best


Hi sue 63

Welcome and glad to meet you, i love your comment about employers too.

No thanks really if do go to work and make ourselves worse. They Will carry on anyway!!

Hope you feeling well today

Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)


Well, I worried about work what they would say and do and I was so stressed up thinking about it. This was in 2008, eventually, after all the hospital appointments and me feeling unwell we came to the decision that I would have to leave on ill health which made me feel a failure. I just could not cope the way I felt so all I can say is that your health comes first and just look after number one. Try not to worry about what they will say and do because afterall your health is so important. I am still not back at work after three years and still feel guilty not working and struggling financially big time. I am just not well enough to work which obviously upsets me but we just have to accept it. Can I ask why your think they will go mad ?


They always do, when anyone is off sick, you then have to go to occupational health and have ahuman resources review, and they sit there, saying 'do you think you are fit to do this job' making you feel;stressed out before even going back to work.

Also feel that I am letting my colleagues down, as when I am off, I know we are so short staffed.

Guilt and stress, wonderful combination!


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