s.l.e and confused

You're welcome, and Happy New Year!

Hi, Margaret,

Sorry to hear about your poor experience of the medical profession.

I was really lucky as I had an understanding of Lupus from my years as a qualified nurse, but it is still daunting when you yourself are faced with one or other of the Autoimmune diseases. I have been blessed with a very good team of GP, Specialist Nurse and Consultant Rheumatologist who not only listened to me and my long list of medical complaints but also provided me with the necessary literature to read. 

As I suggested to Lisa, please google/search the Lupus Foundation website and indeed this one - patient.info - for further information as they are very informative. I also found Labtestsonline to be excellent. This website explains what tests are done, what they look for and explains what the results might mean. There is a drop down menu for all possible tests and another for the multitude of conditions and diseases which can be tested for. They also provide links for other useful sites. The US site is better than the UK one!

Best of luck.

Hi I hope things have settled down for you, I'm wondering how you have got on with your application for p.i.p as iv just applied but have been told it may take 6 months, has anyone else on here had an assessment  for pip as with lupus most days are different, health wise.

Hi Susan, I am just interested if you are still working for the NHS? I have lupus in my family unfortunately and now I have it too. If I am lucky one hand works most days, sometimes both hands give up the ghost, it changes day to day. My job is VERY hands on (I work with acute stroke patients), struggling to know what's best to do? Seriously thinking of ill health retirement, but Trust not clear. Have you any advice?

 

Hi,

Yes, still working, it's a very busy Day Surgery Unit until of course they use our beds for very sick medical/DME patients, because of course we have all the right resources and equipment!!! Luckily I'm part-time so have some time between shifts to recouperate. For a very long time, though, my feet were very painful and I did find it to carry on each day whether at work or not. 

I, too, have problems with my hands in addition to the feet (more specifically my finger joints - if I exert any pressure when opening medicine bottles or the lids on pee bottles I really suffer!! Luckily my colleagues are very understanding and helpful). I have considered speaking with the staff in our Occupational Health Dept as they were very helpful and understanding when I was off work for an extended period due to an ear infection followed by two unrelated surgeries. At the moment, though, I don't feel too bad. You may want to consider a chat with them. Also, have you contacted your Trust's HR department? They should be able to give you an idea on what criteria there are for taking early retirement on health grounds.

I've just recently commenced Hydroxychloroquine and am due to see our Rheumatology Nurse in a couple of months, I plan to discuss things with her regarding future plans to retire early on health grounds, depending on how I am at the time. Perhaps you could also discuss things the specialist nurse in your Trust? 

Good luck.

'Hard' to carry on!

Hi,

I did reply to you but the post disappeared! Yes. I'm still working for the NHS. I have problems with my feet and hands, especially my fingers. luckily, though, I have understanding colleagues.

You could try your Trust's Specialist Nurse for Rheumatology, (if you have one) for advice or perhaps speak with the Occupational Health Dept. Also, speak to HR to find out what criteria they may have for taking early retirement.

Good luck.

I see my original reply is back!!

Hi Susan, thanks for reply. I have spoken to Occ Health and HR and had a moving and handling assessment, done my risk assessments ,spoke to pensions people etc etc etc. They all say I need to give this time and it might get better, but given my hands are so weak, stiff and painful, sometimes I wake up and I can't feel them, it takes me over an hour to get sorted. I have been trying to go back to work since November now, part time, shorter days, less days, you name it, I went in for an hour and a half the other day but couldn't hold anything in my hands let alone do some admin, I just went home. I have managed a couple of half days but then spent the rest of the week and the evenings either in a bath or in bed. The last full day of work I did was in July and even then it was painful. I think I need to be realistic and just retire and then if and when it gets better, just find some part time job that I can do within my limits. I don't think I can realistically perform safely and effectively clinical duties ever again. I know alot of people are far worse than me on this forum, but I was a very dedicated clinician and it is becoming increasingly frustrating that I can't do my job. I cannot find info on people who are still working in very manual jobs with lupus, I think it is because there aren't that many! Cheers anyway

Sorry to hear that you've so little joy with staying in work. It is demoralising to face the prospect of early retirement but I suspect it may well be the case that you must give in to your body's wishes, at least in the short term. You may well find that given time you may be in a position to return to work if not in your previous job then in something similar.

May I be so bold as to suggest that you discuss disability status with your GP/Consultant as it would seem that your hands are not only affecting your ability to work but also your everyday life. Instead of taking early retirement and possibly affecting future earnings/pension etc a disability status (even in the short term, say a year or two?) may entitle you to alternative means of funds/income and the possibility of a less 'hands on' job (sorry for the pun!!).

Best of luck.

Hi Lisa,

That's excellent news. Hopefully you won't have too long to wait.  May I suggest that you compile a list of all your symptoms now matter how unconnected or irrelevant they may seem, also include your medical/surgical history and any family history, then give the list to the Doctor/Consultant when you have the appointment. I did this and it proved very useful. A couple of other posters have suggested a daily diary of how you feel.

As to the natural remedies, I've not looked into this area but there was a post which mentions something available in South Africa (I think) - have a look at some of the other posts in the Lupus Forum or try an internet search for anything that might be useful.

Wishing you the best of luck!

Hi, Lisa

That's excellent news and hopefully you won't have too long to wait. In the meantime may I suggest that you compile a list of your past medical history (include surgery too) and all of your symptoms no matter how unconnected they seem. Also include your family's medical history, then give it to the doc when you have your appointment. I did this and it proved to be useful.

As to natural remedies....... this isn't an area into which I've looked, however, there was a post on this forum which mentions something which is available in South Africa (I think!), so have a look through the Forum. You could also try an internet search.

Wishing you the best of luck.