This site has been invaluable lately. Now I know there are other people out there that can understand what it is like to have lupus but one thing that seems to be a regular theme is the quality of help you receive from your rheumatology doctor and GP.
I have been oh so lucky with both of these people and have felt all along that they have listened and tried to help all they can.
Surely I can't be the only person - or am I?
It sounds like you are well looked after, getting great support from both your GP and consultant. You are very lucky! :0)
I often feel quite abandoned and have to make a nuisance of myself to get something done - this, when you feel poorly and horrid, is the last thing you want to do!
Thank you for the reply but disappointed that you seem to feel alone and not being understood properly by the medics. A change of doctor is always an option - have you thought of that or is it a possibility?
no i think my diagnosis has been relitively fast compared to those ive read here. from getting referred till now 7mths but previously 2yrs of non specific illnesses so really no wonder they didnt no what was wrond and kept telling me i had post VIRAL SYNDROME and it would go away in about 6 weeks.
My consultant tells me lupus is an illness that is more the elimination of things and the collation of things rather than one big all round desease.
For years my illness was put down to being a mum of 4 kids and that is why I was so tired and ill and given a bottle of ibuprofen and told to take it easy - ha fat chance that could happen! Glad to hear your diagnosis was quick for you.
i have a fantastic gp who actually does quite a bit of my monitoring via email, i can update him as to how i am or medication changes, ask for a telephone, appointment, a proper apointment or home visit via this method so most of my care is under one person. but my rhuematology team are really short staffed at the moment so getting hold of them is really frustrating, though they are good.
Nice to hear that you are getting well looked after - it makes such a difference knowing somebody understands and will spend the time to listen to you.
I don't really see my gp 4 anything to do with lupus as they rarely know what to suggest. Although they have been good writing relevant reports to help with benefit etc. Great rheumatology team though, I usually go to the hospital every few months, every month at the moment, either seeing my consultant or nurse to check up on things. If I have a problem I ring and leave a message, they get back to me the next day at the latest. Helps to know they're (almost) readily available. Hard waiting for that next appointment when you're suffering though, pity they get busy and can't squeeze you in somewhere.
Nice to hear that you are being looked after. It is such a relief to know that there is someone who will listen and take time to talk with you.
I to have a fantastic GP and rhuematology team at the Norfolk and Norwich hospital. I think I have been lucky (if you can call it that !) from start of symptoms until diagnosis it was six months. My Lupus nurse is also extremely patient and understanding as she also suffers from Lupus. At the start I was seeing the consultant every four months but it has now been changed to six, I assume this is because they are very busy and feel that I only need to see them every six months. My GP surgery has been wonderful I live in a rural community so when you phone up the surgery you only get to see your GP unless he is on holiday and they have a locum who we all know, this gives excellent continuaty of care. I am going to my first meeting of the Norfolk strand of Lupus UK today and I am really looking forward to it. Regards Chrissy
I have 2 amazing GPs that I see and my Rheumatology Dept at Peterbrough is brilliant. I only have to make a call and they'll ring me back with help, appointments or advise. Sometimes they call me to check how I am. I know my rheumatologist is going through writing to all of the surgeries in the area too to get help to people. They're lovely people and they definately make me valued and will listen to all of my concerns, am very lucky.
Glad to hear that you are being looked after and have someone to talk to that understands your condition. It makes it just a little bit easier to cope with and anything that helps (no matter how little) can only be a good thing in my books!
took years off complaining to gps........so many wrong meds given till a locum doctor said im sending you for lupus tests........abt year from start they said sle. since then 7 years ago western general in edinburgh rem dept have taken great care of my treatment and still are. so thanks to them
It makes such a difference having a good network of GPs and hospital consultants does'nt it. I just wish every one got that - it is after all what we rightly deserve and need to handle this illness properly
Take care - Irene x.
I am not leaving this group...
Am I stark, raving bonkers? 🤤
Should I be mad or am I over reacting
Life is hard but I am harder :P
