Frustration !!!

Hi All,

I was diagnosed with Lupus SLE and Anti Phospholipid syndrome in May 2004 after several missed oportunites, I was in hospital for 3 months i had a wonderful Consultant at the time who was their for me EVERY day of those 3 months. I have suffered multiple DVTs in my legs and PE in lungs i also very nearly lost my right leg due to complications but fortunatly the blood supply came back.

Since my diagnosis and my Consultant leaving the hospital i was under, i feel that my GP and new consultant doesnt take anything i say on board i was very over whelmed by what happened to me back then so i never knew what to say to the consultant as i just get on with life as best i can and deal with my flare ups but i have always suffered from joint pain in my knees to the degree i can not sit in a chair as they get very sore and stiff. I mentioned this at last consultant appointment but they didnt seem that interested and i said about having Lupus could it be related, he just said to see my GP about it ie; pain relief. I have recently moved and have no relationship with my new GP and just feel like getting on with it like i have for past few years. I also no longer have regular check up with my consultant only if i was to have a baby why do other sufferers see rheumatologists ?? Does anyone else feel like your just left to it after being given a diagnosis ???

Thanks for listening guys :) stay well xx

3 Replies

  • Hi

    Sorry to hear that you have had such a bad time over the years. Life is definitely not fair. I suppose i am fortunate in that my organs (except maybe kidney) i doing well.

    I think the trouble with visiting your doctors and rheumatologists is that they are under pressure to fit so much in to a clinic session. They do not have time to sit and explain to their patients although that is all some patients need.

    They do have a habit of seeming dismissive, maybe Lupie patients are a mystery to them as we all suffer completely different.

    Just listen to your own body and if you feel you need your GP then keep pestering them. Thats what they are there for.

    Chin up and good health xx :)

  • One of the things I noticed first was the look of fear in the faces of Dr's (even to some degree rheumatologists) the second you mention the word Lupus - watch closely you may see it also. Trouble is this is a reaction that results in people seeming to step back from the patient. This is a disease that mimics so many others that it is impossible to second guess and I found my first rheumatologist totally unable to deal. I was lucky and managed to get into the Lupus clinic in London because I proved my specialist wasn't actually one in SLE.

    Your best defence is to accept that the only true expert in your disease is you. Learn as much as you can about it. Prepare for any Dr appointment with having an idea in YOUR head what is happening before you say a word to them. You then need to come in with confidence - not cocky, just confidence. You need to appear more like a trusted colleague than someone that is telling them there own job. Unless you are at a large practice you may be the only Lupus pt on their books. I have recently changed GP practices and was worried when they called me in for meds review. Went in like this and he straight away relaxed because he could see I was confident with my disease and was able to contribute to all the discussions. Net result was that my perscriptions are now refilled every two months which makes life a lot easier when on shifts.

  • My GP, although very good did not have a clue as to what was wrong with me. One of her colleagues said it was just Asthma that I had when I had pneumonia !!

    Now I have researched it quite well on the internet (not always a good thing !!). Initially I printed things off and showed it to my GP and we sort of learnt together. However, now when I have anything wrong it is quickly attributed to the Lupus.

    It would be great if NHS Direct had a Lupus unit so that we could discuss our worries/fears.

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