Went to hospital and they made me feel like i was wasting their time.

[denisep]

Had chronic fatigue for 2 weeks, Saw the Rhumy, (he said well we need to see you eat fresh veg and more exercise! Yes, I am a size 20, but have cut injections down to 3 a year from 5 of steroids) two weeks ago who saw me, and said chronic fatigue is just part of the course go home and sleep you will feel better. A week later still in bed and in the end I slept 24 hours straight, slurred speech, forgetfulness. Husband called ambulance as they couldn't wake me. Went in they said I had Low grade fever, viral infection, was in overnight they said blood count fine. They actually said "We don't know anything about Lupus", your fine, go home. Now at home and 3 days later my nose is still blocked fatigue is not quite so bad, head is still killing me, and feel to be blunt awful. I feel that they have just pushed me under the carpet.

[Thaddeus]

Sadly a lot of us have had to deal with medical staff who know nothing of lupus, and have been dismissed. Worse of course most of us have had close friends and family treat us no better.

Get lupus tattooed across you forehead and it just might be recognized.

[dgleds]

its true...

[teaparty]

sorry to hear that you have had a really bad time of it. it is not nice at all. But you are right every time I go see my rhumy I just get told to come back in 3 months I feel they dont listen when you tell them how you are feeling. its ok for them to tell you to exercise more but when you suffer from the chronic fatigue it not very easy . hope you get sorted out soon x

[lennox]

That is disgraceful if they don't understand lupus they should ref you to a hospital tht does I'm lucky to be under guys and at toms for mine and my team I'm under are fantastic, and listen to your problems and how you feel, I totally understand the way you feel as when I have a lupus flare up that's what I'm like I can't even move, and sorry to say medication is the only option try and asked to be ref to a different hospital, it might be a journey but believe me it will be worth it good luck and don't take there crap no one knows your body better than you x. Good luck

[denisep]

Thank you, I feel better today than I have done for the last 3 weeks, but still sitting on the settee. Yesterday I managed to go out for an hour. The Doctor said "do you think you are depressed?", OMG! I really am angry with the treatment, my husband said what is the way forward now to them and they said, just go to the Doctors. You can tell that I am feeling better as I am starting to get angry with the treatment.

[rlupus]

Hi i feel for you i no what your going through , i get treated the same at my hospital the care has long gone with all the cuts they keep making, i am now a size 18/20 due to steroids i will never come off them as i have chronice obstructive airways ,as well as lupus , and anti phos lipids, i get very tired no energy i try to eat well but some times i skip meals as feel to ill, i am on anti depressants to but dont seem to help , i have to go to my gp twice a week for bloods to be taken as my INR is all over the place never stays stable and i have got a port a cath inserted into my chest as my vains are rubbish,and its the only way they can get blood from me now,

anyway keep well keep fighting this horrible illness, xx

[tintin49]

I agree its not good..hate going to a&e but sometimes things are just soo awful and I am so afraid. I live with my daughter who is 20 with special needs and I am desperate sometimes both physically with lupus and mentally with the lack of treatment and respect.