Drama queen

Yes that's what my family think is wrong with me. A drama queen. I have been ill now for at least 18 years if not longer. Been tested for lupus results came back negative. Though have a positive ANA result. Have raynards and liverdo reticulitis which breaks out into small spots which bleed like ulcers and never heal. Had root canal recently which infected my sinus cavities affecting my face my lymph nodes the side of my neck swelled up, my headache was unbelievable. The infection went down to my chest. I was on 4 types of antibiotics and have two days of taravid and steroids left to take. I get a rash on my face, chest and around my neck on exposure to the sun. Have pains and needles running up and down my legs. A cough and a sore throat and a wierd feeling stomach. Been to a rheumy but he was a pompous **** so I won't go back. He did not believe me one bit. Have decided to take photos when the next flare happens. I am so unbelievably tired all the time. My family think I am not serious when I say I need to go to bed. My husband just says u can't lie in bed all day. I find the mornings are the worst with blood pressure sky high. But later on during the day it gets a bit easier and I can go about cleaning and tidying up the house. Why does no one believe me! I was a working professional 3 years ago when hubby retired and I decided to join him, it worked out well as I was getting more and more flare ups. I honestly don't know what to do next apart from the photos I am now going to take on next flare up. I pray that infection from root canal treatment will be totally gone when steroids finish but I am still having problems with popping from sinus problems. Sorry to go on and on.

17 Replies

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  • I feel for you, I really do. We then start to even doubt ourselves. To my ex husband I'm just lazy and its all in my head, even though I have a diagnosis but seeing as I'm classified as neuropsychiatric, I suppose you could say he's mostly right lol. Push, push, push, push your gp to refer you to another rheumy or to the nearest lupus specialist, which may mean another hospital, or if you can afford it then take your test results and see a lupus specialist privately I.e Prof Hughes at London Bridge Hospital - heard excellent things about his team, supposedly takes a little while to get an appointment but it may give you time to save - lupienat, a member on here saw him, message her for more info. Wish you better xx

  • Thank u so much for your post. It is good to hear from someone who really knows what is going on.

  • Go get a second opinion ASAP, you can't go on like this. The livedo breaking up is suggestive of vasculitis, get it checked soon. Just ignore your family, you will find out with this illness that you'll carry it alone as no one, regardless of how empathetic they are, can comprehend the complexity and unpredictability of this disease. Once you've stopped carrying what others think you'll be able to focus on yourself more. The infection sounds horrific, you poor thing!

  • Thanks for your concern. Really appreciate. Feel that I can't go back to docs till what ever I have flares up and is at its worst before they will do anything. One doc made me see a psychologist as I told him I thought I had all the signs of lupus.

  • Thanks for your reply. Going to see dermatologist as doc now suspects vasculitis.

  • Totally agree....trust your instincts on this. A second opinion also sounds a good move to move too. Having some kind of diagnosis helped me so completely understand. Good luck and hope to hear how you get on xx

  • Thank u I will keep u posted.

  • I agree with purpletop it sounds more like vascilitis especially with the sinus problems too. Go back to your GP an ask for a second opinion you are entitled to do so. Keep taking the photo's and keep a daily diary of everything.

  • Started to keep a diary when I was hospitalised 7 years ago and they just said my bloods were not right and I had a rash and felt really unwell. List is endless and keep adding something else. This time my eyes have been very dry and my mouth doc said I have thrush. Just want someone to give a diagnosis. Thanks for reading.

  • I can think of a lot more drama queens who have nothing wrong with them. A cold is them near deaths door. Poor you I agree with all above. It can be. Lonely world when you often look well but feel rubbish. I get comments because I no longer work but working with this illness is just so hard and I put my years in and struggled beyond belief. Quality of life is worth more than anything, feel for you. Xx

  • Yes u feel lonely with this. Thanks for reading my post

  • I had been suffering for nearly twenty years and then I did what you are going to do. I took some photographs of my face and neck during a flare up. My doctor soon took notice. I was sent to a rheumatologist who was marvellous and went the extra mile with tests of every conceivable sort. Yes, I've got Lupus and all the added extras. I feel for everyone on this site because we all have our cross to bear. Linmur1957 all I can say is that I am with you, take some photos, as many as you can, and insist on seeing someone quickly. Write down everything as you did in the post and make the doctor listen. Or better still, see a different doctor within the practice. I often find lady doctors are more receptive. I wish you well and hope that you will soon feel better. To help your nasal problems - I use Sterimar nasal wash. It is sterilised sea water and since starting it (night and morning) a year ago I've not had the problems I used to have. It is available on prescription and it's also available over the counter.

    Good luck with everything. Kind wishes and love, Carol

  • I feel for you when people doubt you, you doubt yourselfe and ask am I mad no your not you are ill and its NOT YOUR FAULT so please dont blame yourself lupus is a real pig I would not wish it on anyone.

    Please do what you can asap we( the community I belong to will keep you in our thoughts and prayers as you struggle with this)

    Please keep us posted as to how you are untill then good luck god bless Judithxx

  • Oh you poor thing, I was often referred to as an attention seeking neurotic hypochondriac before I got a diagnosis, but recently since I have been worse these disbelievers have had to eat their words! Coming to visit me in hospital has gone a long way toward helping them do that. I agree with others that when you have symptoms that can be seen photograph them so you can show these pictures to doctors, secondly keep a diary of what happens and when and see if you notice any triggers. I wish you all the best of luck and hope you get to see a doctor soon who shows some empathy and looks at all the evidence and can really help you. If you do have lupus I hope you get it treated successfully if not whatever is causing all these problems I hope you get to the bottom of it quickly so that life is more pleasant for you.

    Chin up and I look forward to more posts

    Madmagz x

  • Thank u so much for your post. I sometimes wish that I become really ill so that I can be believed but that is not the answer. Will do all I can to prove something is wrong with me. Just finished 4th week and 10 days of steroids but am still not right. Will keep u posted.

  • Thanks to all who left messages and support. I did not give up this time! Previous Doc sent me to a psychologist. Due to a stressful period my condition flared up so I took pictures of my livedo reticularis and of the round discoid lesions on my legs. I developed a headache and abdominal pains which never let up. The pain in my legs and feet burned constantly and my joints ached along with my muscles. Small white nodules developed on the joints of my fingers of my right hand. A rash developed the side of my head and my hair there has broken off. My raynauds also got really bad. My blood tests came back with no problems which is obviously a good thing but does not help. Anyway the long and short of it is I am being referred to a dermatologist, I am on bupa so I hope to hear sometime this week regarding an appointment, will repost with news. Thanks for reading.

  • Saw a Dermatologist, took pictures and a typed up report I did about my symptoms and dates and relevant medications, this helped immensely he said. Well after 3 weeks he has come back with Antiphispholipid antibodies in the lining of the veins in my legs. He would like to do another test in 2 - 3 months and also a biopsy from my legs. He would also should any more discoid lesions appear like also to do a biopsy on them. He was extremely nice and actually believed me! much better than the rheumy I saw before. Today my doctor rang and asked me to also do another blood test in approximately the same time. Thing is why did my doctor not pick up on this before and will the doctor carry out exactly the same test as the dermatologist did? Do I stick with doctor or go back to dermatologist, which I would have to pay for as used up all my Bupa allowance and more!? Read that is an cheap blood test but are all results same in every lab? Any advice would be helpful. Thank you.

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