Is it or not

I was advised by my first rheumatologist that I have CTD, then he said after another test it's Lupus. The Locum rheumy said Lupus and upped my Hydroxychloroquine back to 400mg, as she could not understand why it was 200. So things improved.

Then I saw a dermatologist and she asked about any rashes. I said I get a flare up on my face with the butterfly rash, but it does go. I get the occasional lumps and bumps on my hands and feet. I get red rashes on my arms and chest, and sometimes get itchy bumps on my abdomen. I burn up like crazy and my face, arms, chest, neck turn a blotchy red, and I feel like I'm on fire. It's the same at night. My feet and ankles swell up and so do my fingers. I have joint pain everywhere and my hair comes out a lots and some times in small clumps....more than the usual moult. I am always tired and lethargic and night times I can hardly sleep as so hot and burn up and sweat so much. sometimes my skin feels so itchy, all over. There are days I struggle to get up and move, feels like everything is in slow painful motion. There are days when I could just cry and days when I do. I get pain in my wrist and fingers now in my right hand when I'm typing and writing....,worse then I ever had, and my job involves a lot of typing.

The dermatologist said that there was no mention of lupus in my paperwork, at which point I was shocked. I said I had been told twice lupus and even my GP said this. She has done bloods now, and I'm waiting to go back to see her this month. I took myself off my medication, as I gave up and though, well it I don't have lupus why take the medication....I'm worse than ever, and I guess I want to prove this to her. I'm so emotionally distressed and upset, I just feel it's difficult to cope with who knows what and just want a positive answer. I feel I cannot trust any diagnosis from anyone right now. I feel so messed about. I know how I feel and how my body feels and the issues I have, but don't feel I'm being listened too or taken seriously.

So sorry.....I just had all this built up and needed to finally get it all out.

3 Replies

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  • Well, Tassiewoo, I am sure we all understand the frustrations of dealing with doctors. Sounds like you have been going through a bad time, and I am hoping you would not want to feel any worse. Be Smart, get back on your Hydroxychloroquine - it was making you feel better. The Rheumy prescribed it for a reason, second Rheumi agreed, so they are treating you. Did the Dermatologist have any advice for you regarding your rashes, or how to handle them? Don't make yourself ill just to prove to them that you are.

    I am very sympathetic to your blight with doctors, they all want to make their own diagnosis and so for each new doctor you feel like you have to prove yourself all over again. It looks like we may be moving again soon, after 2 years with one Rheumi that I actually get along with, so I am preparing by getting a "little anxious". My husband doesn't understand what I am worried about, but we all do, Right?

  • Hi tassiewoo...am v much feeling for you...and yes, we all do understand.....I think chapter's reply is a really good one....in this warmer weather, all this dreadful stuff is more difficult too (that's true for me, anyway)...take care

    XO

  • Hi I feel so sorry for you and can understand why you are just totally fed up! I have had lupus for 12 years and throughout that time my gp has made decisions about my meds which have affected my

    Lupus. Currently off my lupus

    Meds and I have had a flare up of joint pain, like you I suffer when typing at work. I've got a rash all over both arms which is so sore.

    I hope they get you sorted, try keep positive I know it's hard! Good luck!!

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