A bit lost


Im sorry in advance if this becomes long winded but thank you for reading it if you do. I haven't been diagnosed yet as the doctors are stumped as to what I have. All my test are negative for Lupus but all my symptoms are showing it. Along with this I have an under active thryoid which i am on medication for as well as being on hydroxychloroquine..as the rheumy wanted to see if it would work for the pain which is has, massively.

The problem I have now is that I am so confused about what to do with my life. I am only 22 and what ever this is is definitely getting worse. I have slept on and off for 4 days, my mouth has started bleeding randomly, im so confused all the time and my dizziness and heart palpitations are getting worse. I could deal with the latter symptoms but i cant deal with this exhaustion any more. I have just got the job I wanted as a lab technician which I thought I could handle as its part time but im finding it a massive struggle. I have just come home from a 4 hour shift and had to sleep for 2 hours.

I dont feel like I can go on like this, I dont want to quit work because ive had to go on esa and house benefit before and I felt so degraded and restless that I ended up trying to go back to work (hence why i am now) but its harder than it ever has been before.

I am due to go in on friday from 8 - 5:30 which i am dreading because up until now i have had to keep being sent home.

I am at such a loss and i dont know what to do or where to go from here. Has anyone else ever been in a situation like this before? and if so how did you deal with it?

Thank you so much,


12 Replies

  • You need a second opinion. If you have symptoms but your blood tests are normal doesn't mean you don't have lupus. It is called seronegative lupus, I.e. The blood tests don't show it. I have this and still got diagnosed.

    If you can't afford a second opinion, may I suggest that you go back to see the rheumatologist or the GP and say you're still not feeling right, you've heard that blood tests may be normal but disease is present, so you'd like to start a short trial of steroids (say 15mg for 2 weeks, then 10 mg for another 2 weeks and then 5mg for the last 2 weeks) to see whether you improve.

    If you have autoimmune disease the steroids will make you feel normal pretty quickly, as lupus is inflammatory and the steroids resolve that.

    Don't give up!

  • Thats a really good idea, thank you for your help. I am seeing my GP tomorrow so I will suggest this and see what she says.

    Again thank you, its nice to know there may be another route for me to go down.


  • Hi louyoung92,

    Would you like one of our free information packs? It includes plenty of information on the condition as well as the process of diagnosis. Which blood tests have you had?

    I can also offer you our 'self-help' guides for people with lupus in the work place, even though you have not officially been diagnosed, it will still give you some helpful advice all the same.

    If you would like me to post the information to you, just send me a quick private message or an email with your full name and address and i will arrange for one to be sent out to you. hayley@lupusuk.org.uk

    Best wishes,



  • Hi thank you I will email you. X

  • I am in the same situation as you. Have all the symptoms but bloods are negative. My rheumy talked about SLE and how 2% of patients can be seronegative. Believes I could be one of that 2%. Wants to wait though before giving me a definate diagnosis so diagnosed me with CTD with the likelihood it is SLE. I have steroids in the past, both oral and injections, and the difference was amazing. Without them I would never have been able to sit through my brothers graduation. Rheumy doesn't want me on them long term though as they bring problems of their own. He put me on Hydroxychloroquine at the beginning of April to see how I get on. I was started by introducing it slowly as I have a terrible relationship with mess in the past. Thankfully I was fine with it and am now taking it as he wanted me to - 400mg a day for two days then 200mg for one day on a three day cycle. I've not noticed a huge difference yet but was told it could take 6-12 weeks before I did. I have been referred for pulmanoray and capillary nail tests but am still awaiting the appointments. At the moment I don't work. I was on DLA and was sent a form to fill in. I had a letter saying I was to be staying on it in the support group so I don't know if that means I have been switched over to PIP or not. not back at my rheumy until November as he wants me to stay on the Hydroxychloroquine for six months. I have a wonderful GP who I have to see regularly in the meantime and if there are any problems then he is to get in touch with my rheumy. I hope you get the help and support you need.

  • Thank you, that's really helpful. I will definitely have to have a look in to asking about the steroids. I am still awaiting for an appointment with a rheumy as I have long lived here. I was in Cornwall but went through a traumatic time with my ex which I think has caused this to flare up. Apparently the closest app I can have is July so hopefully it goes quickly!

    Thanks again for all your help. X

  • Hi was reading your posts, soz to hear your not feeling too good to the min, was wondering how you got on at the drs???? any luck???


  • Hi ,

    Thank you. As good an thorough as my Dr is she's said she can't really do much until I see my rheumy in July. She does blood tests to make sure the hydroxychloroquine isnt harming my health but that's it.

    I am going through time at the minute where I feel like it's in my head. My bloods are all normal, the only thing they're worried about (and are sending me to see a cardiologist for) is my very low blood pressure. I'm debating now whether to come off the hydro and see if the pain comes back but I'm worried if it does how it'll affect my job.


  • The imagining it is all in your head is completely normal. Your rheumatologist and GP don't seem to doubt you so don't doubt yourself. GPs are reluctant to get involved with rheumatological disorders. The medicines used to treat them are strong stuff. besides that, your rheumatologist seems to have a plan in mind and anything your GP might do now could interfere with it.

    Good luck with everything and keep in touch with the people on this board.

  • That's vey helpful, thank you :) I hadn't thought of it that way. X

  • Hey Lou! I know what you are going through :) we all know!!

    its hard to live our youth with a disease that keeps trying to take back our energy....keep yourself active as much as you can and positive towards life! Take it easy on yourself :)

    Trust your doctors and if so, get 2nd opinions for your own peace. Things will get better.

    love and light


  • Thank you for being so kind, it's really helpful. I try to be active as much as possible and I'm determined to stay working as its good for my mental state.

    Thanks again.


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