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Hi newbie here, I haven't got a diagnosis as of yet as I am being bounced from department to department :/

But I am feeling incredibly tired, isolated and of course in pain!

My anti nuclear came back positive, but my Dr is yet to do anything, I had a PE a year ago and still get chest pain, shortness of breath and feel like my bloods to thick sometimes I don't know why. when they had me on Heprin for the PE I felt so good it was weird.

My hair falls out, skins dry, eyes ache have high cholesterol (not off the chart) I crave sugar all the time, have excessive fatigue, loss of interest in sex, cold hands and feet. irritability, depression, anxiety and headache. I am so sick of feeling unwell. I force myself out with the dog and then get pay back where I am so fatigued I can't stay awake. I am also overweight by a few stone which annoys me as I was a slimming instructor!

This has been going on 5 years or more. my skin flares up in the sun too. like an itchy pimply rash in my elbows, sometimes over my face.. I itch quite alot and itched badly during my last pregnancy.

My original Thyroid test came back negative but I have since found maybe they didn't test it all.

I'd just like someone to say hey you're normal this is not a problem this is what you ask for, I am tearful all the time and feel my hormones are so out of balance.

I am so forgetful. The pain I am in in the right side of my neck & shoulder, bicep,elbow,wrist, then yesterday I get pain in my collar bone. I had been moving a few boxes and I pointed at something.. I thought my bone was going to splinter :/

I have read page after page after page on my symptoms and they keep coming back Lupus/thyroid so here I am.

Is this common am I mad and what the heck do I do to get someone to hear me.

So this is me the train wreck.

Hope that someone out there knows what I mean and that it isn't to hard to follow.

I can't give the levels as my Dr hasn't told me. I will go back to see him but really need to know what I can say to him to get him to help me. A locum Nurse tested my ANA my Dr was annoyed but as it's positive I am glad she did.

4 Replies

You have had a PE, felt better on heparin!

Post your question on Hughes Syndrome/ "Stickyblood" forum, they are very kind and helpful.

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Sounds like SLE. You are not going mad. My husband was exactly the same and he was diagnosed in February this year.



Have you had a referral to a rheumatologist for further investigations? With your symptoms and positive ANA test result I believe that this would be the best course of action. If your GP has not yet arranged for this, I would recommend that you make an appointment to discuss it with them.

If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at


I haven't had any referrals as of yet, I got sent to physio and for a scan that was cancelled, But My Dr has written to me asking for me to attend. Which gives me a little hope. He is a good Dr and I am sure he will investigate. I will certainly download the pack. I am just feeling so rubbish right now, I am sure it will be better once I know for sure. Thank you Paul.

Sylvia thank you ever so much, you just feel disconnected you know? I know I have been unwell for years but always put things off, I simply thought I was being OTT and just needed to push myself a little harder, Sadly my body has fought back and for once I have listened.

I just want to feel like I used to,I'm now thinking wow this is it now this is normal. Wow it's no fun at all! :)

But thank you both of you.


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