Lupus or not

[Gail41]

Hi all. I am under Dermatology and Rheumatology for SLE. I still have the discoid rash, had this for 8 months now along with visibly thinning hair. I have severe fatigue and aches n pains absolutely everywhere. However my bloods are negative. I am not making this up and I am symptomatic so why do my bloods say there's nothing wrong

[misty14]

Hi Gail

It does seem crazy to be ill with tough obvious symptoms like yours and yet it doesn't show in our blood tests!. Welcome to the tough world of connective tissue diseases!. I am in a similar position to you and have been for 29 years and we are not alone!. Are your Consultants willing to treat you regardless because that's what we need?. Hope I've helped?. Happy New Year. X

[Gail41 in reply to misty14]

Hi Misty, thanks for your reply and happy new year to you too. My Dermatologist is treating me for the discoid rash with steroids n hydroxychloroquine. My Docs have me on Amytriptaline and Tramadol for the pain and have referred me to Rheumatology. I have my 1st appt on the 2nd of Feb. Dreading it. My work are pushing for me to go back but I don't feel able to so they're sending for a medical report which will most likely say there's nothing evident. Just feel like all the doors are closing to me, but I'm still suffering. Feel like I'm going to end up with absolutely nothing n still be in pain to boot. It's rubbish xx

[misty14 in reply to Gail41]

Hi Gail

I'm sorry your having such a tough time and hope you get a breakthrough with Rheumatology in Feb. The Consultant will do more detailed tests and you may get a diagnosis. Take a list of symptoms with you and notes on how they affect you and photos of your rashes.

As to work, if you get any problems with them contact the Citizens Advice Bureau who have employment advisors who will be able to help. Also Lupus Uk have employment fact sheets that you might find helpful. It's good your being treated and good luck for your appt . Let us know how you get on. Happy New Year. X

[tjperfick]

Hi, I am in exactly the same boat, negative bloods, rashes, fatigue etc. I have been diagnosed with sub acute lupus and query SLE, but am treated with plaquenil, have been on and off steroids and also recently tried azathioprine. Great news for me and to also show the doctors is that these treatments do work. Had to come of aza though because of sickness, but will be starting something else in the new year.

What I am trying to say is I don't mind that I do not have a formal diagnosis of SLE yet, because the fact that the treatments do work is proof to me what is wrong with me. Hope that last bit makes sense ?!!

[Tinka10753 in reply to tjperfick]

I'm new to this site. From all that I've been researching about connective tissue disease's, there's still a lot medical science does not know. Good luck to you.

[gratitude]

dear all, i have also symptoms of fatigue , loss of hair, muscle pain with no cause all of these but my doctor says i have nothing , haha

we can have symptoms without proof ,

there was a summit in November , about autoimmune disease and it's functional medicine

it's really interesting cause they try to find the cause , i wish i live in the united states but i bought the whole

summit , and i'm trying to help myself as much as i can , till now i have seen some progress.

hope you all can benefit from it and also there is the book of dr Amy Myers ,

good luck everyone.

autoimmunesummit.com