Discoid Lupus Erythematosus/ ... diagnosed after a biopsy and have SLE symptoms, Dr now has signed me "Unfit to Work" and had to claim ESA

Im worried I will be turned down for ESA as my symptoms are still under investigation and had no choice but to claim ESA. My first symptom was fatigue and pain as though ive been beat up. Migraines, dizziness,legions and then hair loss. Now I have inflammation of the joints. My hands are painful and fingers starting to curl. I now have fevers (head feels as though its burning) and swelling on my face around my eye. Ive been put on hydroxychloroquine. Im also Photosensitive.

I went to the GP today as Ive had a bad pain when breathing on the left side rib and under my breast.. he put it down to it maybe shingles! and gave me ibuprofen gel ... Ive got my first Rheumatology appointment nxt month... Im just fed up with GP's at the moment, I dont think he will sign another medical Certificate ... that means my money will be messed up and Im still in pain and in limbo til I see the Rheuma ... just lost right now and feeling depressed ... I wish I didnt have all this pain, I wish I had all my hair back & eyebrows .... Feel so alone and as a lone parent feel so isolated :(

Ive had to give my job and college course up ... I just dont know anything about claiming benefits, just waiting for the ESA forms they said they will send me? sorry for the rant xxx

Last edited by

8 Replies

oldestnewest
  • Hi sorry that you are having a rough time at the mo...I also have DLE and SLE..can cope with most things but hate the hair loss!You could try to contact one of the disability groups that give benefits advice or ,if its still going,Gingerbread..which is for lone parents..try the net..or if you have a good citizens advice bureau ask them for benefits advice.

    Why did your gp think shingles?if your chest pain is still bad go back and get him/her to check you out properly..or visit a&e..Make sure you get your gp to do another certificate..write all your symptons down and give him acopy...I am sure many on this site will be able to answer ESA questions and give you alot of good advice..take care.Redfive

  • Hi redfive, thank you for replying, with all the symptoms it points to Systemic however the GP is going by an ANA test in January which tested negative. Ive never had my urine tested and it was only through the Dermatologist I was referred to the Rheumatologist. And through my Physiotherapist Im having an MRI on my knees due to inflammation. As for the gp appointment, he just felt the area and put it down to muscle inflammation which is apparently associated with shingles ... Ive been in pain for 5 days, only went to gp as I had just got over inflammation on my face and eye ... I wish I never went as symptoms keep coming and I am made to feel neurotic, as its only Discoid Lupus. I dont have time to tell him about the fevers that wake me up early hours and migraines, ive also got swollen glands but I just wanted to get out of his office and cry ... but i'll wait to see rheuma ... You've given me some really great help and am so thankful... GP said its very rare I'll have SLE ... Im fine with that but would love to know why Im so ill? Ive always loved my work but after my knees give way, migraines/dizziness and swellings I would be putting children at risk ... let alone the fatigue/pain Im in :(

    I will do a list and I will find a disability group and will go to CAB ... Thank you xxx

  • Oh hun I feel your pain. 2 months on being diagnosed and I am still suffering bad! You need to call the rheumy often and try and bring the appointment forward. The thing is a lot of GPs have no idea about Lupus and just try and guess what it could be. For your chest pain you need a full blood test and maybe even a xray to help see why you are having pain! Go back to your GP see a different doc for a second opinion.

    I hope you get some results unfortunately with Lupus I find it that you have to suffer with a lot of pain and being unwell for a long time until things settle!

    Lots of hugs xxx

  • Thank you AnnieKhan, yes I think the gp is treating the symptoms separately and not connecting it to lupus. I heard many Discoid Lupus sufferers have the fatigue, migraines, dizziness etc but it is never connected. Ive just had my full blood test, Liver and another one for the Dermatologist (appointment next week) I know I have Anemia (had it for over 2 years) still on tablets. Not sure if anything will show up? Im hoping for that day where I can be myself again. I hope you feel better soon too ... big hugs back xxx

  • Oh bless you honey...I have R/A and for quite a while before diagnosis I felt so ill, I thought I was going mad and the feeling of isolation due to feeling so rough was horrible...I too thought people around me thought I was a hypochondriac I was beginning to think that too but eveentually I was at the hospital. It takes time for meds to work but you sound as if you are in a very bad way. Do go back to yourGP you need this to be sorted and don't cry honey, there are loads of good people on this site who will help you through it. I am quite a new Joinee and have had so many lovely replies. Do keep going to GP don't forget he works for you. (Easier said than done..I know) keep in contact with us and talk to people who will give you confidence and belief. Believe in yourself...you know how you feel..it must be very tiring with you being a single parent but help will come dear...just go in the surgery again and again...I know you shouldn't have to do this....!!!! I have a wonderful GP and I know how lucky I am...he sees me every week and he is very approachable. Can you see another doctor? X

  • Is there anyone who can go with you to the doctor? Someone said about CAB they are very good you must get another med cert..try and take someone with you dear.xx

  • hi I have got kids 2 discoid problems. know how isolated it makes you feel. let me know what happens with your claim.

  • Thank you for your replies you lovely people :) xxx... I know many others are suffering ... still worried over the Medical Certificate the doctor wrote out as I think he thought Id been diagnosed with SLE but have DLE with Photosensitivity and Systemic symptoms .... I have not received the claim form to sign yet ( has been 7 days now since phone call claim) The person taking the call was abrupt and snappy ... I am sure the GP has made a mistake ... Im just fed up with fighting the pain symptoms ... and still trying to come to terms with the way I look now :( Ive made a list (long) of my symptoms and going to hand them to the GP and Rheuma when I see them ... Ive rarely been ill until this year, where it has hit me and keeps hitting me ... just hope there are no more horrid symptoms ... Dermatology appointment nxt week find out blood results :/ Maybe it will all disappear as quick as it has hit me? Ahh we can only hope :) xxx

    I will keep you updated tracyxx

You may also like...