Discoid Lupus Erythematosus

[Clueless79]

Dermatologist and GP not able to advise with anything. My Lupus has gone from inflammation of the left cheek to hair and teeth loss in patches. My fatigue and body aches are excruciating and my years of migraines are causing dizziness.I work on a heavy vehicle production line and I'm feeling stuck as I'm being ignored.

I have no idea what is too come and if I can claim PIP of any kind when I eventually lose my job due to my inability to keep up. On top of this I have depression and anxiety and have recently been caught trying to end it.

Can anyone help with this please.

[Didntaskforthis]

Hi Clueless 79So sorry you are feeling like this. Hopefully you are getting help for your anxiety and depression. You will be entitled to Pip but get some help from citizens advice or other organisation.

Sometimes discoid lupus can turn systemic so it may be worth asking for a rheumatology referral.

My dms are always open even if you just want to rant.

[Lucylou72]

Hi, so sorry you are going through all of this whilst doing a demanding job on top. It sounds like you are on your last legs and exhausted with it all and I understand that feeling so well. In regards to pip explain how your illness effects your day to day life and the difficulties/struggles you encounter on a daily basis because of it. If you find it too overwhelming and you live in the uk, the citizens advice will help you with your form by putting your words and experiences into writing and they will also advise you on other help /support .Don't give up on yourself, fight for yourself, there is help out there that will guide you if you reach out. Have you spoken with your doctor about mental health support. Always remember that you are worth fighting for. Xx

[Cas70]

dear Clueless - I have Discoid and Sjogren’s so I have great sympathy. After 7 years and countless consultations I have found a good listening Rheumatologist BUT he doesn’t prescribe or advise on the Discoid. Can I suggest that you try to get to a Centre of Excellence like Bart’s and St Thomas’s in London ? I don’t know where you live but LupusUk do have a list of such places I am sure. Go to your GP and TELL them you want an appointment with Dr ? at said Hospital, even if it is out of your area you are entitled under the Patient’s Charter. I would say also you need an anti anxiety drug like Sertraline. It really helped me and after 3 years I have weaned myself off it.

I’m afraid we have to fight for everything with this chronic illness - no one but we understand the daily struggle mental and physical. So chin up and get fighting !!

Ps Find a support group near you - LUPUS UK will have a list. It really helped me no end.

[Soe1]

Hi lovely,

I feel your pain. It’s so life changing and a lot of the time, debilitating too. I’m a hairdresser in my business and the past 4 years my staff have carried me. There’s no telling when you’ll get a flare up, it’s just trying to figure out what triggers it. I wake up aching and hurting and go to bed the same. It really brought it home when one of my 78 yr old neighbours said to me the other day, oh I can’t do what I used to, I get so tired now snd then! How lucky are you I thought, I feel worse than that in my 40’s.

Have you spoken to your bosses at work

About your illness? It may be a good idea to let them know how much your struggling? They should be understanding, you should try for pip mind you.

Hope you’ll feel a bit more yourself soon, try to stay positive even though it’s not easy to. Xx