FEEL ALONE 😥😥😥

[Naz2005]

Feel useless helpless if my GP was more understanding i may not be this much pain & treatment would have started over 1year ago aw well what can i say just got to deal with it 😫😫😫

[Hidden]

Hi there. Sorry you are having such a nightmare time and feel so angry with your GP for being useless. The main thing is that you have now been diagnosed with and will treated for Lupus.

Many of us here are diagnosed with extra chronic pain or fatigue syndromes which we may or may not feel are correct or helpful. I too feel very angry about stuff that doctors have said and missed over the years. But as others here keep telling me - the anger has to go on a high shelf because, legitimate as it often is, it only makes those of us with autoimmunity more sick so that it becomes a vicious circle.

Hopefully the steroids will help you a lot with the pain if Lupus is causing it and if not then that may point to Fibromyalgia as more likely cause. Just try and let it work it’s magic on you and not let the GP’s bad attitude get you down too much. Take care 😊

[doggydootwentytwo in reply to Hidden]

It took 14 years of horrendous symptoms before my cerebral lupus was dx.......told i had fms then cfs.......lost all my teeth and put on a psyche ward. Not too impressed!

[Hidden in reply to doggydootwentytwo]

Oh good gracious what a nightmare you’ve had..I will try to never moan about being mistreated by doctors again! 🤗

[Naz2005 in reply to doggydootwentytwo]

oh gosh

[Naz2005 in reply to doggydootwentytwo]

oh gosh

[Naz2005 in reply to Hidden]

true xxx

[Kevin53]

Hang on in there, good advice from Twitchytoes. Please keep chatting. Best wishes Kevin

[Naz2005 in reply to Kevin53]

thank you xxx

[Cas70]

You may feel lost at present but this will pass. Try to find a support group near you or talk to the people at Lupus. I honestly thought I was going mad, coming back from appointments not being understood. After 2 years of being left to fend for myself due to indifferent GP practice I actually asked my support group if they knew a Consultant who at least knew what Discoid Lupus and Sjogrens meant. I requested a referral. Have seen her and it has boosted me no end. Just start looking for a Consultant near you and insist (as is your right) on a referral. Make change happen. You are woman, you are strong. Read the poems Still I Rise and Phenomal Woman by Maya Angelou - when you are ready - you will rise.

[Naz2005 in reply to Cas70]

xxx

[Cas70 in reply to Naz2005]

Paloma is right - try to distract yourself. It is those small things that help you move along. Spoil yourself, buy a magazine and read it, watch an afternoon tv programme. I go off to the cinema on my own and eat ice cream and crisps ! Walk in the sunshine. Look for bargains in Aldi/Lidl or charity shops. I have the most beautiful vase I bought one bad day that helped so much. We are thinking of you - it is so common ❤️

[Paloma25]

Sorry you are feeling so bad, and alone with all the problems lupus brings. I hope you get some good medical help. I sometimes find that if I do very small things, like going outside or watering the plants, I feel a little better. This is a difficult illness.

[Naz2005 in reply to Paloma25]

xxx

[Cas70]

Where are you based?