LUPUS UK
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Hi everyone took ages to get this far reading all your stories.Ive fibro menieres disease chronic sinisinus dont know if I have lupus

IM FALLING APART I WANT MY DR TO SUGGEST LUPUS TESTING .I HAVE BUTTERFLY RASH DR SAID IT WAS RISECEA DEFO NOT AS SUN KILLS IT EVERY SYMPTOM OF LUPUS BLOODS CAME BK LIVER ENZEMES LOW AND LOW SOMETHING IN KIDNEYS.I THINK THERE OVERLOOKING LUPUS MY SCALP FULL OF SORES AGONY IM CRYING WRITING THIS READING EVERYONES I KNOW I HAVE LUPUS IM IN A BAD WAY .THEY BLAME EVERYTHING ON FIBRO IM SORRY IM NOT GREAT AT WRITTING AND WOULD LOVE SOMEONE TO DIRECT ME IM ALWAYS AT MY DRS NEVER BEEN TESTED AS I FEEL IM NOT BEING HEARD ANYONE HELP ME I THINK IM GOING MAD THANKS X

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Hi loveableme,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request. I suggest taking this with you to your next appointment as it can be a useful aid in explaining your symptoms: lupusuk.org.uk/request-info...

I am sorry to hear that you are not satisfied with your doctor’s performance, have you thought about getting a referral to see a different doctor? We published a blog article which has a section discussing how to change doctors and getting a second opinion: lupusuk.org.uk/getting-the-...

Fibromyalgia can be commonly diagnosed during early stages of lupus. There are specific tests and criteria that are required in order to make a diagnosis of lupus; you can read about them here lupusuk.org.uk/getting-diag...

Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Have you thought about requesting a referral to a dermatologist for your sores on your scalp?

We published a booklet on lupus and skin which you may like to read: lupusuk.org.uk/wp-content/u...

Also, here is the link to our ‘LUPUS: The Skin and Hair’ factsheet: lupusuk.org.uk/wp-content/u...

Sometimes, certain situations can be tough. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk with your name and address.

Please let us know how you get on, wishing you all the best.

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Tyvm im in a flare of which I blame fibro im so sore every piece of me I also crying depressed scalp down to feet and Im on pain patch lyrica cymbalta and feel I cant cope anymore.Thank you a glimmer of hope replying to me.one dr said my rash the shape of butterfly was roscea another said I think its a skin infection ive every symptom and feel like im a burden to the new drs about 2years with them and I hold back I think there sick of looking at me.xx

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Also worth thinking about Sjögren’s with your symptoms as it often causes sinusitis, Menieres (I have this), sun sensitive rashes and hair loss too and terrible fatigue. It is often misdiagnosed as Fibro or ME because it causes so much pain and fatigue for many. If your bloods are negative for Lupus then it’s quite likely to be Sjögren’s as 40% have negative blood. Just a thought to add to the possible culprits that is making you feel so awful.

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Hi twitchytoes before I posted here I read everything you wrote your so caring understanding and so happy you replied to me. Ive never heard of this but did go to drs about my tongue stuck to the roof of my mouth ive no saliva she give me glandosane said when I get op on sinusis this will stop my gums bleed have sores on them ways chopped lips when I went to dentist a year and a half a go she took a teeth out I had no saliva pointed for her to stop till I swallowed she did in that time I swallowed the tooth she took out she said never in the twenty years of dentistry has this happened.She told me to see dr bit thats all they have dine for me so far ive multiple illnesses twitchytoes im so ill I feel when I wake up in morning there are people working in my house noise from tinitus im going insane feel alone noone understands I can I approach dr about that sj illness whiteout saying the name sj for short and twitchytoes tyvm replying means so much to me.xx

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Ive rashes hairloss and the fatigue chopped lips gums sores im a mess.x

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Loveableme,

Just to add to wonderful replies here...

Please contact BSSA- British Sjogrens Society Association helpline. I feel sure they can help answer some of your questions. The team are very friendly and knowledgeable. You need support at this very difficult time.

If you are suffering Sjogrens, the team can advise you on the location of support group meetings. They also offer lists of Sjogrens Friends should you want one to one support locally. At a cost of £25 per annum, you are also entitled to receive up to date research articles four times a year. As well as tips, news from other sufferers of Sjogrens.

As a fellow Sjogrens, query lupus sufferer, I wish you well. I have a lot of your symptoms. I am struggling currently, with a flare up. It is good that I can pick up the phone and talk to one of the friends from my bssa support group.

Please don't feel isolated. HU and BSSA are my go to. Especially, when some medics let me down at my times of need.

Take good care of yourself. Learn how best to manage debilitating symptoms.

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Thankyou supul for your reply I will take onboard the help you have shared with me thanks again you take care of youselfxxx

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