Hi everyone, I'm new here. Feeling a bit lost and hoping someone can help. I'm wondering if I might have Lupus. My current symptoms are face rash (along cheeks and over nose mostly) plus chronic exhaustion, hair loss, muscle and joint stiffness, hypersensitivity (all senses including to light and chemicals/tablets etc), red bony lumps on joints of hands, brain fog, candida, difficulty staying asleep at night, anxiety, suspected raynauds (very sensitive to cold in that I have a lot of pain when I touch something cold, and cramps when in a draft). I spend most of my days in a day bed too exhausted to properly look after myself and home.
I'm nearly 40 and I've spent most of my life banging my head against various brick walls with doctors I Finally got diagnosed (begrudgingly!) with "subclinical hypothyroidism" though my test results show I have autoimmune Hashimoto's which my mother also has. I started treatment this year but it's been a bumpy ride and I still have all the above symptoms.
Once I got my thyroid diagnosis I felt I could venture pushing my gp about what I think/thought were rheumatoid arthritis symptoms. I discovered how if you have one autoimmune disease it can put you at risk of having others. My mother's mum had RA and was crippled by it in her sixties. When the lumps formed on my hands I pressed my gp about it and he referred me to a Rheumatologist who I'm to see in a few weeks for the 1st time.
But as I read more about RA I found out about Lupus... and suddenly everything seemed to fall into place! The mysterious rash on my face could have a part in my symptoms. The difficulty getting a diagnosis all my life... even my thyroid problems could be part of the picture?
But after fighting to get my underactive thyroid recognised since age 15.... and with the onset of debilitating worsening symptoms, I'm So Very Tired of fighting and fighting and being treated like a hypochondriac. I feel I should just be Grateful for finally getting my "subclinical hypothyroidism" diagnosis and leave it at that. But no, I can't. I would love to say "I want my life back" but to be honest I've never had that life to get back as I had chronic pain since my teenage years (in my feet) and before that was a very sensitive child and prone to ill health. I know I sound like a hypochondriac but I'm really not!!! I would so Love to have a life and do all the things I've dreamt of.
Anyway... I don't know if you can offer any gems to help me through this and keep battling on. And how on earth to get diagnosed... if this is even what I have...
Thank you x
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tinkerbell22
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Sounds like a frustrating journey - as you probably know, many of these auto-immune disorders are difficult to diagnose, not least because they present in such idiosyncratic ways.
I would imagine that your GP will be sympathetic to your wish to have a clearer diagnosis. If you have a look at the LupusUK leaflet on symptoms and diagnosis (it's on the "Home" page here), you could perhaps make some notes about the signs and symptoms that you experience to take along to your next appointment.
Then s/he might be amenable to ordering the specific blood tests that are used for lupus diagnoses. x
The following might sound a bit harsh, but rheumy appointments are so difficult to get you don't want to start off on the wrong foot!
Write down all the symptoms you have....not all the symptoms of Lupus that you have read about. By all means include any signs of Lupus, but don't say you think you have it.
When you see the rheumatologist just give him the list & go from there.
Nothing irritates a Consultant more than someone going in having "self diagnosed" & just seeing a doctor to get the meds they think they need.
By taking this approach you will hopefully get a correct diagnosis & treatment.
Hi Tinkerbelle, you poor thing, what a lot to have to contend with 😢 I'm newly diagnosed with Lupus and have my first appointment with Rheumatology in a couple of weeks time, I too have spent time going back to the GP and felt like I was wasting everybody's time then a full set of bloods were taken and threw up this Double Strand DNA etc which I googled and which in turn talked about Lupus and gave me all my symptoms, Plus some I had not connected previously. I had a flare up of something, went to docs and asked outright, could this be Lupus, to which the GP replied "that's what I'm testing for " it was amazing how much better I felt instantly !! I felt like saying "I told you I was ill" but I didn't, I just thanked her profusely. I really hope you get a proper diagnosis soon as I'm sure you will feel better as well, just putting a name to the condition helps enormously 👍😉 good luck.
To find out how lupus is diagnosed, you can download or request our free information pack here: lupusuk.org.uk/request-info...
Joint/muscle aches and pains, hair loss and ‘brain fog’ are common symptoms that are associated with lupus. It is important to remember that lupus presents differently in everybody, therefore it is rare for two people to share the exact same symptoms. You may wish to view other common symptoms associated with lupus here: lupusuk.org.uk/the-symptoms/
Although you have not had a diagnosis for lupus; around 60% to 70% of people with lupus will experience some sort of skin involvement. You may like to have a read of our guide on lupus and the skin here: lupusuk.org.uk/wp-content/u... .
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 .
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