lupus or not

[Rachbyc]

Hi I have a had unexplained symptoms for years which I think could be lupus ( i was a nurse on a rheumatology ward) I get swollen and sore joints I have low vitamin D I get mouth sores not ulcers they’re sores I get tingling sensation on my face / head my glands get sore and I feel like I’m coming down with something. I have low Bp 100- 79 I have leukocytes in my urine all the time I’ve also had bouts of trigeminal neuralgia and feel very lethargic I have problems with my sinuses also and sometimes get sores in my nose I do have a strange rash but it’s either side of my neck just under my ear there all the time ( thought it was much but scrubbed and it doesn’t go)gets worse when I’m warm I also sweat a lot how do you ge a diagnosis I hope it isn’t

I’m 51 post menopause help

[NewLupusdiag]

The best thing you can do is go and talk to your doctors and ask them to do an ANA blood test. It’s not positive for all lupus patients but the majority will have. Positive test.

Write down your symtpoms and Explain them all

If you’re post peri-menopausal then these are not menopausal symtpoms

A lot of what you have said were also my symtpoms

The good news is …getting a diagnosis is not a bag thing in fact my life hasn’t changed since I did. I used to worry about my symptoms and now I know what’s causing them so I don’t have to worry about anything sinister

Getting a diagnosis is really just validation of what you seem to feel already

I’m not currently on medications

My joints are sore sometimes but they have been for a few years I can still go out in the sun and now I just mind myself more not letting myself get fatigued is main thing

Start with the diagnosis and really just kind yourself

[Rachbyc in reply to NewLupusdiag]

I had a bloods test with rheumatology about 9 years ago for swollen joints but no problems found but a lot of these symptoms have progressed over the last 9 years I forgot to say I also can’t be in the sun for more than 2 days (I mean hot sun no too bad in the uk unless it’s really hot but I don’t really sit out on in it.)as I get a burning rash all over . I’ve also had keratosis in my eyes that was grade 3 no idea of the cause I do get like pain in my eyes with tingling grazed feeling on that side of my face could be trigeminal neuralgia though.

[MusicalFurbaby]

Hi Rachbyc, I have a lot of similar symptoms to you, not all of them but I too get the joint pain, mouth and nose sores, fatigue and rashes. I’d suggest keeping a record of all your symptoms, including any known triggers, as this will come in handy when you see a rheumatologist. Are you still working? I’d recommend getting a rheumy referral from your GP, and be aware the rheumy will probably refer you to other specialists as well—as a nurse you probably know all this already! Try and take it easy, take care of your body, while you’re waiting to see a doctor and rheumy. You would know about waiting times etc. for rheumatology, so it’s important to rest and listen to your body and be kind to yourself. We’re here for you x

[Chantev]

Hi Rachbyc

You have just described my scenario over my past 20 years. I was diagnosed with Lupus some 40 years ago it was hard to manage Lupus and a very demanding job. Am now retired and for the past two years my lupus has become quiescent as my rheumatologist describes it. I have weaned nyself off hydroxy and only have thyroxine and vit D. Must say am feeling better. I wondered whether if I had Lupus or was it sign of menopause. I was diagnosed when I was 40 and stopped my periods when I was 45. So I shall be following your posts with interest for any development.

Best wishes and look after yourself.

[Rachbyc in reply to Chantev]

Oh interesting my menopause started at 38 and finished by 44 still have a hot sweats here and there but not as bad x

[Paul_Howard Partner LUPUS UK]

Hi Rachbyc ,

I am sorry to hear that you've been experiencing these symptoms and, as yet, do not have a diagnosis to satisfactorily explain their cause.

I see in the comments that you had some investigations with rheumatology, but that was a long time ago. Are you still under rheumatology, or have you been discharged?

I think it is worth discussing your symptoms with your doctor and requesting some investigations and/or a referral to rheumatology.

We have an article on our website with lots of guidance and information about getting investigated for lupus. You can take a look at lupusuk.org.uk/getting-diag....

I hope you get support from your healthcare professionals in getting an explanation and some treatment for your symptoms. Please keep us updated with how you are getting on and let us know if you have any questions.

[Rachbyc in reply to Paul_Howard]

Hi I’ve never gone back to the doctor let alone the rheumatologist since posting I feel a fraud Ingad a bad chest infection which resulting in cracking a rib steroids antibiotics never actually ecrayed but I’d done it before and my description matched the doctor said. Took months to get over. I have been diagnosed with spontaneous angioedema and uticaria as I get rash and swelling under/around my eyes and once in my throat which the Gp at the time thought might have been an allergy I am wandering if this is all linked I was told that the spontaneous angioedema uticaria is thought to be an auto immune issue doesn’t explain all the other symptoms x I never even into other bits as he was an allergy specialist .