LUPUS UK
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Can Lupus come on suddenly?

Hello all,

In March of this year I started experiencing joint pain, restless legs, heart palpitations, abdomen pain, gastro issues(diarrhea) and since May I have had swelling and tingling in my hands and pain in my wrists and knees.

Lately the pain has been in my arm muscles, pelvic area, and I occasionally get rib pain, heart palpitations and mouth sores/hair loss. Some days Ill feel fine others I'm sore and fatigued. I've also had swollen lymph nodes and rashes that come and go.

Does this sound like Lupus? I went to a GP a few weeks back, he ran a CBC and said I was fine and just had anxiety.

Should I see a specialist? Thanks for your help!

17 Replies
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It does sound like you could have Lupus. I don't know if it can come on suddenly as I suffered for years before I'd even heard of Lupus, even then I didn't know enough about it to realise that's what I had. When I left college and started work I could never work out why by the afternoon I was wiped out. Or why at lunchtime I would go home and fall asleep.

Took me 7.5 yrs to get diagnosed with Lupus. Don't let the doctors fob you off as you need more than one set of bloods to get it diagnosed. My first doctor basically told me I was a hypochondriac. It wasn't until I changed doctors and had a lovely junior Dr who listened and took me seriously that I got help. It still took another year to get it diagnosed and see a rheumatologist. My local one wasn't much help so I now go to Guys Hospital in London. A bit of a trek but so worth it.

Keep going back to the Doctor and tell them you want to be checked for Lupus. If you don't find them helpful then ask to see another one or change practice if you can.

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If you can understand this article (bit technical):

medscape.com/viewarticle/58...

it mentions "acute onset lupus" as how younger patients start with lupus relatively quickly.

But there isn't that much a GP can tell from a CBC! So I think I might see if I can see someone else to discuss it all a bit more sensibly! And a referral to a rheumatologist would be a good idea - as your symptoms DO suggest there is probably an autoimmune disorder of some sort going on.

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I think you need a medscape account to view the paper?

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Hadn't thought of that - of course I have one! But you can sign up free I'm sure - and it is a very good site for real intfo.

But here's the paragraph I meant:

"In contrast to patients with younger-onset SLE who tend to develop the disease in a relatively short time period, the so-called acute-onset lupus,[36] older patients are more likely to have an insidious presentation, which implies that certain time elapses from the first manifestation or ACR criterion until the diagnosis is made or four ACR criteria are met;[13] this interval has been reported to vary from 5 to 60 months.[10,13,17-19,21,24,41] Thus, late-onset lupus patients have a fewer number of ACR criteria for the classification of SLE than the younger-onset patients at presentation. Atypical presentations, nonspecific manifestations, concurrent disease and the fact that SLE is thought not to occur in this age group may contribute to a delayed diagnosis, while true insidious presentation is also more likely to occur in these patients."

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Grrrr, that makes me so mad. So many GP's and in fact doctors of all specialities are far too quick to put everything down to anxiety and want to pump anti depressants into you. I've lost count of the times I've been told to "see a therapist" and talk through why I'm depressed, anxious etc and given a prescription. If doctors actually listened to us they could learn so so much more than they could ever learn from a medical journal.

Hope you get to see a Rheumatologist soon.

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Wait until you are older ;-) Then it is depression or "your age"

If you have been ill for months, even years, of course you are going to be anxious or depressed - chronic illness does that to anyone!

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I know what you mean. I had a doctor tell me that I had nothing wrong with me but anxiety. That if I thought it anything else he couldn't help me. Said I needed Meds and therapy. He was a GYN MD. Which made me even more frustrated as he just brushed off women as malingerers. I had been a nurse for about 30 years at that point. Don't ever let anyone tell you that there is nothing wrong when you know that there is. Physicians are fallible humans and we need to be our own advocates in this journey. There is my rant for today😁

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Must have been delightful having a baby with him as attending...

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Hahaha No I only saw him once then fired him. Take care.

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Phew - relieved to hear that!

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You have some great answers above. You cannot rule out autoimmune disease based on a CBC, and any GP who thinks this was enough to dismiss all of your symptoms clearly will not be very useful to you. I hope you can find a new GP who is more knowledgeable and less dismissive, and referral to the correct specialist. There are a number of things he could have tested you for, for example thyroid issues or vitamin/mineral deficiencies, etc., in addition to autoimmune disease. Only further testing and evaluation will give some clues as to what is going on. Good luck!

Here is a website which explains various blood tests for lupus:

hopkinslupus.org/lupus-test...

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Thank you for all the replies. I forgot to mention the GP did rule out diabetes and thryroid.

My insurance will kick in in January so I will definitely be seeing a rheumatologist then. Not sure how long is okay to wait. Last night my rib and collarbone pain was so terrible I couldn't sleep! Also, I know its vain, but I miss my old weight and my hair not being brittle.

I'll be 32 next month. At what age were you diagnosed?

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Hi Lorensingstar9,

We are not medically trained and will be able to tell you whether this could be lupus or not. Many of the symptoms you have listed are common in lupus, although they may not be exclusive to the condition. It is certainly worth seeking a specialist opinion and further investigations. A CBC can potentially show signs of lupus and be useful for monitoring the disease, but more specialist tests are required for a diagnosis and it certainly doesn't rule it out as a possibility.

If you need more information about the specific blood tests used in the diagnosis of lupus, you can read more in our factsheet here - lupusuk.org.uk/wp-content/u...

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I didn't think anyone here could "diagnose" me, I was more coming to vent as everyone in my life thinks I'm imagining it as I was well for so long and this year I've been constantly ill. I was looking for support from people who have 'been there'. That is all.

Thankyou. :)

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If I can offer any advise it is to listen to your body and keep a journal about how you feel both physically and mentally. You should also see a Rheumalogist as soon as you can. The journal will give a more complete picture to your doctors and specialists. They are the experts in Auto Immune diseases. Keep on this website and learning. You will learn you are not imagining this nor are you crazy. Hope all works well for you. Hugs.

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Thankyou abby1649!

I'm glad I'm not crazy. Appreciate the hugs and support.

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I hope everyone had a great Christmas. I saw another GP and they agreed to do a ANA.

Hopefully Ill have answers soon.

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