I was diagnosed with mild lupus in 2014

[julie1970]

Very first went to the doctor's feeling very tired lots of pain in my arms and legs rash all over my body when I was exposed to the sun.

Doctor very good do I see recognise the signs what number blood test and checks with the rheumatologist.

Recently haven't had any problems but now I'm experiencing a lot of palpitations puffiness in my face and legs feeling extremely tired I still work but I have to cut my hours down due to the extreme tiredness suffer from headaches blurred vision I just recently found out my cousin also has been diagnosed with lupus.

[favour6]

Hi Julie, it's good that you have a good rheumatologist that is doing all the necessary bld test. All these are symptoms of lupus flare. It will be wise to start medication for lupus if you have not started

Unlike mine, I was having symptoms of tiredness on and off for years, without realising it to be lupus. I was energetic most of the time . Even had hair loss with scalp scars & skin discolorations in the ear& legs. Wasn't given any treatment until I've now other organ involvements.

Hope you get help fast.

[julie1970 in reply to favour6]

Hi there i'm worried about starting medication for my lupus they seems to be alot of side effects with the medication for lupus want are the benefits to to taking the medication.

I seem to just wait for the flair up to pass then i'm ok for a few weeks but the tiredness seems to be staying with me.Longer now.

[Purpletop in reply to julie1970]

Each time you have a flare there is internal inflammation and damage to your organs, glands, blood vessels, etc. The medication aims to minimise the number of flares (thereby reducing inflammation and damage) and reducing the severity of the flares.

Without meds there will come a point when your body will start to suffer so much that you'll feel as if you've been hit by multiple disparate symptoms at the same time. By then it might be too late to repair damage done, so even if you start medication then, some effects might remain for long time afterwards.

Don't underestimate this disease - our immune system is a powerful thing and when it uses that power indiscriminately, it is a force to be reckoned with!

And the term "mild" doesn't mean low disease activity - it means no organ is being attacked. But the disease is unpredictable, no one knows what it will decide to attack next.

No one wants to take these drugs and rheumatologists tend to start very small with the least potent drug and see if they can avoid going further. But this disease is progressive - which means it will continuously go on. So at some point you'll need those meds anyway.

[LUPUSadmin]

Hi Julie,

Welcome to the LUPUS UK community! I'm pleased that you have a good doctor and that you're doing relatively well. I'm sorry to hear that your cousin has also been diagnosed with lupus.

We've got a number of resources available for you to use. If you'd like a free information pack then you can download or send off for one here: lupusuk.org.uk/contact-us.

Additionally, we have a wide variety of publications about lupus for you to read that might help you. We have a factsheet called 'LUPUS: The Heart and the Lungs' that could be of interest to you regarding palpitations. We also have a number of booklets that offer information on your working situation and how your employer can help you at work.

George

[denise4]

Hi, I'm new on here and wondered what other early symptoms you had. I am not diagnosed but Lupus runs in my family, one uncle passed away and another uncle was recently diagnosed. I have had joint problems off and on, my arms and legs go numb randomly half of my body (left side) went numb during sleep and got up to walk and my legs gave out, i have been sick repeatedly laringitus, flu, cold in a matter of 3 months, after laringitus I developed breathing problem which my doctor diagnosed as asthma. I cannot excersize without having an athsma attack sometimes when I'm resting I begin coughing non stop until I use my enhaler. I have had HORRIBLE migraines as long as I can remember. My eyes are sensitive to light. I don't have any rash though. I recently have been seeing my doctor and I'm scheduled for an ultra sound because of pains on my mid and upper left abdomen. Do my symptoms ring any bells with anyone coping with lupus?

[baba in reply to denise4]

Have a read on here:

hughes-syndrome.org/

healthunlocked.com/hughes-s...

[julie1970 in reply to denise4]

Hi there it's a good chance you have got lupus it does run in families my cousin has got lupus too. my doctor told me when I was told I had lupus that it runs in families and some else in my family may have lupus then 6 months after me. my cousin was diagnosed too. you need to get your doctor to do some blood test to check and a good rheumatologist. I get very sensitive eyes very tired too my hair fulls out alot too itchy skin pain in my fingers and feet I so have Ryman's too in my fingers and before I get a flair up it seems to start with get palpitations and head aches I don't always get the rash my face start to puff up hope this helps you. But you really need to get a rheumatologist who knows about lupus. I never knew about lupus before I was diagnosed my doctor was looking for Ms when I got diagnosed then he said I was clear but iv got lupus but didn't have a clue about lupus then.

[Tinky52 in reply to denise4]

Actually your symptoms are identical like mine...exactly!! Pain, cough, laryngitis and my Dr said I had Asthma and gave me pro air which helps a little cause he said I also had bronchitis . But the antibiotics don't work. I'm also Diabetic type 2 but I'm not on meds and eat what I want. I had pain in my upper abdomen and found out it was my gallbladder which I had 12 stones in it. They took it out and I still have problems. I hope you find answers to your question. I just couldn't resist to tell you that I'm in the same boat as you!!!!! xx

[denise4 in reply to Tinky52]

Wow! Pretty similar! Do you have a Lupus diagnosis? I'm currently waiting on results from an ultra sound, blood tests, and urine. Was your asthma sudden or had you always had asthma? I noticed mine started right after the Laringitus. Did you ever have issues with your kidneys? What was the pain in your abdomen like and where? My doctor thought maybe my asthma was due to lack of excersize but I am 5.4 and weigh 135 and I am 24. I am very active or was before I started feeling so crappy. I also run around after my 2 kids. I do feel like my Doc has began taking me very serious which I appreciate. I just wish results didn't take forever. :/

Thank you for not letting me feel crazy over here and sharing your story

[lonelyone in reply to denise4]

Yup! and more..ox

[denise4]

Thank you so much for responding. I spoke with my doc today and she scheduled me an appointment to discuss my new symptoms and test my urine and blood this friday. Hopefully I will get some answers soon!

I am very sorry for what you are going through. I apriciate you reaching out and telling me your story.

Did you ever experience any trouble breathing? I do get itchy skin but no rash.

[julie1970]

Good luck 🍀 keep me up-to-date.

I had to alot of blood test over a couple a week i had so many blood test. my rheumatologist said it's not a quick test to get the right results.

I was also get alot of urine infections

at first too.

Julie x

[denise4 in reply to julie1970]

I recently have been having very cloudy urine. I started drinking more fluids but its still pretty yellow and feels uncomfortable when I pee. I will definitely keep you posted! Also did you ever experience numbness in your limbs?

[julie1970 in reply to denise4]

Few Years ago I used to suffer with numbness in my arms quite a lot but it was only when I was in bed. but I got a memory foam mattress now. I'm not sure if the numbness was anything to do with my lupus

That is the only time I really use to get numbness.

[Freckle1000]

Could you all make sure your Doctors check your Kidneys just to be on the safe side.

[denise4]

Do any of you experience extreme fatigue and shortness of breath when simply trying to eat? My appetite has decreased but when I do try to eat I'm exhausted.