Lupus

[Butterfly2020]

Hi everyone, I am new to the site! Yesterday my blood test results came back and the GP advised me that they think it may be indicating that I have lupus and that I am going to be referred to a rheumatologist for further tests etc.

I must admit I nearly fell off my chair! I am 32 and have a one year old little girl. Before my little girl was fit and well, and since having her I've lost two stone (which I put down to breastfeeding) , felt very exausted (which again I put down to being a new mum) had some fluy episodes which i put down to being run down and returning to work (in a hospital) and some skin pain which was on and off, I've always had bad circulation. I don't really have any other symptoms. Reading symptoms online has made me feel a little terrified and also that I don't necessarily fit into the typical symptoms no rash, burning joints etc- I think I feel like I would know if I had a health condition, but perhaps I have been so busy that I wouldn't.

Has anyone here been diagnosed following childbirth or only had a few symptoms? Any advice greatly appreciated, few weeks wait untill my next tests and feeling quite apprehensive - thank you

[Hidden]

Hi Butterfly, I don’t have any advise as a new mom (I’m an old mom!) but I just wanted to wish you the best, and tell you to hang in there. First, there is a possibility that it’s not Lupus, but rather, one of the Lupus like symptoms. Second, if it is Lupus, stay strong. You’ll learn how to manage it. It won’t be quick and it won’t be easy, but you can do this!! You will come out stronger for it.

[Barnsey85]

Hi butterfly

I was only 32 when I got diagnosed with lupus SLE and fast forward 2 years on consultant can’t get my condition under control cause constantly flaring up.

Just stay strong if you got it cause you gonna need it with all the support from your friends and family good luck.

[TM1970 in reply to Barnsey85]

I was 39. Vasculitis 37. X

[Apricot100]

Hi, yes a few years after giving birth I was diagnosed. I didn't quite believe it either as I just get on with things and apparently have a high pain threshold (going for a run with eldest daughter while appendix was about to burst unknown to me - I thought I had a slight stitch!)

It is a hard diagnosis to adjust to and forever changing, evolving or sometimes disappearing. Some days I think I'm a fraud I don't really have lupus, other days I can only manage 2 hours upright before staggering back to bed. Take it easy, get to know your lupus as best you can and NEVER feel like you're fussing about nothing. Xx

[F1zz]

My symptoms started after my first daughter was born. It took 8 years for my diagnosis. I didn't have every symptom and still don't. Symptoms seems to fluntuate and change. It took me so long as I assumed it was down to being a mum with two under two, then a working mum with a stressful job(teaching) so much so I left my career and continued to get ill. Then a finally had enough and demanded a referral to a rheumy. I've been on my meds for 8 months and have my career back and feeling myself again. Yes it's scary but there is help and support x hope this helps

[Butterfly2020 in reply to F1zz]

It does thank you for taking the time to reply. Perhaps I have been lucky with a pro active gp, I only went for the first time 3 weeks ago, had my blood tests and then got told I am getting more tests and a referral to a rheumatologist it's seems to have been so quick. I think what I am struggling to understand is that I feel I can account for my symptoms, (I too have a very busy job in the NHS, feel like I should know more about lupus but my patients have always suffered very severely therefore I didn't ever consider I could have it) but my blood test is showing otherwise hense why I felt so shocked. I don't know whether blood tests are very definitive or whether they get false positives. Pre pregnancy I was always a healthy 10 stone but now I'm only 7.5 stone despite being 5ft 7" that it the one symptom that did worry me as I eat all day long, seems like a complex condition x

[Roarah]

I had kidney issues and at 27 was diagnosed with lupus. Responded very well to treatments. Had a normal pregnancy at 36 and then had multiple miscarriages after that first pregnancy so my specialists believe my pregnancy may have activated my disease again. I also do have Antphospholipid antibodies with my SLE.

[Aeam487]

Hi, I am also 32 and have a one year old girl. Like you before her I didn’t have any problems but am seeing a rheumatologist tomorrow because of blood results. I originally went to the doctors with extreme tiredness and stiff joints in my hands. These symptoms have now progressed into actually pain in my joints. I don’t have a diagnosis yet but sound quite similar to you. Will see what the rheumatologist says tomorrow. X

[Butterfly2020 in reply to Aeam487]

Hope it goes well for you, if you are happy to share please let us know how you get on x

[Aeam487 in reply to Butterfly2020]

Hi saw a really nice rheumatologist this afternoon. She suggested I have an autoimmune disease possibility lupus especially as I have a family history of lupus but doesn’t want to diagnose until she is sure. Wants me to go to the hospital on Thursday morning for more extensive blood tests and a chest X Ray. Will then decide what they can do for me. Hope you manage to get some answers too. X

[Butterfly2020]

Thank you everyone for talking the time to reply it's been really helpful to hear you stories and gather more information x

[Chanpreet_Walia LUPUS UK]

Hi Butterfly2020,

Welcome to the LUPUS UK HealthUnlocked Community, we offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

Lupus can be triggered:

• at puberty

• during the menopause

• after childbirth

• after viral infection

• through sunlight

• as a result of trauma

• after a prolonged course of some medications

Lupus affects each individual differently and no two people share the exact same experience i.e. one person may experience skin involvement whilst another may not. The number of symptoms one may experience and for how long, also varies. To find the specific tests and criteria that are needed in order to make a diagnosis of lupus, please read our blog article at lupusuk.org.uk/getting-diag...

Flu-like symptoms, extreme fatigue and weight loss are all symptoms associated with lupus. We published a number of factsheets on lupus and certain symptoms which you may find helpful to read at lupusuk.org.uk/publications/

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best!