Lupus symptoms after pregnancy: Hi all was just... - LUPUS UK

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Lupus symptoms after pregnancy

Ems666 profile image
12 Replies

Hi all was just wondering if anyone's symptoms got worse after they had a baby?

I've not yet been diagnosed still waiting for my appointment with rheumatologist but would be interesting to know how people were after pregnancy.

All my symptoms I have have became worse since having my son ten months ago

Would love to hear your views

Many thanks emma.

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Ems666 profile image
Ems666
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12 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Ems666 ,

There is a risk of flares in the postpartum period, even if the disease has been stable before and during pregnancy. It is important to seek medical attention if you experience symptoms of a flare so that your treatment can be appropriately managed.

For more information about lupus and pregnancy, we have a booklet which you can read and download at lupusuk.org.uk/wp-content/u...

Sara_A profile image
Sara_A

Hi, yes I am always at my 'wellest' during pregnancy.

After my last pregnancy 10 months ago I've have this flare. My joint pain and fatigue have got a lot worse and have been trying to get it under control.

When I left the hospital from having my baby the consultant said 'you may have a flare after the birth so get an appointment with your rheumatologist' and yes I certainly have! So restarted hydroxychloroquine with little effect, increased steroids and still not great so had to start azathioprine. It's hard enough looking after a new baby and a toddler without the pain and fatigue!

I've just started on patches for pain and today is the first time I've been able to go out and do a food shop not been up to it before now.

hootie26 profile image
hootie26

Hi, giving birth is a traumatic event for the human body. One having Lupus can and often do trigger episodes with trauma. Lupus manifested itself in me while I was recovering from an automobile accident. Good luck!

Ems666 profile image
Ems666

Thank you for your replys

I have had lupus symptoms for a good few years now but since having my son ten months ago they have became a lot worse fingers crossed I can get answers sooner rather than later many thanks emma

Sara_A profile image
Sara_A in reply toEms666

Yes hopefully u can get sorted out soon and on some medication to help u.

What symptoms are u struggling with at the mo?

It took me quite a while to get diagnosed. Started off with rheumatoid arthritis diagnosis at age 21 now 37 and had lupus and antiphospholipid diagnosis about maybe 10 yrs ago??

It's so hard cos of the multitude of symptoms u just get almost branded as a hypochondriac and end up just feeling embarrassed. I even only a few months ago began denying there was actually anything wrong with me saying maybe it was just in my head. My partner was like 'what are u on about course it's not wrong'

Ems666 profile image
Ems666 in reply toSara_A

Hi Hun.

Fatigue I'm finding very hard at the min. But also chest pain really bad night sweats joint and muscle pain mouth ulcers dry eyes and mouth headaches

And pain in neck and in between shoulder blades

I've got loads of other symptoms too but these seem to be the worst ones.

I see where your coming from with you thinking it's all in your head I'm the same when I have an ok day. I think to myself it's all in my head then it hits you like a ton of bricks again. Xx

Sara_A profile image
Sara_A

Yeah I think u just get so used to feeling rubbish.

I was so tired when I woke up this morning just could not keep my eyes open but had to get up with 2 small children! Got no choice.

The fatigue is just the hardest thing, my partner said 'did u not get much sleep'

It doesn't matter it's not about being tired its way more than that just this major uncontrollable exhaustion!

I have just started on these pain patches and feel they are helping then I don't think I feel so fatigued think the pain causes more fatigue. I was taking oral morphine but couldn't function with kids on my own X

Ems666 profile image
Ems666 in reply toSara_A

Hi Sara only just seen your post.

I'm like that I can have a good night sleep and still be exhausted when I wake up.

I also find when doing house work that can only do it short periods of time then feel like I need a sleep.

Or if I have to go into town to get a few bits I get home and I'm shattered it's bloody horrible I'd love to be able to go out for the day and not feel so exhausted and shity it's so annoying. Xxx

Jar1973 profile image
Jar1973

I haven't had a diagnosis yet, but have had symptoms on and off since I was a child to varying degrees. Yes I definitely had flares (in hindsight) after my pregnancies, and I would consider those times my worst symptoms, but I also had symptoms DURING pregnancy. I just didn't know what it was at the time. After pregnancy, my joint pain and muscle/tendon inflammation just got worse until I was hobbling and wincing everytime I moved, especially after 5 or more minutes of inactivity (which is about all I got with babies lol!). But of course like so many others, no one listened or they pronounced me as 'not having RA and therefore you are fine', and I had to just get on with it. That was a challenge with special needs premmie twins for my first pregnancy I can tell you! So YES YES YES!

Ems666 profile image
Ems666 in reply toJar1973

Hi jar1973

I've had symptoms throughout my pregnancy too but since having my son they've gotten a lot worse.

Up until now doctors have been trying to blame all my symptoms on anxiety and depression but found a nice doctor at my surgery that's finally listened to me and thinks it's more than just that.

Looking back I've had problems and symptoms on and of since I was a child.

My immune system has always been crap and I've always suffered on and off with anemia hair falling out and aches and pains when I was a child so maybe there's a connection.

Have you been referred to a rheumatologist yet? Xxx

Jar1973 profile image
Jar1973 in reply toEms666

You sound just like me! yes I am on the public wait list in Brisbane but have a private rheumy I am seeing in early Feb. too far away for me. my bloods are all normal so far which is annoying but my new GP tried me on Celebrex 20pm daily and this did help. not a cure but took the edge off. he told me to stop taking it after 30 daysand my first day off them was 6 Dec. not feeling great now! mostly I have stiffness and inflamed tendons n ligaments with occasional random aches and pains. ribpain is often worst in terms of pain. after my pregnancy it was worse than I have now so I am pretty dang grateful for that!

Glad someone is listening to u. a rheumy and or immunologist is essential I think.

Ems666 profile image
Ems666 in reply toJar1973

Well I was referred the end of August September time and still waiting for an appointment I keep phoning hospital every week but still no joy.

I've not yet had any bloods taken for lupus as of yet doctors are leaving that to the rheumatologist.

But having regular iron levels and vitamin d checked as I have problems with both.

I've now been told that my iron is ok but my iron stores are low also low calcium so doctors have ordered more bloods to be taken to check to see how much iron is in my body it's never bloody ending this has now left me wondering if this is linked to lupus at all

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