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Lupus Flare-Struggling With Pregnancy :(

Discussion in 'Living with lupus' started by mooks, Aug 17, 2010.

  1. mooks

    mooks Registered

    Hey my lovelies,

    Well I am now 28 weeks pregnant-woo! All the midwives have been congratulating me on getting so far with SLE which is sweet!

    However, LUPUS FLARE!!! It's been soooo bad for the last two weeks, really painful EVERYWHERE (muscles, joints, ligaments, tendons, skin, ribs), feel like I have flu, no appetite, glands up, mouth ulcers, all know these symptoms! My back and hips are so bad I can barely walk and definately can't sleep (think this must be a combination of pregnancy aswell as lupus).

    So at my obstetrician appointment yesterday she said there's not much they can do apart from put my steroids up again (currently on 20mg) but she won't do that until she has established its a lupus flare and not just general pregnancy aches and pains! Is she mad?!?! I know what a flare feels like and if everyone felt like this when pregnant no one would have babies!

    And basically she said "its JUST achey joints" it isn't life threatening like it would be if it started to affect your kidneys" (which are holding up so far this time as urine NAD) basically I'll just have to deal with it....She is really nice but it seems she has no sympathy or understanding of how it feels when your lupus flares :(

    I am seeing my rheumy on monday so he might be more sympathetic as he actually understands its more than "just achey joints" and am seeing them at st thommies next fri...but who knows..ofcourse I want whats best for my baby but she is a good size already and I would really like it if they could offer me an early induction say at 36 weeks or something so I have something to aim for..I feel terrible I really don't think I can cope with going full term.. :worried:

    Sorry to come and moan just need some support from people who understand :sad:

  2. greenhaggis

    greenhaggis Registered

    Hi Mooks,

    Popping in quickly as I'm on hols!

    Now pain in pregnancy can be excruciating, yes to the point of never wanting to ever get pregnant again....and thats just the pregnancy - that's how it was for me 5 times over lol.

    I was bedridden, could hardly move, walk due to major pain...vomited the whole 9 months of each pregnancy, constant flu symptoms, headaches and sinusitis (pretty much like now) flash though i then did not have diagnosed Lupus and did nto now why I was feeling so ill through them.

    You will get through it, somehow...perhaps the extra pred would be good. I no that I was so at my worst emotionally during one pregnancy that I wished I was not alive...pain was that bad, so please don't let things get that bad for you!

    I suppose the bonus for you is they are totally aware you have lupus, so pains could be that...if the increase in pred works then thats what you need ans trying it is the only way to find out.

    How on earth any specialist can say or tell that your pain in pregancy or lupus or both.....ask them to answer that question - just saying that you kidneys are okay is not enough (good that they are okay), but your pain is your main issue at moment and they need to get to grips with it real soon in my opinion.

    As to being induced I begged and begged to get induced early every time, as I was in tears every day from about 30 was ****! The answer was it it not a medical emergency so 'NO', unless the baby in in danger then you have to go to term....or unless you go pre-eclamptic. The earlies I ever got induced was at 40 weeks on the dot...had to pre-book this though at 38 weeks!

    Perhaps with having Lupus you will be able to control the day/time when you deliver differently...I hope so!

    Take care and get some extra pred if you think it will help...don't always go by what they want, its your body and a happy body makes a happy baby (LOL).

    Off back to my holiday now!!!
  3. countrylass

    countrylass Registered

    Hello Mooks.
    genlte hugs,well thats not good enough......grr id ask same as mentioned above.
    do so hope it settles more for you shortly. thinking of you. wow 28 weeks.
    lv countrylass
  4. Katharine

    Katharine Registered


    I can't add any more really to what's been said so just sending some pain soothing hugs :grouphug2:

  5. keebler

    keebler Moderator

    Hi Mooks,

    I just wanted to send you some nice soft gentle hugs your way.:grouphug2:

    Well done getting to 28 weeks.:thumbs:
    Get plenty of TLC.
  6. Lupo30

    Lupo30 Registered


    Just wanted to say, get plenty of rest and look after yourself. Speak to your rheumatologist and perhaps he can speak to your obstetrician on your behalf and tell her that it is a flare and not just pregnancy, then things will ease for you. Well done on getting to 28 weeks. Keep us updated - we all love to hear your news.

    Take Care

    Lupo30 xx
  7. ElephantEyes

    ElephantEyes Registered

    Hi Mooks - I've no useful advice, but I'm glad you posted to keep us updated. I hope your rhuemy helps.

    Take care, Nellie
  8. dizzyV

    dizzyV Val

    Just wanted to tell you that I hope you get some relief soon. Do hot baths work at all, or a heated rice bag thingy if you can't use a heating pad for your hips? My hips and back are the worst part of my pain. I'm not pregnant, but I do know that sometimes it's all i can do to stay upright and walk.

    HUGS:grhug: for you and congrats on your baby:congrats:, just think how happy you will be when that bundle of joy gets here!! :) It will be worth it, in the end. it's the moment that sucks!!

    Take care of yourself and be kind to your body, maybe DH can give extra massages too. :) Have you considered having a massage, some therapists are experts at pregnancy massage. i'd check around, it might relieve some of the aches in your back.

    :goodvibes: good vibes coming your way!
  9. mooks

    mooks Registered

    Awww thanks Val, Stew h yas been rubbing my back for me lots actually he is really good and also I am def going to treat myself to a mum to be spa day! I am very jelous of your dog by the way!!!!

    I found out today my B12 and Ferritin and all the other HB and red blood cells are low today so I have to have infusions of iron every other day for a while...thats gonna be fun!! but i can imagine i should feel better once im not so anaemic!!

  10. Maia

    Maia Registered

    Hope you're feeling better soon Mooks! The hip pains/back pain could very well be due to the pregnancy but I doubt the other pains are... I think what your doctor was suggesting that since your baby is doing so well, and your major organs are also holding up well... that the benefits of going on additional medication to treat pain may *not* outweigh the risks.

    I think they likely will offer you an early induction but that all depends on how you are doing. I went through a rough couple of weeks but then at the very end felt very well again and could have gone on an additional week easily I think. ;)
  11. natbat

    natbat Registered

    Hello Mooks,

    Congrats on your pg and getting 2 28 weeks.

    I have not offically been dxed with Lupus at the mo awating test results but i felt ext how you discribe during all of my pg and flared quite alot. I was dxed with FMS (fibrio) during my second pg, but like most people with FMS i never went into remission during pg's which is one thing i hated.

    Sorry to hear your obs is not being so understanding about the pain. hopefully your rhuemy can get it sorted out for you.

    I have an underlying back problem and had sevre SPD when i was pg and ended up on crutches and house bound in my last pg for 25 weeks expt for doing school runs that i had to and attending app that i needed to i was stuck at home.

    I was offered some painkillers while i was pg, but being a neonatel nursery nurse and knowing the affects the painkillers i was offered can have on babies i juts had to grin and bere it. I was delivered at 38 weeks with all my babies, but more due to my obs history as i sadly lost my first daughter to a congenital condtion. I think they are more likely to consider induction at 37 + weeks as that is classesd as term. Though most babies do well at 36 weeks some under 37 weeks can struggle. In the hosp i work in a baby born under 37 weeks had its blood sugar and temp monitored for a min of 48 hrs but it varies in diff hosptials.

    Gosh my hb etc always troubled me when pg and when not i have monthly b12 inj anyways but my ferritten hit rock bottom when i was pg and needed to be topped up by infusion at 36 weeks.

    hope you feeling a little better... (((((((()))))))
  12. mooks

    mooks Registered


    I am now 34 weeks pregnant!! All going well..apart from the umbillical cord has high pressure in it so i have to have scans every fortnight but its great as i get to see my baby girl lots! I feel awful with the lupus playing up and things but at the end of day my baby will be here soon so I can put up with it!

  13. debatat

    debatat Moderator

    Congrats!!! That is great news, hope all goes well for you!
  14. ElephantEyes

    ElephantEyes Registered


    Delighted to hear you are at 34 weeks Michelle!

    Take care, Nellie
  15. Katharine

    Katharine Registered

    Thanks so much Michelle for the update. I think we all get nervous for all the lupus mums out there during their pregnancy. So happy to hear that things are going well :eleph:

  16. Maia

    Maia Registered

    Awesome! I'm so happy for you and will await your "she's here!" post!
  17. keebler

    keebler Moderator

    Great news Mooks 34 weeks and counting. :yahoo:

  18. countrylass

    countrylass Registered

    :)your doing so so well Mooks.

    good they doing extra scan keeping close eye for u and baby,gentle hugs sorry your lupus misbehaving.

    34 weeks wow and counting.
    il be away when your due i think so il check when i come back.
    ps we tryign for baby now.
    so so much thinking for u and baby of a succesful pain free time ahead.

  19. BigSis

    BigSis Registered

    Hey I make this 35 weeks now

    Hope things are still good Mooks....not long now.
  20. cally

    cally Registered

    So glad to hear that you are doing well, hang in there not long to go now! Make sure you are getting a lot of rest, cups of tea and feet up!

    Take care, Cally xx

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