Pregnant with lupus and fibro

[SarahCourtney]

oh god yeah my fibro was pretty much bad to begin with with very poor mobility, but since about 12 weeks it flared up to the extent that i just dont have any good days at all, but when you live with it every day you kinda get used to the aches and pains ect the struggle is the problems it caused with my pelvis, i went to see the physio due to having SPD and pelvis kept moving out of place due to muscles softening up very very early on ( about 16 weeks) but the last time i seen her thinkin i needed my pelvis shifted manually back into place which is what i had to get done regularly) i got told there was nothing she could do for me as the fibro has actually caused the muscles holding my pelvis together to just give up giving me no control at all from the waist down,hence the wheelchair now,but i'm on baby number 5 so doesn't mean everyone will have same problem with fibro just i was unlucky enough for things never to have healed from last baby unfortunately, if you start to feel the aches and pains at any stage see the physio straight away and make sure you get every bit of help as soon as you can like support belts even crutches if it helps take the weight off in later months it will help alot and dont be ashamed to pester them as often as you need to

Thanks hun, I certainly will. I need a wheelchair often now because I can't manage too much walking without pain. I shall definitely be harassing every available doctor I can to help me get through all of this.

Out of curiosity, and this is a question to anyone, did you find that labour was truly horrendous or because you are used to dealing with chronic pain, you could take it more in your stride?
My theory with labour is that most women have never experienced intense pain over a prolonged period of time and that's why it's so awful for so many. Does that mean we have a slight advantage as we are used to agonising pain for hours/days on end? Or does it make it worse because we have flare up pain on top of labour pains? X

 

[meridian]

think it solely depends on each woman's flare up's, but yeah it can make a difference having to deal with it every day and depends on your pain threshold, mines it pretty high now compared to how it used to be and with my last kid i managed to go through the whole birth normally with nothing more than gas and air it was more the fatigue that really kicked my ass tbh lol hard to keep going when you just keep falling asleep through the pain and they cant wake you up but after 18+ hours you can't do much more than just lay there exhausted. So to me i found it gave me an advantage but i think more the fact i didn't know at the time i had it as was suffering the symptoms but wasn't diagnosed fully till right after having her, This time round I'm aware of the fibro so it brings more the fear of going through labour than it did before,but i think majority of it is just that....fear more than it actually getting unbearable.I think we're a lot tougher than we give ourselves credit for with having the practise of dealing with it day to day.But make sure you have all options available at hand for pain relief just incase it does get to much for you, i was offered an epidural option yesterday when i seen the anaethetist but with my fibro i found pain relief never fully works, so was a complete waste of time, so again depends on yourself and what levels you can cope with

 

[Cazzie11]

Got an appointment with my doctor on Monday to discuss my rhumatoid arthritus and will be asking whether it might've contributed to my miscarriage. Will let you guys know what happens. I almost want them to say that it might've so they can do something like take aspirin everyday as I know you do Sarah. It's been horrible thinking something so simple could have helped me. If I do get pregnant again, at least I'll know I'm high risk as I didn't know that before.

 

[SarahCourtney]

think it solely depends on each woman's flare up's, but yeah it can make a difference having to deal with it every day and depends on your pain threshold, mines it pretty high now compared to how it used to be and with my last kid i managed to go through the whole birth normally with nothing more than gas and air it was more the fatigue that really kicked my ass tbh lol hard to keep going when you just keep falling asleep through the pain and they cant wake you up but after 18+ hours you can't do much more than just lay there exhausted. So to me i found it gave me an advantage but i think more the fact i didn't know at the time i had it as was suffering the symptoms but wasn't diagnosed fully till right after having her, This time round I'm aware of the fibro so it brings more the fear of going through labour than it did before,but i think majority of it is just that....fear more than it actually getting unbearable.I think we're a lot tougher than we give ourselves credit for with having the practise of dealing with it day to day.But make sure you have all options available at hand for pain relief just incase it does get to much for you, i was offered an epidural option yesterday when i seen the anaethetist but with my fibro i found pain relief never fully works, so was a complete waste of time, so again depends on yourself and what levels you can cope with

Wow thank you, that was so helpful!!
Yeah I won't opt for epi because I think it's just going to hurt my back for days later which is unnecessary further suffering. My friend who said it didn't work for her as pain relief anyway and she is perfectly healthy normally so not sure it's worth the risk frankly.

I have a high pain tolerance but have been a baby so far with this pregnancy. The morning sickness and the pain is just making me miserable but I also know it's largely hormonal affecting my moods at the moment so trying to stay positive about the rest of the pregnancy after trimester1.
I just know with the flare ups that land me in hospital it often feels unbearable and I can't imagine that pain on top of labour pains! But then I am used to taking in has and air to a point I'm on a different planet and can't feel anything so... Fingers crossed lol

 

[SarahCourtney]

Got an appointment with my doctor on Monday to discuss my rhumatoid arthritus and will be asking whether it might've contributed to my miscarriage. Will let you guys know what happens. I almost want them to say that it might've so they can do something like take aspirin everyday as I know you do Sarah. It's been horrible thinking something so simple could have helped me. If I do get pregnant again, at least I'll know I'm high risk as I didn't know that before.

Sorry about your miscarriage hun. It very well may have been down to the RA but there's no definite way of them telling.
Loads of places give out baby aspirin to pregnant women as standard and there is research to show that it greatly reduces the risk of a second miscarriage if taken during time of conception and in the weeks after. Google it - it's very interesting actually and so far so good with me!

 

[Cazzie11]

Hey guys! Just to let you know my doctor doesn't think people with RA have an increased chance of miscarrying but he's sending me for some blood tests to see if it shows up anything. It's hard as people with the condition are usually a lot older than me! (I'm only 30!)

 

[SarahCourtney]

That's good to know hun! Hope you're doing well otherwise? Xx

 

[Cazzie11]

I'm doing well thanks Sarah, just getting back to normal, seems like I was never pregnant! We've actually just accepted an offer on our flat so I've got the huge project of moving house soon (that will keep me occupied for sure!) I'm bleeding a little bit but should be finished soon, can't wait to get trying again! Although my doctor says to wait 2 cycles but another doctor said I could try as soon as I feel ready! I don't think they really know. If it's meant to be it will be!

 

[SarahCourtney]

Hi ladies,

How are we all doing?
I've got my first consultant ap at the lupus clinic in St Thomas' London next week. Already had my midwife ap and had my first scan and thankfully so far everything is normal.
Been in a lot of pain with my back and neck...

Luckily my morning sickness is fading slightly but every time I wretch it bloomin' hurts! Worried that my pain will just gradually get worse now as my body changes...

Anyone able to reassure me? Lol x

 

[hayes]

Hey hun, i am pretty much 35 wks now and so far i havent suffered too badly with the pain. The morning sickness was most defo the worst part so far of my pregnancy. I have got GD aswell n that is hard trying to stick to the diet n exercise esp at this time of yr!! I am being induced between wk 38-39so not long for me now.

Hope your sickness eases soon(mine did about 12wks)and that you dont suffer too much pain.

Michelle. x

 

[SarahCourtney]

Hey hun, i am pretty much 35 wks now and so far i havent suffered too badly with the pain. The morning sickness was most defo the worst part so far of my pregnancy. I have got GD aswell n that is hard trying to stick to the diet n exercise esp at this time of yr!! I am being induced between wk 38-39so not long for me now.

Hope your sickness eases soon(mine did about 12wks)and that you dont suffer too much pain.

Michelle. x

Wow getting close for you hun!
What's GD? Would you mind letting me know how the induction goes? I think that'll be how my labour will start too and have heard all the good and bad stuff about it so would be nice to hear from someone with similar conditions to me xx

 

[hayes]

Of course il let you know hun, getting a bit nervous about it now but glad the end is in sight.

GD means gesational diabetes which they found i had at the start of nov. It means i have to be careful what i eat sugar wise but its not too bad and will b worth it in the end. It ment that i am now defo high risk and have to be induced.

Michelle. x

 

[SarahCourtney]

Of course il let you know hun, getting a bit nervous about it now but glad the end is in sight.

GD means gesational diabetes which they found i had at the start of nov. It means i have to be careful what i eat sugar wise but its not too bad and will b worth it in the end. It ment that i am now defo high risk and have to be induced.

Michelle. x

I'm so worried I'm going to get GD because I seem to live off sweet things at the moment - it's all I can stomach and crave (sugary drinks mainly).
Good luck honey and please let us know how you get on (and post photos too please!!) hehe xx

 

[hayes]

I wouldnt worry hun, if you do get GD it isnt that bad. Will defo update you as soon as i know anything getting very excited(and nervous)now its only a matter of weeks!!

Michelle. x

 

[SarahCourtney]

Hey guys

Not posted for a while in here!

Already had one midwife ap, two consultant aps and a scan ap lol have at least one ap a fortnight now until the end of February! Guess it's good I'm being well taken care of!

Looks like having lupus increases my preeclampsia risk by up to 30-40% which isn't great news and I can't have a water birth as I'd hoped, as baby's heart rate needs to be monitored through labour and birth however everything else has been good news and looks like they will take me in as soon as I get signs of labour (I won't be sent home until contractions are closer etc)
Plus they are going to closely monitor me througout the third trimester (extra scans etc) as lupus increases risk of smaller babies but that rarely poses much of an issue - just might mean needing to be induced a little earlier so baby can grow outside better.

 

[hayes]

Hey hun,

Its very good that you are being monitored so much and defo when you are labour you need to be kept a good eye on so that you and bubs are all fine. How are you feeling now??

I have my induction date, 14th of jan so baby will b here in 2wks yay!!

Just starting to get hip, knee, leg pains so im defo glad baby is cuming early.

Michelle. x

 

[SarahCourtney]

Hey hun,

Its very good that you are being monitored so much and defo when you are labour you need to be kept a good eye on so that you and bubs are all fine. How are you feeling now??

I have my induction date, 14th of jan so baby will b here in 2wks yay!!

Just starting to get hip, knee, leg pains so im defo glad baby is cuming early.

Michelle. x

Wow that's so close! I'm so excited for you. How have you been? Do let me know about how you cope with induction because I worry how I'll cope with the added pain.

I'm okay(ish) now... Still get very bad days of sickness and my fatigue is still pretty constant. How was yours through pregnancy? Think it's one of the things getting me down, feeling so pathetic and incapable of much movement lol

 

[Cazza]

Good to see they're looking after you !

I'm now 5 weeks pg so have booked a docs appt for Monday week and will speak to my consultant after that.

 

[hayes]

I will indeed let you know how it all goes hun, im so looking forward to it all being over and having bubs here now.

The tiredness was ok at first but has got worse for me in tri 3 i sleep no more that 2-3hrs at a time and then wake up in pain or needing a wee, then takes ages to go back to sleep. Its prob bodies way of preparing me for the sleepless nights tho lol.

It is horrid when you feel so incapable of doing things but i did find that the first trimester was worse for that and it did pick up for me.

Michelle. x

 

[hayes]

Hey girls, I had my beautiful baby boy on weds 15th he is so perfect n worth all the pain. I'm very proud of my body I think it did so well in labour. My fibromyalgia still seems to be ok no more pain then a normal labour. I have wrote my birth story over in the announcements will try to add pics when I can. Not sure how to do it.

Michelle.x