Fibromyalgia and Lupus during pregnancy

[neeny]

Hi

Just wondering if anyones else has Fibromyalgia (FM) or Lupus (SLE)?

I'm on the mild scale but my docs can't tell me much about recovery after delivery and general parenting abilities.

Would be good to hear from anyone who has these conditions or knows someone who does and is or was pregnant.

Thanks.

[Lucy]

Neeny,

Not Lupus specifically, but I have an autoimmune disease that sounds very similar. (It is called Sarcoidosis, an autoimmune disease where the lumpathic system (lymph nodes) attack each other, causing all sorts of issues).

Anyway, I miscarried in July 2002, and I really questioned whether it had anything to do with autoimmune disease. The answer from my GP and my OB was a definate NO.

I then have gone on to have had two successful pregnancies and now how 2 beautiful babies. In both pregnancies I got tired, but no more than usual/no more than any other pregnant woman! My OB even suggested that the increased hormone activity of pregnancy can help fix autoimmune issues.

In terms of parenting ongoing, I get tired, but I have nothing to compare it too, and it doesn't inhibit our lives at all. (Although sometimes I get nervous if I feel any signs of an attack, which puts me and DH on edge a bit.)

HTH

[neeny]

Hi Lucy

Thanks for your quick reply! Good to see you're doing well as a mum with your condition. I also have fibromyalgia which is a type of chronic fatigue syndrome that comes and goes and causes muscle pain - can only work part time because of it. I was told some FM women find it difficult after delivery and when they take baby home. We're planning to get a cleaner for first month or so and maybe Blue Care nurses to help.

So far, at 23 weeks pain hasn't been too bad and it normally plays up a lot this time of year (humidity brings it on). Still have to have bi-monthly blood tests though.

Fingers crossed I do well - like you seem to be doing! Feel free to message me again if you have any other news/info to share.
Thanks.

[Lucy]

Neeny,

Are you on any meds? I was on Prednisone for a long while, but with the help of my physician, I weaned off the meds, and since then I take a a more natural approach to the pain (a lot of walking and swimming) which is harder but better, IYKWIM?

I know what you mean about the humidity.....my pregnancy with Olivia was in Darwin, and I was still working ( outside a lot of the time) and looking back I do not know how I coped. My pregnancy with Charlie was SO SO much easier because it was in Adelaide, without the humidity.

The constant testing is inconvenient, I know. TO be honest, that is probably the hardest thing.....I have to go for regualr lung funtion and respitory testing and with 2 kids, that can be a NIGHTMARE!

Very best of luck. I think your plan for a cleaner is an excellant one. Just be confident that you will cope.

Birth, for any one, is tough, but the benefit is that is shows what a reserviour of strength women have, and I was amazed at how I just "knew" I would be able to cope because all of a sudden my tiredness/pain seemed to diminish in comparison the the needs of my babies...........

[neeny]

Hi again Lucy

I take panadeine, panadol or panadeine forte if pain is bad. Can only take up to 2 panadeine forte a day. Rheumatologist has given me a script for 5mg of pregnisone a day to be filled if/when I need it. After I messaged you earlier today pain was worse and I threw up my panadeine forte (codeine can sometimes make me vomit) However its subsided again and hope I'll be at work tomorrow.

As for the labour part - am due in June and am always well in winter so hopefully no pain (apart from baby labour ones that is!). I can't believe you survived Darwin! We used to live in Tsv (grew up there for 20 years) and I don't miss that humidity at all! thanks again for your support.