Pregnant with AS

Posted , 3 users are following.

Hi everyone,

I really need some advice from any women who have recently had babies whilst suffering from  an AS flare.

I have been diagnosed for 14 years - had my first child 7 years ago and was symptom free during my entire pregnancy and labour. I am now 31 weeks pregnant and have been suffering with the worst flare up for the majority of this pregnancy. I have had a steroid injection which gave me absolutely no relief. I constantly have a lot of back, shoulder and neck pain with severe chest and rib restrictions. Very worried about just being able to breathe in labour, let alone get through delivery.

I have been told I probably will not be able to have an epidural and I may need to go under general anaesthetic when the time comes. But nobody in Antenatal understands AS or the problems it causes and I have been offered paracetamol and co codamol to 'help my pain'.

There is just no information out there on my options - so much so, my rheumotology consultant told me to 'grin and bear it' and the nurse said I should go onto the NASS website and ask a doctor's advice on there! I won't btw, because subscription costs £25.00 and I can't afford that just to log on to a forum.

I would really love to hear from anyone who has had any experience of this whatsoever, I am just so fed up with healthcare professionals not understanding and I feel like I'm getting nowhere.

Thanks so much.

Naomi

1 like, 12 replies

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12 Replies

  • Posted

    Sorry your dealing with this. I had severe pelvic girdle pain during both pregnancies. At the time they thought it was pregnancy related and didn't offer any help or support either. Now my youngest is a year old and they suspect AS. I'm not even sure if I have it or not yet but it would explain why both my pregnancies were so difficult.

    I did get some physio therapy which helped my pain but unfortunately I had to pay for it because the waiting list through the maternity physio was so long. I finally got an appointment at 8months pregnant but I had to get some private sessions before that coz I could barely walk. There is very little support and I never found midwives or doctors to be any help. They too gave me paraceotomol but it was pointless. I found the only thing that helped me get through the day was a hot shower in the morning.

    I have been doing a lot of research though since I heard I may have this and I've read that a low starch diet can be helpful so it may be worth a shot. ?

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  • Posted

    I'm so sorry to hear that you are suffering so much.

    I'm new to AS, have only recently been diagnosed. I had a horrible flair and pain meds weren't working. Only making me sick. 

    Meditation worked for me. There are guided meditations on YT specially for treating pain. It helps relax the muscles. 

    Also, I've read a lot about starch-free diet. I've been on it, but it takes time to see the results. I don't know if when you're pregnant you have some special needs for starches, you should talk to your doctor, but you get to eat a lot of healthy veggies and fruit.

    I'm sorry I couldn't be of more help.

    Hang in there!

     

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    • Posted

      Hey Masha. Look into taking a good pro-biotic too and drinking bone broth soup. I've heard great things about the soup but still learning/experimenting. I have found pro-biotics to be a huge help to me though coz I also have digestive issues. I've had digestive problems for years long before all this started and i believe there is a connection.

      I've been having acupuncture and she is a qualified naturopath. She basically told me if we heal the digestive tract, we heal everything (slowly).

      Naomi are you doing any exercises? I know it's very difficult when you are in pain but swimming really helped me. I couldn't walk on land but could swim like a fish lol. And I also did some specific stretches and core strength exercises that are safe during pregnancy. Let me know if you want more info and I'll try to explain them or find a link for you. ?

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    • Posted

      Thank you for your advice Backtome!

      I haven't tried the broth yet. Been trying to find good quality bones.

      I started swimming recently and I resumed with yoga. I also go to pilates once a week. My physiotherapist insists on some exercises that give me soar back. I hope he knows what he's doing, but swimming and yoga are defiantly something I can recommend. 

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    • Posted

      I'm having the same problem lol trying to source bones but I think some companies sell them pre-made and they are organic but I havnt looked into it enough yet. I'll let you know if I find a good one ?

      Yes I must defo join yoga too 😀

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  • Posted

    Thanks so much for your responses ladies, I really appreciate it.

    My AS is pretty advanced - I have fusion in my lower vertebrae and the disease affects pretty much every joint in my body.

    I tried every single drug available to me to no avail until I was offered Humira 2 years ago and it has really changed my life.

    I decided to stop my medication in view of becoming pregnant at the beginning of the year - as I was symptom free in my last pregnancy I didn't really see the point in putting a highly toxic drug into my body and therefore my baby! It took a couple of months before the symptoms came back.

    Without the medication, life is pretty rubbish but I can deal with it as I know after I have given birth I can restart Humira and get back on track. I do lots of walking and day to day exercise - the sleeping is bad but I can deal with it as I know it will be short term.

    My problem is really to do with the labour side of things.

    The information available on options for women flaring during pregnancy is negligible - my rheumo nurse said she hasn't dealt with many pregnant AS sufferers herself. I just don't know what to do! I'm not really over the moon about the prospect of being put to sleep to have my baby but understand that may need to happen.

    It's more the point that, at the moment, the antenatal team expect me to have a natural delivery when I am just not confident in my body's ability to do that, especially with the restriction I have not just in my back but my chest and ribs. Breathing normally is hard enough at the moment, let alone breathing in labour! And then if it doesn't happen naturally, I then just have to go to surgery to be put to sleep, I guess?! I just don't feel there's enough information out there for me to make educated and informed choices.

    I'm also worried post delivery about recovery - laying in bed just won't happen for me, it'll be agony.

    It's just so confusing!

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    • Posted

      That is a really tough decision to make. 😟

      With my first I had an emergency CS under General anaesthetic after hours of intense back labor (which injured my tailbone) and it was very difficult tbh. Recovery was awful but mostly because it was so unexpected. I never in a million years imagined that would happen with my first child so it was traumatic. But if your prepared and know what to expect it may be a little easier.

      But on the other hand with a natural birth it can cause injury to the hips, ribs, lower back etc. I know lots of women who had a hard time so maybe the other option is safer for you given the complications you already suffer. Your risk of injury are likely higher than most.

      I know it's not an easy decision to make. After the general anaesthetic I was groggy for awhile and needed help with the baby for the first couple of days but I managed and I don't remember the first few hours but I remember cuddling baby up in the ward about 4hours later. My partner made sure to take lots of pictures of our first moments together while we were still in the recovery room.

      But one thing you need to be aware of it that a CS can make back pain a lot worse. Your core muscles will be likely jelly so you will need to wear a tummy support to pull everything together to help those muscles heal and get stronger and also to take the pressure off your back.

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    • Posted

      Thanks so much smile

      Even though you had such a traumatic time first time round, it sounds like everything was OK in the end. I got away with just pethidine first time, and I probably had the same groggy first few hours with my baby as you did.

      I'm just anxious I guess - I'm usually such a 'what will be will be' person but I just feel like nobody I'm seeing in the hospital really understands or has any experience of birth with someone like me!

      Thank you so much for sharing your experience, it has really helped.

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  • Posted

    I don't have children, so I cannot give you any advice based on personal experience, but I strongly urge you to explore all options and be stubborn and give to your doctors and nurses additional information.

    I know it may sound arrogant, but it's not. They do not deal everyday with women suffering from AS (among other things because AS is underexposed in female population!). 

    I was lucky that my endocrinologist already  has a few women patients suffering from AS (two of which are negative to HLA B27!), she took it seriously. It's an autoimmune disease, it's systemic all doctors should take it into account when dealing with AS sufferers.

    However, mostly they mostly shrug, especially since mine was caught at an early stage (for which I am forever grateful!) and just treat me as any other patient.

    The choice you have to make is not easy, but you have to pick whatever will do least damage to your body. 

    And if there's one thing I learned in my decades long experience with doctors, exaggerate! I'm not saying you should exaggerate to get certain meds, NO, but to get their attention.

    As long as I was able to function and deal with the pain, they brushed me off. The moment I was on all fours from contractions and pain (unfortunately, I wasn't pretending), I got their attention. 

    I wish you all the best!

     

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    • Posted

      Thank you smile

      I am not usually backwards in coming forwards when it comes to giving people my opinion! wink

      I just feel I'm repeating myself to all these people and it's wearing me down. After reading your message, I've written down my concerns and I am going to take them into my next Obstetrician appt in a few weeks and make her address them one by one. And if she can't answer them, she'll have to make enquiries with the anaesthetist and then come back to me!

      Also, I've realised that I haven't really been thinking about the effect all this will have on MY body, more been thinking how in hell I'm going to get through it and get my baby out without thinking of the consequences.

      This advice sure beats a nurse telling me to do breathing exercises and walk to 'keep' supple - if I was supple I wouldn't have this problem in the first place!!

      Thanks again.

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    • Posted

      There is a condition called pregnancy related pelvic girdle pain (also called SPD). It has very similar symptoms to AS. It may help to tell your doctor that AS is pretty much the same thing as SPD or PPG except it's a permanent long term condition and you have been dealing with it for a very long time and as a result your body is already damaged and weak. Tell them the pain in much more severe and debilitating than they could ever imagine. They may be more familiar with injuries women face due to these conditions during child birth and may listen to you a bit more.

      I know you said you are dealing with the worst flair you have ever had. That may not just be due to AS. During pregnancy all the ligaments and joints in the pelvis relax and the muscles tighten which can really worsen pain due to mechanical issues. Get your partner to massage you with some olive oil or coconut oil. You can also roll a tennis ball onto tight areas to help loosen some of those muscles and it may give you a little relief. And i would highly recommend seeing a good physiotherapist or an osteopath especially towards the end of pregnancy

      Please keep us updated and feel free to pm me if you need someone to talk to ?

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