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Living with Complex Regional Pain Syndrome (CRPS) or a chronic pain syndrome is challenging so if you’re planning to start a family, you might be wondering how your CRPS will affect your pregnancy. And how pregnancy will affect your CRPS symptoms. It’s natural to feel anxious – for some women, CRPS symptoms go into remission during pregnancy (possibly down to changing hormones), while others have flare-ups and although less common, some may find that their symptoms get worse. What’s certain is that your experience will be unique to you. With the right support, many women with CRPS have healthy pregnancies and births.
Here, a member of our Burning Nights CRPS community shares their experience of pregnancy, and doula (someone who provides practical and emotional support during pregnancy) Jilly Clarke gives her advice on how to prepare for labour and manage pain during and after pregnancy.
Hannah* (name changed to protect her identity), who is a member of our Burning Nights CRPS community, kindly agreed to share her experience of pregnancy and CRPS. Hannah is five months pregnant and has lived with CRPS for 20 years:
"I have CRPS with associated dystonia (uncontrollable muscle movements), both of which require strong medication.
My husband and I spent many years discussing pregnancy and the management of my conditions. We sought advice from different specialists and unfortunately, had no clear input. Most doctors had not known of anyone who had been pregnant with CRPS and dystonia and were unsure of the impact or management throughout pregnancy. I also faced very stigmatised responses, with medical professionals questioning whether it was fair to have a child, simply because I use a wheelchair.
In the end, I started doing my own research via the BUMPs website. We spent a considerable amount of time looking into adoption, fearful that my body wouldn’t cope with pregnancy or that medication would harm my baby but in the end, we discussed my pregnancy and my condition with my GP, who has known me since I’ve had CRPS. He was the only medical professional who didn’t question why we wanted children, who put all the cards on the table – potential flares/remission, access to medication – and offered me ongoing support should I become pregnant. His support meant so much to us and enabled us to feel safe to try for a baby.
I was concerned about what would happen if my medication was suddenly stopped but my CRPS symptoms and the associated dystonia in my legs have lessened since falling pregnant – a lovely surprise!
But I have had flare-ups in my lower back. This has caused issues with burning in my spine, sensitivity, pain and mobility issues. Prior to pregnancy, I was on paracetamol, baclofen, pregablin, lidocaine patches and oramorph and diazepam when needed. Based on my GP’s advice, most of my medication has been stopped. I can continue taking paracetamol, although this is ineffective for the CRPS. Local waiting lists for pain management support mean I would not be seen until after I have given birth, so I decided there wasn’t much point.
I was worried about labour, and knowing the unpredictability of my CRPS and spasms, it is possible that I would struggle to get into positions needed for a natural labour. As a result, I have been advised to have a planned C-section.
Having stopped all medication, we’re unsure of what will happen after the C-section and how to manage pain after birth.
While it can be scary handling the unknown of CRPS during and after pregnancy, knowing that we will have a baby in our arms very soon makes it all worthwhile”
I faced stigmatised responses, with medical professionals questioning whether it was fair to have a child, simply because I use a wheelchair
For many women, the main concern during pregnancy is whether they can take their usual CRPS medication. It’s best to discuss your specific needs with your midwives, GP and pain clinician. But if you’re advised not to take your usual medicines, non-drug therapies can be a safe alternative to try.
These include:
You may also want to try relaxation techniques, like meditation and mindfulness, talking therapy, acupuncture and a TENS machine (often used to help with early labour pain) can be helpful for some people, as it uses small electrical pulses to block pain signals and release endorphins. You can rent these online for a few weeks or months at a time, to save on the cost of buying one.
Planning ahead with your midwives and care team is key. Talk to them about any concerns you may have around the birth of your baby and ensure you include your CRPS symptoms in your birth plan (see below for more on that), as well as anything that might impact your condition during labour. There are drug-free options that are safe for your baby including hypnobirthing techniques (you can find free guides online), an epidural and gas and air. Many women opt for a water birth as being in water helps reduce the pain of contractions, relaxes your body and lowers stress hormones.
You may also want to consider using a doula. They not only provide physical and emotional support during pregnancy and labour but can advocate for you and help you postpartum. Jilly Clarke (AKA CubCare) is a doula who runs antenatal classes across Hertfordshire, London and Essex. She lives with chronic pain so understands the challenges of labour with CRPS. Jilly explains how a doula can help you prepare for giving birth. “When you live with chronic pain, the big worry is often that labour will just feel like your usual pain but ramped up to maximum,” she says. “Nobody explains that labour has its own pattern – it rises, peaks, backs off, gives you space. It's productive. Chronic pain doesn’t behave like that at all.
As a doula, I help you understand that before you’re in it. We look at what your pain normally does, what sets it off, what your body can and can’t tolerate and how things change when you’re tired or stressed. That way you’re not trying to work out what’s labour and what’s your condition in the moment. And because your condition isn’t something maternity teams see all the time, the system can jump straight to a tighter, more medically managed approach simply because you don’t fit the standard pattern. Having someone there who understands your baseline helps keep the focus on what you need, rather than what the system assumes.”
Jilly also advises on birth plans and including things that matter to you and your situation like:
Jilly adds: “Most of this is about helping your team understand what’s normal for you, so they don’t misread chronic pain as a labour problem or push you into something your body simply can’t do.”
It’s also important to plan ahead for once you’ve given birth, as changing hormone levels may affect your CRPS. If you have had remission during pregnancy, it could return soon after. Talk to your GP and midwives – emphasising the impact of your CRPS symptoms – which medicines you can take following labour, as some are advised against when breastfeeding. Jilly explains: “People are often told they can’t take anything if they’re breastfeeding and there’s a lot of misinformation out there. But there are good resources that show which medications are compatible and it’s worth checking early so you’re not living with pain you don’t have to.
Breastfeeding hormones actually help some people – the mix of oxytocin and endorphins can soften pain a bit – but the physical setup can make things worse if you’re not supported properly. Long holds, awkward angles, staying still too long… it all adds up. Getting feeding help early makes a big difference to keeping everyone comfortable.”
Jilly is all for keeping on with the tools you rely on day to day, like heat, TENS, braces, cushions, and slings, to distribute weight well. “Keep your pacing habits too,” she says. “Because having a newborn and recovering from birth is exhausting. The newborn phase makes you feel like you should push through everything but that’s often what triggers a flare.
And if your pain starts drifting outside your normal, don’t wait for things to get bad. Ask for a review. You’re allowed to ask for better support long before you’re in crisis.”
We hope you’ll find the information in this article useful and that it helps you or your partner, advocate for yourselves during pregnancy.
Join our online community to see if others with CRPS have tips for pregnancy and labour. Check out our range of support services.
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