Women Need More Options for Managing Chronic Pain During Pregnancy

I have chronic pain that is linked into Ehlers-Danlos syndrome and at present I am 19 weeks pregnant! (Such an exciting time and no matter what I say about the pain and emotions I am so blessed to be carrying our baby.)

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I found out I was pregnant at just over four weeks, and quite soon after I was diagnosed with hyperemesis, which means you can’t eat or drink – you can’t even keep down a sip of water! This left me in bed most days so I didn’t notice my pain too much from the exhaustion and dehydration!

At about 13 weeks my pain came back to me with a vengeance! My hips were subluxing, my knees dislocating and on work days my fingers were dislocating (I do long shifts at a computer which causes my fingers to revolt!).

My main dilemma is the lack of knowledge regarding pain management and pregnancy of someone with a chronic illness. I don’t know how many of you ladies are currently going through this or are now having flashbacks regarding the lack of support available. I was on some pain medication and having short wave therapy, all of which had to stop when I found out I was pregnant (understandably).

However, there were no discussions of any alternative therapies I could access to manage my pain. (Do not mention the words “positive thinking” at this point!!)

When I called the doctor regarding the pain I was getting from frequent dislocations, I was advised there was pain medication I could take but the baby might get addicted to the medication! With Ehlers-Danlos syndrome, the internet and specialists I could find were very adamant that exercise is not as good for you as it would be for a healthy pregnant woman! Because of Ehlers-Danlos syndrome I have a weakened cervix so certain stretches on a regular basis could lead to premature labor… At 38 weeks I could handle that, but at 19 weeks this is not a risk I am willing to take to help my joints!

I was passed to see a consultant but unfortunately they then had to refer me to a kidney specialist and rheumatologist! I am waiting for all my referrals but I am shocked by the lack of knowledge surrounding Ehlers-Danlos syndrome (EDS) and chronic pain in general during pregnancy with doctors.

Stress is meant to be bad for my little baby, but there are no alternative pain management therapies available to help combat my pain – therefore the stress levels!

Normally you can have a nice warm bath or heat pack to help with EDS, but again with pregnancy hot baths “aren’t recommended” and heat packs can only be used for 10 minutes at a time. Have any of you only had pain for 10 minutes? That’s a dream!

I cannot describe the feeling of pure joy from finding out I am pregnant alongside the dread and depression of knowing I have to live nine months of my life without any pain management. This is alongside the usual stories you hear about the difficulty of a “healthy” person’s pregnancy in the final trimester that I have to look forward to!

Hopefully other pregnant women with chronic pain know they are not on their own. We need to raise some awareness on the lack of support for women in our position!

Love to everyone! Comment any ideas or tips that have helped you through a pregnancy with chronic pain. Stay strong!