Pregnancy and Chronic Pain Illnesses

[Katy180]

Hi, I'm 31 and have Joint Hypermobility Syndrome and Fibromyalgia. My partner and I are starting to think about starting a family in the next few years but I am concerned about my illnesses and how pregnancy will affect me.

Firstly I'm on a high amount of pain killers including the max allowance of Gabapentin and Buprenorphine which is a strong opiate. Obviously I'm aware I'd need to come off of my painkillers before getting pregnant but I'm really worried I won't be able to cope with the pain.

Has anyone else gone through this? I'm really not sure who to go to for help, the GP didn't seem interested and I don't think the pain management department at the hospital would be helpful when it comes to pregnancy. It would be great if others could share their experiences of this and also how their pregnancies went in relation to these illnesses.

Good question. I was on Oramorph for fibromyalgia prior to getting pregnant and obviously stopped when TTC. The only painkiller I've taken in pregnancy has been paracetamol and so far I've been okay. Some days are worse than others as they are with chronic pain conditions. I believe some GPs will prescribe codiene after 12 weeks but honestly, wean off the painkillers very slowly and you should be okay. There are other alternatives to opiates which you can explore (meditation, accupuncture, yoga, pilates - and I KNOW how painful any exercise is) so don't despair.

Are you under a consultant? That’s who we approached as my GP didn’t have a clue (but he was good and told me he didn’t know and to try the consultant.

I have a hypokalemic periodic paralysis and was on a lot of medication before pregnancy. We found out we were expecting in January and I had to come off everything cold turkey straight away because of the risks to baby. We went on to lose that baby and will never know if it was random or because of the medication. For that reason we were told to go without medication (other than pain relief like codeine that leaves the body quickly) whilst trying to conceive. It was the hardest 6 months of my life. Thankfully we found out we were expecting in mid July and since then I’ve had very few ‘symptoms’ of my illness, just pregnancy ones. Many conditions can respond positively to pregnancy, so worth checking that for your conditions.

I take oramorph,fentanyl and codeine in pregnancy under consultant care.
All five of my babies have been absolutely fine. Opiates when prescribed rather than abused cause very little risk in pregnancy.

I have hypermobility too, and a pituitary condition that often leaves me very exhausted. I'm currently 22 weeks. I had a very bad period with my joints from weeks 11 - 17ish but they have improved, worst part is at night because you need to sleep on your side and it causes my hips to partially dislocate so I'm waking up all through the night to constantly switch sides. I've had a physio referral and that seems to be doing some good, plus a physio follow up. My obstetrician was knowledgeable about hypermobility which was reassuring and there were no real concerns in terms of the actual birth, it's more just painful being pregnant because it causes your joints to relax more than usual.
I've also been hit really hard with exhaustion. Had to take a couple of weeks off work at one point because I really couldn't do anything I was so tired. The further I've got into my second trimester the more that's improved but I am still getting pretty tired.

Thank you all for your advice. @Keyboard91 what sort of consultant? I did have a pain management Dr but was signed off last year as I was managing ok, but tbh I wasn't a big fan of his. I'm sorry for your loss, it does make me think that when the time comes I'll work with a doc to try coming off all of my meds first to see how I manage. I have wanted to try reducing what I'm on now anyway because of the massive amount I take, I don't think it's good for me in other ways like my severe IBS.

@MyDcAreMarvel that's really comforting actually, just thinking there's something I can take should it get too bad trying with nothing. It's certainly something to look into with a doctor when the time comes. To be honest coming off everything terrifies me, I've been on a high amount of pain killers for over 6-8 years and the years before that when we were trying to get the balance right and I started on codeine and tramadol etc I was just in so much agony I could barely work, spent full days in bed... I was tough. I don't see myself as a strong person!

Thank you all for the comments it is really appreciated. I really just want to do my research and make sure I weigh everything up properly. There's also the risk I'd pass on the Joint Hypermobility to our child that I'll have to look into properly. We would go to a doctor first before TTC, especially with the weaning off of the medication and the fact I'd need my Mirena removed, but I really am just starting my own homework on my condition and the effects pregnancy has. To be honest there isn't a lot on the internet!

X

Op it’s important that you speak to an obstetrician not a GP re your meds. GP told me to go cold turkey, consultant was horrified as that would have been dangerous for unborn baby.
That may mean going to your local EPU emergency room as your app with a consultant probably won’t be until 18 weeks. It’s an odd system because you need meds advise straight away.