To wonder how we TTC with chronic pain?? Really struggling!

[DunravenBadger]

DH and I want to TTC later this year. I'm tapering off pain medication (pregabalin) under GP guidance and really struggling! Pain levels are high today and I've cried a few times.

If you suffer with chronic pain, how have you found TTC? Any pain management techniques you can recommend?

I spent two years TTC with chronic pain. I'd recommend getting a referral to your pain management clinic if possible. They have been an absolute god send to me. They suggested different coping mechanisms so I had a toolkit of options. Things that help me include heat, TENS machine, body pillow for sleep, weighted blanket, also suggested which medicines I could and couldn't take. They look at your pain holistically, and could offer me other things like pain psychology to help with the health anxiety that came with chronic illness.

I'm a practical kind of person

How would you look after a child if you are in pain ?

Or can you afford to buy in help like a nanny ?

Is it permanent pain? How do you look after a child if you’re in constant pain?

Has your GP prescribed you alternative pregnancy safe painkillers instead?

Following with interest as I will have to come off my pain meds to TTC as well.

General pain management I've used aside from painkillers are: massage, hot baths, microwaveable heat packs, a back massager cushion (amazing and also helps with restless legs if you lay your legs on it lightly). I use movelat on swollen joints to relieve pain as I'm allergic to ibuprofen and asthmatic, so can't have aspirin. I know some people swear by TENs machines but I've never tried one.

Once she's had her child she's going to be able to start taking pain medication again.

It's unbelievably offensive to respond to a message like this suggesting that a disability that causes chronic pain makes you unable to parent.

Completely agree with Carter.

I have a chronic pain condition which was diagnosed when my daughter was 9. By then I also has two step sons younger than my DD. Should I give them back

Interested in your post as I would love another in 2 years but also consider how my body would react to pregnancy.

@CarterBeatsTheDevil

Once she's had her child she's going to be able to start taking pain medication again.

It's unbelievably offensive to respond to a message like this suggesting that a disability that causes chronic pain makes you unable to parent.

To be fair, that's one of the reasons I did not want DC. Besides having RA myself, my DM was frequently unable to do anything with me due to pre-existing illness and it was an unhappy childhood.

However, every situation is different.

Presumably the OP can go back on the medication once she has had a child!

@CarterBeatsTheDevil

Once she's had her child she's going to be able to start taking pain medication again.

It's unbelievably offensive to respond to a message like this suggesting that a disability that causes chronic pain makes you unable to parent.

It does not make it any easier though does it? It is something the Op would need to consider. What about going through pregnancy as well?

I have chronic pain also. We tried TTC for a few years but it turns out OH is infertile. If we were at risk of missing fertile days but I wasn't up to doing anything, he'd wank into a cup and I'd use an oral syringe to get it up there.

Thanks for those being supportive. It is incredibly offensive and rude to suggest a disabled person can't have DC. After giving birth I can go back on meds. I also have the help of my DH but there's nothing he can do about me being the one who has to carry them during pregnancy.

I'm on the waiting list for the chronic pain team so it's reassuring to read they have helped others.

My GP is currently refusing to suggest any alternatives as "no painkillers are safe during pregnancy" I feel like an incubator for an as yet not conceived child rather than a human being with feelings and needs too

Ooh a massage pillow sounds amazing! Is it one of those vibrating ones or one with the balls? I've always been curious to try one.

It is rude to ask it was my first thought too, I'd imagine it would be hard to look after a baby in chronic pain but not impossible.

My mums had success with weighted blanket and weighted small pillow type thing which she can lay across painful joints.

She also takes edge off with paracetamol. Doesnt touch pain as such but makes her more able to cope iykwim

I'm a chronic pain specialist.
Today is a flare up. Pregab is hard to come of well done for trying!!!!

Mindfulness!!!
Make a flare up box - put everything you like init and then everything is there for when you need it.
Pace yourself.
Self compassion and kindness xx

Also when you go to the pain team demand to be listed for their group pain programme (currently delivered via zoom )

www.disabledparent.org.uk/personal-experience/living-with-chronic-pain

Get a tennis ball or spiky ball as this helps with sore areas. Roll.hips against wall of the ball. Get out for a walk. Review how you feel hourly and get out for a walk regardless - to the gate or lamp post. Watch under standing pain in 5 mins as well as tame the beast on you tube

I’d seek advice from your condition specific consultant with regards what alternative medications you could consider.

Most people with chronic pain are fine in pregnancy with the hormones etc. The pain is intense afterwards due to fatigue, stress and tiredness. You will be fine.

Have a look at websites like BUMPS (best use of medicine in pregnancy) - they have good clear info on what you can and can't take. Then try a different GP, I'm sure there will be some safe pain meds they can prescribe, even if just paracetamol.

The massager pillow is indeed the type with the balls - they rotate and it's surprisingly effective. Mine also has heat. I have EDS and fibro (and possible psoriatic arthritis) so lots of sore and achey muscles! I have been using it this week as I've been working long days and it helps ease my back. I have a fancy specialist chair for work with lumbar support but my back still flares up periodically, and when it does the pillow helps.

Thank you so much for your advice @Christmasfairy2020. Do you know much about pregabalin during pregnancy? I've read lots of research papers but they're all a bit ambiguous. Some suggest there is a link between pregabalin and issues for the foetus, others suggest not. Obviously in an ideal world I'd be off it, but if I can't, how bad would it potentially be? Thank you for the reminder it's just a flare up. The pain is a lot more manageable today and I did push myself to get out for a walk yesterday afternoon and today too.

@IWishTheBishopWell oh I have EDS too. I've checked out BUMPS and it seems to suggest my medication is fine but the GPs I've spoken to have categorically said no

@Doublefaced unfortunately I don't have a specialist. I was diagnosed by a consultant physio who then discharged me after diagnosis and I haven't seen any specialists since.

@Hankunamatata thank you for the link and info.

Hi OP, you need a more supportive GP. Or you need them to refer you to someone who understands about pain medication and pregnancy. This could be as simple as a specialist midwife, doesn’t need to be a pain clinic.

I’m 22 weeks pregnant at the moment and had to come off the medication that I took everyday to keep the pain at a lowered level, the equivalent to your pre-gabalin but I could still take paracetamol and codeine when TTC.

Now I’m pregnant I can also still take codeine and paracetamol. I don’t take them every day, and I can count on 1 hand the number of times I’ve taken codeine as I try to follow the idea of taking the lowest dose for the shortest amount of time. But it’s there if I really really need it.

I’m often quite hard on myself and just try and put up with it, my midwife has actually told me I should take more painkillers if I need them. Me being stressed out and upset isn’t good for the bean.

I had to slowly wean off the other medication and then have it out of my system for atleast 3 months before TTC. If I’m honest it wasn’t as bad as I expected it to be, it just meant that when the pain really flared up it was REALLY bad but my to day pain levels weren’t that different.

I generally manage using heat, TENs and trying to listen to my body a bit more. My work are also more understanding now too. If I physically can’t sit at my desk for a few hours they understand that I can’t just drug myself up and crack on. WFH has also helped massively - I never have to carry anything

A big part of what helped me was acceptance. I’m in pain all the time and that’s okay. I stopped treating like a fight against my body. I don’t do things that hurt more but ‘might’ fix it in the long run.

Also don’t believe all the people who say you’ll be on less pain because of pregnancy hormones. That hasn’t been the case for me. But being pregnant has helped me like my body a lot more, my body is actually making something and is doing a good job! For a change

On the pregablin during pregnancy front I was on gabapentin for a few years and know that people with epilepsy would sometimes be allowed to stay on it during pregnancy, on the lowest dose possible. But my GP was always very firm that they wouldn’t allow me to stay on it. Though a neurologist or other specialist might be able to green light the pre gabalin I don’t think you’ll ever get a GP to agree to it.

@DunravenBadger it certainly isn't the case that no painkillers are safe in pregnancy. I am TTC and still taking painkillers, the gp has said the only risk would be withdrawal for the baby if I was taking large amounts near the end of pregnancy. I have cut down a lot and used some of the ideas above.