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?

Why can you carry on with the painkillers and stop WHEN you fall pregnant (as soon as you do)? I think stopping before you've even conceived is a bit unfair on yourself. Esp as TTC can take ages.

You'll also need to conceive ASAP so research all that stuff first and waste no time! I TTC for 6 months to no avail then added in Clearblue digital ovulation sticks and got pregnant almost immediately on those - turns out the preceding 6 months had been at the wrong times even tho had gone by app predictions. Obvs could be luck but do what you can each month to maximise chances and waste no time. All the best OP.

I agree with @gypsywater we tracked ovulation from the start to maximise chances. I ovulated way earlier than the apps predicted so who knows how long it could have taken without the OPKs

If your gp prescribes pregab for chronic pain in pregnancy he is negligent. Also read nice guidelines about chronic pain. The new guidelines do not recommend it for chronic primary pain. Duloxetine or amitriptyline. I have patients whom.come of zomorph for pregnancy you will be fine. Just takes a bit of time. Keep trying x

You can take codeine and paracetamol when pregnant and that is under maternity. No pain clinic will recommend any analgesia when you are pregnant. I say analgesia as opposed to pain killers as they don't kill your pain!. Pain medication only eases pain by 20 percent anything more is a bonus x

When I say new guidelines they are currently in review x

@Christmasfairy2020 I thought the new guidelines only applied to those not already prescribed it? Pregabalin has definitely made my pain a lot more manageable than codeine ever did. It's been 3 months so far. At this rate it'll be at least another 3 months but I'm sticking with it. Thank you for your support. I am taking the occasional cocodamol if I'm having a bad pain night but only if I really can't sleep at all.

@gypsywater the problem with that is pregabalin causes bad withdrawal effects so needs to be tapered off very slowly for a lot of people, so unfortunately waiting until conception is a bad idea. I've tried coming off quickly in the past and it was awful - shaking, sweating, major anxiety, pain levels elevated to the point where I just could not cope at all. As rubbish as the pain is, it's preferable to the withdrawal effects from rapidly coming off.

@PinkPlantCase do you think there was anything in particular that helped with the acceptance side of things?

I think I have to remind myself that years before the pregabalin, I wasn't taking anything at all. I was in pain but I obviously got through it. I don't know if my pain levels have got worse but I just keep telling myself maybe they haven't gotten worse, I've just gotten used to having them more under control and one day I'll be used to managing the pain again. I think tracking etc is a good idea and a good point really to try and speed things up.

It's a funny thing but, anecdotally, lots of chronic pain does improve during pregnancy. Mine was (still is) migraine and chronic headaches 15+ days per month. The thought of managing without my preventative meds, painkillers and anti-emetics for 9 months was terrifying but it was such a funny thing: the migraine improved dramatically as soon as I was pregnant (hormones, endorphins?). I've heard of lots of other people with similar stories of chronic arthritis pain or fibromyalgia that have also seen a massive improvement during pregnancy. Obviously I'm no expert but just wanted to share to give you some hope 💐 good luck 🌸🍀

@DunravenBadger

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.

But at the same time, those without children may not realise what is involved. A lot of lifting, climbing over you, having to move fast to catch up, having to get outside because toddlers and children aren't happy indoors too much.

It's hurtful but reality does make childrearing harder for those with disabilities (mental or physical).

It's also reasonable to assume your partner may work full-time as that's the norm for most men. So I don't think it's unreasonable for people to ask.

I know a friend who has chronic pain who has decided not to TTC as she just isn't able to care for a child. Really sad for her but it's her reality.

But obviously everyone is different and some have more control over their pain with medication than others.

You can absolutely have pain medication in pregnancy. Some of it baby will have to withdraw from, but that’s where risk management comes in. Regularly see women on co-codamol, co-drydomol, dihydracodiene, oramorph, paracetamol etc. Your GP sounds like a misogynistic prick.

Not knowing your diagnosis other than EDS, I won't get into medications - BUT - pregnancy causes everybody's joints to become more lax. Which puts you at a significant risk of additional back and hip pain, plus as your weight increases, it will put extra pressure on your knees, ankles and feet. If you use a wheelchair, some of this will be reduced, but hip and back pain could still be a huge problem for you.

Is there any way you could manage strengthening exercises at all? With a specialist physio, ideally? Pregnancy is hard on many people; I was fortunate in that my autoimmune stuff went into remission, but the back and hip pain was really difficult to cope with. If I had known half of what I do now, I could have at least been prepared better for late pregnancy and the immediate post natal period (and I'd have insisted upon being referred back to Rheumatology, so that I could be restarted on treatment/physio/pain relief immediately afterwards, rather than falling out of the system for years afterwards).

I cold turkeyed my gabapentin. Totally not recommended but my dose wasn't too high and I wanted to be off it well in advance to see how I felt about TTC. It was a horrible week but actually levelled out quicker than I expected. I found it easier to come off than I found it to go on in the first place. To the PP who said you should be on amitriptyline instead, that stuff was the devil for me. Gabapentin is the only thing that touched my pain and has bearable side effects. I can't help about drugs during pregnancy I'm.afriad as my GP was of the same opinion that I had to go it on empty. All is say it do try and stick with the withdrawal.. it's hard but will be worth it.

@NeverDropYourMoonCup (sounds like a story behind your username ) thankfully I've never had to use a wheelchair or mobility aids, I've always been able to manage without anything like that. I used to have physio and still do the strengthening exercises they gave me but it might be worth me asking about being referred back to them to see if there are any other exercises they can suggest.

@Jasperjosephjulian well done on getting off the gabapentin! Did your pain level out or just the withdrawal effects? I've read that for some people once they're totally off the gaba or pregabalin their pain calms down a bit.

@DunravenBadger I was on gabapentin for about 6 years. I found the pain definitely levelled off after a few weeks and I've been off it for several years now. I decided as well as wanting to TTC (which we ended up putting off for a few reasons) I want to get to know my body again. It's not been an easy ride, I still have chronic pain after all, but I find I cope with it better than I did as a 20yr old which is when I first went on it. If you've not been on it so long you might not get the same contrast. I had quite a few side effects on the gabapentin, the most annoying being slurred speech at times and unfortunately that has remained

On the acceptance front a lot of it was adapting my life so it’s full of things I can do. I actually forget now a lot of things I can’t do because of pain/weakness because I never have to do them. It doesn’t enter my consciousness.

I do have a very supportive DH which for sure helps.

The other side what correcting people when they ask ‘what’s made it bad this time’ my mum is for sure the worse for this. Sometimes there is something that I’ve done to cause a flare up but other times it just is bad, it doesn’t have a reason. But it’ll pass.

I’ve also had a lot of people say if should do more physio/exercise classes now I’m pregnant. I can see where they’re coming from. But Physio just hurts me. It reminds me of parts of my body that hurt that I was quite happy not being conscious of and I’ve tried things like yoga and Pilates for long enough in the past to know that whilst they make me stronger they will also increase my day to day pain levels much more than if I didn’t do them. So I’m just happy being me, no need to make it worse by trying to fix it.

I don’t know if that helps OP, hopefully it does

@Jasperjosephjulian gabapentin really messed with my memory/ ability to do mental maths. I’ve been off it for about 4 years now and I don’t know if the brain cells will grown back

I know you’re a human being with feelings and needs too, but your GP can’t and shouldn’t lie to you - if there aren’t painkillers that are safe to take in pregnancy (is paracetamol??) then that’s just how it is. It’s far better that your GP doesn’t lie and you end up with a very ill baby (or worse).

If you are successful in TTC I’d ensure you have plenty of family support around and buy in help if you can afford it, eg a cleaner or part time nanny. Having a supportive DH isn’t enough if you’re struggling with your own needs too.

Oh gosh pregabalin is the worst to kick! It's doable though, and you can totally do it. I tapered last year and it took me much longer than I anticipated. I took about five months but I did have to do it really slow because the taper messed with my heart rate which in turn made me really breathless (I actually thought I had Covid a couple of times). I was and am still taking codeine for the pain but have found that the pain that increased initially after tapering has kind of levelled. My doctor also said that I could expect the pain to get worse but that it should subside.

From what I remember from my previous pregnancy, my aches and pains pretty much disappeared so I was fortunate in that sense. However, the pregnancy itself damaged me further, hence the pregabalin and painkillers afterwards. Haha. Worth it though! I do hope you have the same and that any future pregnancy will be as pain free as possible!

This is something I have thought about recently as well, although we are not TTC at the moment. But I kind of want another baby so would have to kick the painkillers before properly TTC or actually getting pregnant. It's a daunting thought, but I'm currently seeing how I get on with smaller and less frequent doses, and there is something to be said for accepting a certain level of pain. I used to think being as pain free as possible was the only way, but I have found that I can actually tolerate a decent amount of pain and still get on with my life. There are days when I CBA with the pain so I just take more meds, but it is interesting to decrease and see how my body reacts. Fascinating stuff.

Also would recommend a TENS or an acupressure type massage machine. I get random nerve pains and the TENS just kind of muffles it out to a tolerable level. Heat pads can be pretty good too. Good luck!

I posted on this thread about an app for Chronic Pain (I just name changed, incidentally). It's been deleted and honestly I'm a bit stumped as to why. It's a reputable app based on up to date pain science. They have a medical advisory board and a podcast which regularly features scientists/doctors. I'm assuming a mod thought I was spamming in sharing a private company on here because I can't think why on earth it would have been removed otherwise but the app has helped thousands of sufferers (you can see that in the reviews in the App Store). It's called Curable. I'm a genuinely someone who was a chronic pain sufferer and this has drastically reduced my pain. I have EDS which is the same as the OP - a genetic issue.

Anyway, based on the fact I'm dismayed a post sharing a genuinely helpful intervention for pain was removed, I'm just re-posting. I had posted that I had accessed pain clinics multiple times and had multiple medical treatments and this was the first thing which helped me. It is a programme which helps you train your nervous system to calm down over time so your pain slowly reduces bit by bit. The science behind is it peer-reviewed and reliable. There are various research papers which have looked at its efficacy and found it to be a really useful programme.

Please don't delete this post, mods - there are so many pain sufferers whose lives would be improved by having a look into it. I had no idea I could make the improvements I have and I just want other people to have that option too. I'm posting from the UK, the company is American - I have no links to it beyond having used it and seen benefits from doing that.

@BabyPotato your withdrawal effects sound similar to mine. My heart rate goes a bit mad for a few days after each taper. Settles down pretty quickly (few days) but can be quite alarming at the time! I have to keep reminding myself it's just because I've changed the dose. That's great your pregnancy was lower pain than pre-pregnancy. Sorry to hear about your post pregnancy issues though. Can I ask what it is causing your chronic pain? I've read so much mixed info for hypermobility with lots of people say it got worse for them. I'm hoping that's just because people are more likely to post online when their pain gets worse though rather than when it gets better. Ooh TENS machines are great! I love mine

@Jasperjosephjulian I think I've been on it around 5 years. Not sure if that's considered long or not apart from my GP saying "as you've been on it for a long time, it'll take a long while to get off it" but in the grand scheme of things is 5 years really long? I don't know. It's great you've been off it several years. I hate the side effects of pregabalin (worst for me being a dry mouth so I need to pee several times a night!!) so in an ideal world I'd be able to stay off it but it wouldn't be the end of the world if I had to go back on after giving birth.

@PinkPlantCase thanks for sharing re acceptance. It's really helpful to read how other people are coping with it. Yes sometimes flare ups are just that aren't they, flare ups for no particular reason.

I didn't see your original post @ACovidofWitches. I think it must have been deleted before I came back to the thread. Does the app require any purchases?

It's actually not been too bad today. I've had usual aches and pains based on my activity but it's been good. I think sometimes it can be easy to think "oh if I was just on the higher dose of pregabalin then I wouldn't be having this pain" when in reality I probably still would.

I don’t wish to be offensive however I have in the past worked with young carers. I am not for one second suggesting that a person with a disability should not have children but I do think that anybody with a chronic condition that may impact their ability to care for a child should give very careful consideration to whether conceiving a child is the right thing to do. Acting as a carer for a chronically unwell parent is no life for a child.

It’s a bit harsh to get upset about posters querying how you’d cope with a baby if you’re struggling with pain so bad even TTC is difficult, when you haven’t said you have a disability, or that you’re coming off pain medication temporarily for the purposes of TTC

Plenty of people have take pregabalin for temporary pain relief, with no disability (in the legally protected sense). My own mother did. On reading your opening post I thought you were coming off it anyway and thought “why doesn’t she wait until she’s over withdrawal and feeling a bit better?”. (I also thought “she’d probably be fine during pregnancy itself” as many of my consistent physical ailments requiring pain relief vanished whenever I was pregnant. It was amazing.)

You also posted in AIBU. There’s literally nothing suggesting you have a disability. You painted half a picture and now say other people are being “incredibly offensive” by reading what you wrote.

@ARoseDowntown there isn’t a section of mumsnet for disabled parents...

OP was asking for people who were familiar with managing chronic pain. People with chronic pain know that pregabalin is prescribed for it, normally after a very long process of proving other drugs aren’t helpful before anyone will prescribe it.

People with chronic pain will also know that you generally need to come off medication before TTC but can go back into it afterwards, sometimes dependant on breastfeeding. Either way the pain could be medically managed well before any child gets into young carer territory.

It is incredibly offensive for people to suggest that OP shouldn’t have children because of chronic pain. It’s also very unhelpful when she’s asking for advice on pain management.

Thank you @PinkPlantCase. I didn't think I needed to mention I have a disability (normally well managed by the pregabalin) or that I could go back on it after giving birth in my OP. I'd thought it was obvious to anyone who would actually be able to help (and not just judge).

@Christmasfairy2020

Pain medication only eases pain by 20 percent anything more is a bonus x

When you describe yourself as a “specialist” are you saying you’re qualified in this area, because this statement seems absurd