Starting a family when you have chronic pain

[RhiannonPhillips]

Hi all,

Hope it's OK to post this here. We're doing some research at Cardiff University on what happens when women who have chronic pain want to start a family.

We're looking at the challenges women with chronic pain face and the support they need when planning a family, pregnant or when they have young children. This can be anything from getting advice on medication use during pregnancy and breastfeeding to getting practical help with young children.

We've got a stakeholder event coming up in Cardiff on the 25th of January at the Park Plaza Hotel, from 10am-4pm. We'd love to have women with chronic pain and their partners/other family members come along! We'll be providing lunch and refreshments and we can cover reasonable travel expenses (please contact us directly if you'd like more info on this).

On the day, we'll be presenting some of the findings of our research so far, and gathering ideas about what the priorities should be for research in this area.

If you're interested in coming along or would like any more information, please e-mail us at [email protected]

You can register for the event at www.eventbrite.co.uk/e/star-study-stakeholder-event-public-tickets-30582243313?aff=ehomecard

Thanks,

Rhiannon

If I didn't live that far away I would have been interested as I've just gone through this myself. If you have any questionnaires etc I'd be happy to answer

Sadly I live too far away but I have suffered with ME for ten years and am currently 5 months pregnant - if you have a questionnaire or anything I'd be happy to help

Same, I'd come if I wasn't so far away. Happy to answer remotely.

Hi,

We've got an online survey running at the moment that focuses on women with autoimmune rheumatic diseases like arthritis, Lupus and vasculitis:

cardiff.onlinesurveys.ac.uk/star-family-study-online-survey-2016-v-1

If you have any of these conditions, it would be fantastic if you could fill the survey in. We're hoping to extend this out to other conditions that cause pain and problems with muscles and joints in the near future, but we've just focussed on this group of illnesses as a starting point.

I'll also post some stuff up here after the event if that's OK so that you can give us feedback on the ideas that come out of it.

Hope that's OK - thanks :-)

I'd be interested to hear the outcomes from the event. I didn't acquire my disability and the CRPS that came with it till ds was 4, but I wonder what our choices would have been if it was before

I'd certainly be interested! What will be happening on the day, would I need to do anything?! (I also have asd and am a bit crowd-shy)

We've got a few women who's health problems came on during pregnancy or while their kids were small taking part too - it can be a huge challenge physically and emotionally. I'll definitely keep you posted on what we find out and what else we have coming up. We also have Twitter and Facebook feeds with the username @STARfamilystudy where we post news.... Rhiannon

Hi Beyondthestarrynight, it will be a very relaxed and informal day. There will be about 30 of us there altogether. A few of us researchers will be giving short presentations at the start of the day, and then we'll be doing some work in small groups to come up with ideas & of course everyone is welcome to talk as much or as little as they like so there's no pressure at all! Rhiannon

Thanks for the quick response, Rhiannon!

I've done the survey, I will look into childcare and hopefully be able to attend :) (I live in newport)

Fantastic Beyondthestarrynight :-) Thanks! We can also cover childcare costs for the day of the event & mums with young babies are also very welcome to bring them along of course. Just e-mail the study team at STARfamilystudy*@cardiff*.ac.uk if you need any info on claiming expenses etc. Rhiannon