RLS Research: RLS and Pregnancy

[Daragh]

One of the most common complaints we hear about from people living with RLS is that there isn't enough research being conducted into causes, treatments etc.

A piece of research is being conducted by the University of St Mark & St John in Plymouth, looking at RLS and Pregnancy. So far, 226 women have completed the survey but we need many, many more to make the research valid and to support a grant application to carry out further research. So, we are depending on you to help us. It would be a terrible shame for this research not to progress because of lack of support from the very people it is trying to help. The survey takes about 5 minutes and is completely anonymous.

If you live in the UK and have ever experienced RLS during a pregnancy, at any point in your life, please complete the survey.

The purpose of the survey is to gather information from women suffering from RLS during pregnancy (current or past pregnancies) to shape an intervention to reduce symptoms and improve quality of life during and after pregnancy.

Please visit the link below to help us.

rls-uk.org/news/pregnancy

[Hamish58]

I'd have helped and done the survey but I'm a man and I'm not pregnant. They need to open this up to everyone who has it or also those that have had operations that made it considerably worse. Mine was a back operation.

[Kaarina Administrator in reply to Hamish58]

Hi Hamish, a great idea, to open it up to everyone or those that have had operations that made RLS considerably worse. Unfortunately it is much easier said than done. This research may not go ahead if there are not enough women to complete the survey.

[Hamish58 in reply to Kaarina]

Hi Kaarina, Any findings you find with this research will be great to read as it's such a debilitating and life altering affliction to live with.

[Retren]

Fortunately did not have it during my pregnancies.

[Hidden]

Kaarina,

I cannot participate, but I will ask my ever-growing family. What severity of RLS are you looking for (one attack, multiple attacks?) Essentially what I'm asking is this: are there some guidelines I can give them on what to look out for? They will ask me specific questions and I need to know how to answer them.

[Kaarina Administrator in reply to Hidden]

Hi Jess, this is the online survey that Dr. Giorgos Sakkas talked about at the AGM. The number of surveys now received is 322 which is better than three months ago when only 226 women had completed the survey. Ideally he would like at least 500 completed surveys.

There are no specific guidelines other than suffering with RLS at any time during pregnancy either now, 5 years ago or 40 years ago. You need not have suffered with RLS before pregnancy although at the AGM Dr Sakkas said that 54% of the women who had already completed the survey stated they had RLS before pregnancy.

Thanking you in anticipation for asking family members if they suffered RLS during pregnancy.

[LotteM]

Just completed the survey. I missed questions about the severity of the rls during pregnancy. Also whether one had rls already regularly before pregnancy and on (at?) what scale.

I only had rls earlier in relatively brief episodes, in hindsight always triggered by something (extreme tiredness, reduction in my (sports) activity pattern and yes, during pregnancy, and since menopause. 55y now.

[Kaarina Administrator in reply to LotteM]

Thank you LotteM. Much appreciated.

[Hidden in reply to Kaarina]

It would be interesting to know if his study asks if the delivery was by Caesarean Section or not. Also, regarding surgery, my own experience with surgery lately is that the configuration of operating tables has improved considerably to conform with the body. I started in the Operating Room in 1965 and operating tables were hard, not well padded and we had to try to maintain good body alignment with sandbags, pillows, and such. Because a patient was 'artificially asleep' pressure on uncomfortable nerves was not something they were aware of until they woke up and sometimes wondered why body parts ached that were not involved in their surgery. Just a thought. Along these lines, I have spent time in some very uncomfortable hospital beds and emergency room stretchers. Any thoughts ?