RLS STORIES: Marisa, Cumbria

Marisa first shared her story in 2012 - I have had RLS since I was 19 years old and my mother and gran had it too. My sisters do not have it, nor do any of my other family or friends which makes it very difficult for people to understand my life. 

Because my Mum had RLS the doctors put me on the same medication to help to manage my sleepness nights but as I've gotten older my legs have gotten worse. 

RLS has ruined my life, not being able to sleep, watch tv, travel but above all it has affected my ability to have my own family, which I find heartbreaking. My husband and I lost a baby and I was told that the medication I am on for RLS is very dangerous to unborn children. I have tried so hard to stop taking my medication in order that I can have a baby but I cannot cope without it as I have RLS twenty four hours a day without it. It's so saddening and I blame myself.

Update, July 2014: I have suffered from RLS since the age of 19, but when I discovered RLS-UK I found support from other people who have similar problems which gave me a bit of comfort. My husband and I were hoping to start a family but after a bit of research it did not look promising as the RLS medication I am taking is not approved or even tested for pregnancy. My RLS is so bad that I could not stop using my medication and therefore believed I had to choose between my medication or having a baby.

I told my story on the RLS website and shortly after I received an email from the charity, in which they documented some tests on a particular drug, including details of a study carried out in Berlin, where two women had used the drug throughout their pregnancies and had successful births with no complications.

I took this advice to my GP and he referred me to a consultant at our local hospital. I discussed my medication and what they could do to help me, and the consultant was very encouraging and supportive. We decided to try for a baby and once I found out I was pregnant we had a very worrying time. Even with advice and support I was still very concerned about being on the drug.

While I was very nervous, the support from family and friends and the brilliant support from the doctors and staff with having extra scans and appointments helped a lot. My husband was great with me as we took the emotional journey. I hit a few complications on the way but it was all worth it in the end as we now have a beautiful little girl, Amelia, who was born both happy and healthy. We were so happy and relieved that she was ok.

It was my mother and father-in-law’s 50th wedding anniversary in June and they are so delighted to have a new granddaughter that they are asking everyone who wishes to celebrate with them to make a donation to RLS-UK instead of anniversary gifts for themselves.

Our whole family are grateful for the support and information that was given to me in 2013. If it was not for the RLS-UK and the information I was provided, I would not have tried for children and would still be wondering if one day things would change!

Thank you for being here and to other RLS suffers for their advice and support