Hi everyone. I’m posting for the first time about something specific. I really want to be sensitive as I know pregnancy/having children is not a given for everyone so please avoid if triggering.
I’m in my early 20s, engaged and naturally we are discussing starting a family which has always been a life goal of mine as I am naturally very maternal. I’ve had RLS since I was a baby. It is extremely severe, I have symptoms every single day, during the day and at night. I now manage it relatively successful at night with Pramipexole but I do still have life altering symptoms and struggle every single day.
My RLS has been passed through the family. My grand mother has it and my own mother (albeit mildly). My teenage cousin has it quite severe. It seems the younger generations have it much worse and symptoms from a much earlier age. It’s definitely passed down the line.
I am now really struggling about the prospect of passing this on to my own children. I don’t think I could live with the guilt. It’s also worth noting that I also have lupus which runs in my family. I’m not sure I could deal with the guilt of inflicting these horrible illnesses into my children. I’m considering not starting a family at all but of course this would destroy me, my relationship and my own life. I feel so stuck!!
Does anyone have any advice or have been in a similar situation? Thank you
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leighcm13
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Hi, I understand your concerns. I have severe periodic limb movement disorder (PLMD). I have read there's a 50% chance of one's offspring having it. Not sure if this is also the case for RLS.When I fell pregnant, I never even contemplated my child having this awful condition. But when he was 13 months old, I noticed his periodic limb movements at night. That was one of the worst weeks of my life. Since then, I have been managing his condition as well as mine. Emotionally, dealing with his is worse for me. It is really, really tough. But had i known all this prior to having my son, i don't believe it would have changed the outcome. I'd still have had him. I hope this helps you in your decision making.
I should add, even if your children were to have RLS, the treatment available in the future may be radically different to what exists now. I'm very optimistic about what the future holds in respect to these conditions!
Thanks so much for sharing this it’s really helpful. I think you’re in a similar situation to my mother who never even thought that I would end up having RLS like her. My symptoms are so much more severe it’s almost like a totally different illness to hers. I’m so sorry that you have to deal with the emotional stress of watching your child suffer but it sounds like he’s so lucky to have your support. Thanks for sharing I really appreciate it.
Gosh that is an awful dilemma. I'm sorry that you have to make such a choice.
I would 't ever attempt to offer any suggestions, it's up to you and your partner to make a choice.
I can only offer some information which may or may not help.
It's correct that there is an inherited predisposition to RLS, but as several genes are involved there's no current way of predicting the extent to which they will be passed on.
In addition, genes aren't necessarily always "expressed" so even if somebody has the predisposition they may escape the condition. That's not really predictable either.
So there is a risk your children could have RLS but it's not possible I don't think, to say how big the risk is.
I'm afraid I don't know what the risk is for lupus.
As Amrob says if you do have children and they have RLS, then there are some possible new treatments in the pipeline, but it could be years before they're available.
There is currently a treatment for RLS that can be successful for up to 60% of people, partially successful for another 20%, but doesn't work for 20%. It does have to be repeated and, depending on your circumstances isn't easy to access, partly because it hasn't yet been widely accepted.
I hope this doesn't cause you upset, It's an obvious option, if you should so choose, is adoption.
A word for yourself.
Doctors are still prescribing drugs for RLS without first considering non drug treatments. This is possibly because they take longer.
You may already know that iron therapy can be an effective treatment, as it tackles one of the main causes of RLS i.e. iron deficiency.
I don't know where you live, but in the UK I believe there are genetic counsellors who may be able to assist you and your partner.
I feel I also need to warn you about dopaminergic augmentation. I'm guessing whoever prescribed you pramipexole did not warn you about this.
Augmentation is a very common Major complication Of pramipexole.
The risk of suffering augmentation is 7% year on year, i.e. 7% after 1 year. 70% after 10 years and virtually inevitable at 15 years. That is if you're taking 0.5mg. If you're taking more than, then the risk is higher.
I suggest you read up about augmentation so you're able to detect early signs of it and deal with it before it fully manifests.
Thank you so much for your advice and support I really appreciate it.
It seems to me that RLS runs in the females in my family (not sure what the science is behind this!). It seems to have run from my grand mother to her two daughters and their subsequent two daughters, but the sons have absolutely no RLS. This is quite crazy to me! So you’re definitely right that it’s not a guarantee that my children would have RLS although I’m worried the chances are pretty high.
You’re right that my doctor did not warn about augmentation, although I have read about it a lot online. It’s definitely a concern for me although I have tried so many things - I supplement iron, other vitamins, magnesium, use a weighted blanket, have tried so many different meds etc. Pramipexole is the only thing which has made any difference. I’ve been taking it for around 4 years. I am definitely concerned about the longevity as I am only 23 years old and have been taking it since I was 19. I am also based in the UK.
You make a very good point about future treatments which is definitely something to consider! Thanks again for your advice!
Hi there, I am so sorry for your worries. My mother had RLS severely and I have had it all my life. I still feel that life was very worthwhile and at times the RLS was not quite so bothersome and then times like during pregnancies when it was extremely bothersome.As life went on the RLS became more and more marked but when I was younger most of the doctors had not even heard of RLS and so no treatment was offered, and indeed I felt that they thought I was imagining things!! I am now 79 and have several other illnesses to deal with as well. I had two children - a girl and a boy - and both have RLS. My daughter suffers more and of course during her three pregnancies it was difficult. My point is that both my children have good and productive lives and neither blames me for inflicting this upon them.
I have a sister who does not have RLS. Actually her father died when she was five months old and our mother married again and produced me. Therefore one wonders if from the gene point of view does it take two parents with the gene for RLS to develop.
Manerva probably knows more about this than me.
I would say to you that none of us know what the future holds and there are many worse things which could befall us and I would also say to you do not make this too big an issue. You only have one chance at life so don't destroy your happiness and of course things are moving along all the time and all of us RLS sufferers are extremely hopeful that answers to this horrible ailment will be found.
I do understand all your worries and I will keep you in my thoughts.
On a lighter note when I was nearing the end of my pregnancies and could not sit down because of the RLS I became so tired walking around that I resorted to putting up the ironing board and leaning over this whilst moving my feet. It was probably rather strange looking to any friends who visited but it helped me a great deal. I passed on this tip to many pregnant ladies who all found it helpful and of course the ironing board was always available to keep the ironing up to date!!!!
Wow thank you for sharing your story. Although I’m sorry that you also have to deal with this illness, it’s extremely reassuring to hear that you personally don’t blame your mother and your children don’t blame you - I think this is my biggest worry so this is really good to hear.
I will definitely keep the ironing board in mind if I do have a pregnancy in the future - thank you so much!
I would definitely see a counselor about your concerns. Advances in medicine are now occurring in breakneck speed. Your children may have options we don't even know about even if they do inherit RLS or Lupus...I also have severe RLS that passed from my Father...i am now on Gabapentin...i have a whole new life....Dont pass up your dream to have a family yet..
I have had RLS since my 20's and am now 72. My 2 children never did get it - so it isn't a given. I agree with others here that future treatments may offer so much more than wehave available today. Best wishes with your decision.
Be sure that there are superb scientists working on treatments right now, specifically on DAs that do not cause augmentation. And medications that work on the glutamate system, and soon.I believe that at least one new drug has gone to final trials - I don't remember the details, but it was hopeful.
It is entirely possible that a child, particularly a girl child, may inherit the condition. But the complex genetics is more and more understood, and it is possible that in future this knowledge could govern your decisions to continue or discontinue any given pregnancy.
Perhaps a genetic screening can already tell which genes are involved in your own problems.
Be hopeful, there is reason to be. Not this year, perhaps not next, but you have fifteen years to get it right - and you will.
I can't add to the advice you have already been given but wanted to empathise. I didn't have RLS before pregnancy so didn't face your dilemma.My son is 30 and hasn't developed it yet. Just to confirm that your symptoms will worsen with pregnancy.I found the 3rd trimester very challenging due to lack of sleep.Good luck.xx
I’m very relieved that my family RLS didn’t occur in childhood & watching a child with it must be awful. Several genes seem to be involved so I don’t know if the childhood version is different. But my Mum had it as an adult. I have had it in an increasingly severe way since late 40’s & remember it once only as a 9yr old while watching a adults very boring holiday slides & my sister has it much more mildly than me. So far my kids in their 40’s don’t have it. No one else in my mother’s family has it, ie not her parents, siblings or my cousins so inheritance isn’t straight forward. One other thing I would say is I’d be very careful & take expert advice on whether your treatment is safe in pregnancy & make plans to come off it gradually if not.
It is wonderful that you care enough about any unborn children that you wish to shield them from experiencing what we all read about in this forum. I can appreciate the struggle you are having between wanting a baby (or two or three) but knowing the high likelihood that any child of yours will have RLS--and maybe lupus. I suggest the obvious: Would adoption satisfy your maternal longings?
I’ve had lupus for 38 yrs and rls for 25, my daughter is 34 and has neither. My pregnancy was the healthiest time of my life!Please do not deny your dreams for something that may never happen 🙂
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