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Restless Legs Syndrome

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Restless leg

Julia2017 profile image
5 Replies

i have suffered with restless leg since being pregnant with my 1st child he is 24 now,I thought once I'd given birth it would ease.i was wrong oh so wrong I literally can't remember the last time I had a full night sleep my strums are horrendous to point it's impossible for me to sleep I have truly tried everything possible from freeze creams &heat pads iron supplements literally everything I just want & desparetly need a good nights sleep I'm lucky if I get more than hour at a time,I genuinely can't take it anymore it's driving me insane I end up in tears at least once a night it's made me seriously depressed Please help

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Julia2017
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Kaarina profile image
KaarinaAdministrator

Hi Julia,

I am so sorry to read your posting. Are you taking any medications that may be aggravating the RLS? Anti depressants, anti histamines? Here is a list of some of the medications that can made the condition worse: rls-uk.org/treatment/

Have you had your ferritin levels tested? For those suffering from RLS they need to be higher than normal ie at least 70 or above.

Some people find that taking magnesium can help.

There is a much anticipated programme on RLS Desperate for Help that will be aired in the UK on Tuesday, 4th April at 10pm on Channel 5 (it will also be available on catch-up if you miss it). I hope you will be able to watch it.

I am sure others will be along soon to help and give you good advice.

CAZ33 profile image
CAZ33

Your story is so like mine Julia I too started to suffer when pregnant with my first son who is now 25. It is also in my family and we are all hoping that this TV documentary on Tuesday opens peoples's (GPs - some know very little) eyes to what we go through night after night with no let up. I expect you, like me, wish to have one night where you can sleep and not spend hours going through all sorts of emotions, feeling like you are the only person in the world going through it. One night just to remember what it feels like to go to sleep and wake up and feel your body has rested and you can have a day of being able to do things and have some energy. I have a very supportive husband but I am sure there must be a lot of RLS sufferers who's partners have left them on account of this and that is the other side of this condition, the mental stress of trying to have a 'normal' life and all that goes with it and yet being deprived of sleep which the body needs to function.

I have spoken to many doctors, nurses etc and I say this condition is not life threatening but it is life changing. I am so hoping this program brings awareness and something positive.

I totally understand your depression - you would have to be made of iron for this condition not to affect you. My family are my reason to keep battling on. If you need a friend you can email me personally.

Hope this helps you not to feel so alone.

Joolsg profile image
Joolsg

Hi Julia,

You are not alone. As Kaarina says, have a look at all the meds that can make it worse. Alcohol, caffeine and chocolate also make it worse for most people.

There are meds that can help, but if you want to try the non med route first, ferrous bisglycinate( solgar gentle iron from Holland &Barrett) taken on an empty stomach last thing at night helps some people, and others say following a low FODMAPS diet helps.

Your GP can advise on meds which can help so direct him/her to the section on here for professionals using link Kaarina has posted.

You should be able to get relief and sleep soon.

Take care,

Jools

Diamondeye profile image
Diamondeye

I was in the same boat years ago. It took years for me to find a drug that would work long term. Unfortunately or fortunately because I get my rest I take Oxycontin 20 mg twice a day. It is the only drug that has worked for me and I've been on it for about twenty years.

You must discipline yourself not to abuse the drug and I have been able to do that.

I take Oxycontin during the day time and methodone 10 mg while I sleep. Doctors can't believe that the two drugs work, but they do.

It is difficult to find a doctor that will prescribe oxycontin because of the bad press but stay vigilante and you will find the doctor.

Hope this helps you.

Your rls sounds out if control. You need to explore medications to help with your legs. If your GP is dismissive (which is sadly far from unusual), maybe you could bring someone with you to help persuade the doctor that you need help. Arm yourself with as much information as you can. Order a copy of Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer et al and bring that with you. It is no life at all to live as you are currently. You can definitely improve on it with meds - they don't solve everything but they can make a big difference.

Well done (to you and to Caz33) for getting your son to adulthood while suffering so considerably with this awful condition.

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