27 year old suffering with RLS

Hi,

I'm 27 and have had RLS for over 10 years. My RLS begins at night time and disrupts my sleep more often than not. It generally starts about 9.00 pm when I'm winding down for the evening. My life style is generally quite healthy, I exercise most days, eat well and sleep an appropriate amount (when I don't have my RLS symptoms)

It's gotten to the point where my wife cannot sit by my during the evenings or on some occasions I have offered to sleep in a separate bed due to my increasing RLS though the night. I don't know what to do as I feel going to the doctors will be a waste of time?? Anyone have any answers for me

Thanks

10 Replies

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  • Hi and welcome, There are lots of treatments for RLS and the subject is vast with people having different responses. I would start by going to rls-uk.org for accurate information and doing some reading up as well as looking through the posts on here.

    A few basic questions would be do you take any medications for anything else as many can make RLS much worse? Have you had your ferritin iron levels tested? Have you a family history of RLS? .There are many meds to avoideven over the counter ones.

    Unfortunately most doctors don't know very much about RLS so we often have to educate ourselves and then educate our doctors!

    Pippins2

  • Thank you for replying to me. My mum suffers with it also but not as bad as me. I do take medication but to be honest it hasn't made it worse just the same as before I started taking the medication. Thank you I will do some research

  • Lou1989 I suspected a family history due to your young age of onset so you will have the Primary (genetic) type of RLS as opposed to Secondary. It is important to get your Ferritin iron levels tested as some people benefit from iron supplements. It needs to be over 50 preferably over 70 which is much higher than that of someone who does not have RLS.

    Many find painkillers from the opiate family very helpful eg Codeine or Tramadol. They work on the urge to move sensations as well as on pain. You can buy Co -Codamol over the counter if you are in the UK. The amount of Codeine in it is tiny compared to prescription strength so may not help but it is worth a go for occasional whilst you read up and get to the doctors. Some find any gel /cream /spray etc containing Menthol helpful

    Let us know how you go on

    Pippins2

  • I take magnesium supplements as part of the cause could be a magnesium deficiency so it may be worth trying. I've had RLS since I was in my 20s and I'm now 61 and it has become much worse. I can be up all night with it and my husband has to cope with me with my legs jumping about on the sofa or in bed. I now take a fairly strong dose of Pramipexole, which helps a little and Pregabolin at night. My father also suffers from this and so I blame him! I am waiting to see a neurologist so I will let you know how this goes.

  • Thank you, I think I will look into the magnesium tablets.

  • I would go to the doctor as many are very good and knowledgeable. I know some are not, but mine have been helpful. Pramipexole has definitely helped me although I still suffer and the Pregabolin helps me to have a decent night's sleep.

  • Marita- what is your record with the Prami? You say you're on a high dose?

    Just that it sounds like you may be in bother if a high dose is not giving relief.

    Cheers.

  • It is defintely worth taking action to address your rls - it is a horrible condition to suffer from and you are so young. You do need to inform yourself very well however before interacting with the medical establishment as it tends to be poorly understood as a condition and unfortunately also overly easily dismissed. So browse through the forum; look at the websites. Have a look at the replies to medical questions by Dr. Buchfuhrer on the SoCal website - I found these very informative. It may also be worth investing in one of the two medical textbooks to which Dr. Buchfuhrer has contributed recently (sorry I can't recall the names but a search should show them). Definitely consider your iron levels. Improving mine (from less than 20 to 79) has made a huge improvement in my symptoms although it is also worth bearing in mind that there is a small minority for whom improved iron does no work.

    There are some drugs which can help including dopamine agonists (ropinerole, pramipexole, rotigotine etc.), a2delta ligands, most usually pregabalin (Lyrica) and opiates. Be cautious about the dopamine agonists - they can be very effective but they do eventually turn and start to feed the condition in a phenomenon known as augmentation. In addition, on the dark side (if you live in the UK or Ireland), kratom and cannabis can be very helpful.

    There are also medications that can exacerbate and other substances - alcohol is often implicated and excessive sugar consumption and it is definitely worth checking that you are not inadvertently making your condition worse.

    Marita, you should consider addressing your pramipexole dosage if it is over .25mg as it may be responsible for your bad symptoms.

  • I have read that taking a bath 30 minutes before bedtime helps. I don't have a tub so I can't try it. Let me know if it does help.

  • There is help to be had. RLS is a neurological condition, so you need to talk to your doctor and possibly get a referral to a neurologist or a sleep doctor, since RLS is also considered a sleep disorder that is movement related. rlshelp.org Are you in the US or the UK, or elsewhere? RLS gets worse in the evening because it follows your circadian rhythm. Our dopamine drops at night, so RLS gets worse at night.