RLS symptoms

[catherinem13]

I used to find it really hard to describe what my actual 'urge' to move my legs felt like, although after reading online I would say that since birth it has been a 'pulling' or 'tugging' feeling in my thighs. However over the past couple of days I've been feeling this creepy crawly feeling and today it feels like my thighs are burning as if I've put deep heat cream on them! I know that these are typical symptoms of RLS but I'm worried because I've never felt these before and my own symptoms are changing and I don't know how to deal with them. So I was wondering if anyone else feels like this, or has had their sensations change and how they coped with it???

[jeanjack]

Hi Leighcath13, I was about 18 ( I am now 65) when I first started with RLS although I did not know what is was at the time. I just knew that whenever I was tired I had this irresistible urge to move my legs to get some relief and I agree it still is difficult to describe the feeling of needing to do it. The feelings then progressed to what I call a "bubbling in my calves" as well as the usual urge to move.

I have been on Pramipexole 0.88gms for about 8 years and now although I don't get the bubbling any more it has been replaced with aching calves and hot burning feet together with the usual urge to move my legs and now sometimes my middle torso. I have now added in a 30/500 cocodamol tablet as the restlessness has gotten worse recently. Neither of these drugs work for 100% of the time but my RLS is at least manageable. It only affects me when I go to bed or in the evening when I am particularly tired , my ferritin levels are okay and no one else in my family has it so I don't really know why I developed it.

However it seems that this dreaded affliction does tend to change and move as the years go on and so I think that is what you are experiencing with the changing feelings in your legs. The best advice I can give is to read as much as you can about RLS and the treatments available, read about the experiences of others on this site and then educate your GP as in my experience not many of them know much about it or know how to treat it. Don't suffer in silence but keep going back to your doctor to get the right treatment for you.

I wish I had known about RLS when I was your age as it took me years of suffering before I stumbled on the reason and saw my doctor.

Good luck

Jean