I've noticed that different members get different manifestations of symptoms for this condition. I also noticed that there are many different ways people manage living with this condition, so I thought it might be helpful to start a thread about it. I know I, for one, am still using trial and error methods especially when trying to manage a flare up and would welcome hearing other's ideas on how they manage theirs.
There's 2 things I've established for certain; chocolate and caffeine make it worse (OMG, I miss chocolate!) Another certainty is that some medications flare it up.
I tried a TENS machine which worked for the first couple of times with helping the leg muscle contractions, but then just got too annoying for the electricity part of the RLS to handle. I think the muscle contractions are the worst part of this condition for me cos they make my legs really painful both at night and during the day. There's also electricity running running up and down my legs constantly. The agitation and need to move waits til nighttime to start.
Rubbing pain relieving gel from the physio on my legs during the night gives a bit of relief for short time. My husband has started to massage capsicum pain relief cream into them when I first get into bed for the past few nights and that seems to give some relief for a few hours combined with taking a Paxam. It has been rather hilarious all the different ways we've been trying to do this massage without him hurting his back ( hmmm...where's a portable massage table when you need one The latest is me lying at right angles to the bed with legs on chair beside bed and him sitting on office chair from the study! But this is not quite working for him so it will be back to the drawing board for tonight's session!
I've tried midnight stretches and laps around the kitchen island bench, high potency magnesium powder, B1, B12, and Folate, but with only short term or or no perceived relief.
The RSL has been there constantly for the past couple of years. The only thing that fluctuates is the intensity.
I wondered if anyone else has tried something that works for them that I haven't tried?
I have had RLS all my life, so it is not related to my CP; although both are neurological conditions. My mother and grandmother both had it too, so I am assuming that mine is hereditary. I don't have the same symptoms as you though. I have an intense urge to move the affected leg (can become both legs and even arms at its worst). It is relentless and there is no way to get to sleep until you are virtually exhausted from thrashing around. It is best to get up but that doesn't work if I sit down.
The really funny thing is that it tends to come in cycles. A couple of months ago, I had it every night for about 3 weeks. I was at my wits end when suddenly it stopped and I have not had it since. It is the most unpredictable, annoying thing. I do believe that, in my case, Lyrica actually helps it. The flare up may have been caused by me lowering my Lyrica dose in the daytime. Who knows.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Different again mine caused by nerve damage and scarring in the back mainly sciatic nerve, discs are still bulging and when I lay down they pinch the nerves further causing back spasms that radiate down the leg, getting less now except first thing getting out of bed.
You know what Mary and Don, the more I read on our forum, the more I have admiration for those small amount of doctors (aka heroes in my book ) who take on the mammoth challenge of treating CP. Not only are each of our individual conditions so complex, the way our individual symptoms present are so unique also.
It was actually Lyrica that gave me RLS as one of its adverse side effects and I have been left with this condition ever since despite ceasing Lyrica since early 2011! Ever since then the RLS symptoms are there every single darn day, but flare up worse with trials of some medications. This latest flare up was from Tegretol; stopped about 3 weeks ago, but flare up still going strong. Seems to take ages to settle down again if a medication flares it up
Fee medication has the residual effect that can stay in your body for months, leaving with the lasting side effects, taking just one endone will show up in drug tests a week later.
And on doctors what makes it even harder for them is when they get patients like you and I that just leaves them scratching their heads at what to do, they want to be able to help but don't know how.
They then try you on even smaller doses trying to get your body use to medication in the thought that slowly increasing will make less of an impact on sensitivity, and get an even bigger shock that even small doses have the same reaction.
Damn permanent side effects! Endep gave me restless legs and it was the worst thing ever - I feel for you! It also gave me tinnitus. The RLS has gone but the tinnitus has stayed (and not gone away since April 2011) RAH!