Parkinson's and RLS

[Lizzie7]

Does anyone experience Parkinson's and Restless Leg Syndrome? (Or Restless Body Syndrome). I don't recall experiencing RLS before I had taken Parkinson's meds. It has developed so that I seem to experience (in my off state) a painful stiffness though with an overwhelming need to move my body (Restless 'Body' Syndrome) and a painful persistent tremor. To say that I don't know where to 'put myself' is an understatement and it is excruciating. Does this sound familiar to anyone? I was diagnosed in 2004, then aged 44.

[alicekeff]

yes my husband has pd ,he has only had it for 2 years but he some times has restless leg and body movement in his sleep.he has a lot of pain in his body and is now taking lots of pain tablets the doctor gave him.i would ask your doctor if he can help with your pain.

[isis6361]

It's quite common in parkinsons and if you look at a copy of the NMSQ questionnaire it is a question on there to be asked. It can be treated with low dose dopamine agonists but there are also there's drugs like gabapentin but these need to be discussed with your consultant.

[PositivePen]

Yes I also have restless leg/body syndrome with PD. Worst at night. I tried a dopamine agonist but suffered unacceptable nausea. I have now been advised to take a half dose of Sinemet if I need to during the night - I normally take a 250 mg at breakfast and 125 mg at lunchtime and dinner. If I wake up and am restless I now take 125 during the night and another 125 when I get up in the morning, thus not increasing the overall intake. It seems to work.

[grey in reply to PositivePen]

I agree with positive pen, Sinemet reduces lots of aches and pains, including those of restless leg for me. I find normal pain killers do little to alleviate the discomforts of PD and Restless Leg.

I now take the controlled release version of Sinemet at 10 pm, and the benefit of the slow release of L-Dopa lasts most of night. I go to bed about 10:30 pm when the slow release kicks in and manage to get good quality sleep most of night, waking around 6 am, rarely before 5 am. A vast improvement on the 4 hours per night I achieved before adopting this strategy.

I don't see why this should not work with other PD medication which supplies levodopa, I just happen to be on Sinemet.

Grey.

[Donzim]

Maybe magnesium? Good for rls.

[TL500 in reply to Donzim]

Please try magnesium, or calcium with magnesium. It seems to help. If you like to go for non-drug, try fightingparkinsonsdrugfree..... It took me months to rid of rls. Touch wood.

Also try John Pepper's suggestion etc.

Please disregard if you don't like non-drug alternative.

[cabbagecottage]

Sinemet cr along with Amitriptyline . Certainly works for my husband

[Lulu14]

T have a terrible time getting into a comfortable position in the evening. It is much more than restless legs, more like restless body. Sometimes I find myself just flailing about in the bed trying to get into a still position. My cramping left foot has been my biggest problem from the start of this adventure. Sometimes I can get in a somewhat comfortable spot and just bend my foot in the opposite direction it is cramping.

Most of the time I will take 1/2 a sinemet and 1/2 clonazapam or alprazolam.

I'm seeing a new movement specialist at the Mayo clinic in a couple of weeks. I hope for something to relieve this. The flailing about is really upsetting, and depressing as many times I kick myself in the shins and knees and my legs are all bruised.

[Beckey]

You bet! It's a creepy-crawly feeling and it keeps me up all night. Maybe a good way to describe it is to say it feels like electric jolts. The doc told me to take a 5 mg. oxycodone each night before bed, but over the long haul, isn't that bound to be problematic?

[grey]

In all these cases it would be interesting to know if a formal diagnosis of RLS has been made and was it from a competent clinician. I suffer aches and pains in the legs and feet. This has been diagnosed as a mixture of RLS and dystonia.

I am aware of the dystonia in my feet, classic clawing of the toes and can cause extreme pain as the foot bends to positions I would not have thought possible without serious damage to the foot.

I'm not so sure of RLS, are the other aches and pains RLS or dystonia? Often I read here and other places people who confuse dystonia and cramp. Both can be very painful but are very different and respond to different treatments.

Similarly others confuse tremor and dyskinesia. They result in unwanted movements but that's about all they have in common.

As I sit here, my toes are waggling uncontrollably as they were recently during an assesment being carried out by an experienced PD nurse. She put it down to dyskinesia, I think (if I can be so bold) she was wrong. Dyskinesia is random, this is very repetitive, but she changed to tremor. I don't suffer tremor elsewhere and know this to occur when going on and I'm about to experience the delights of dystonia in my feet. This I think is a learned reaction, the toe waggling helps reduce the dystonia. Excuse me, I've got some pain to manage....

10 minutes later, it happened as predicted, now hot and sweating, I'm about to go on and will be heading for bed pain free.

Point is, unless you have a competent diagnosis you can't treat the ailment. Obvious yes but....

[JWebb994]

I am currently seeing a new movement disorder doctor for my Parkinson's. He specializes in RLS as well. I have always believed that my restless leg was related to my senimen wearing off.

My previous movement disorder specialist said it was dyskinesia and would not increase my meds. Anyway, my new doc increased my CR med and it has completely stopped. It is such a relief because I was not sleeping at night and would get up and walk for about an hour or more in the middle of the night. Lack of sleep was causing serious memory problems.

If for any reason, I don't take my meds on time, it gets really bad again. {unusual but on rare occasions) When that does happen, I get in a warm, almost hot bath and stops the pain that comes with the stiffness related to it. I will continue to kick a little when I first get in the bath probably because of the med not taking effect yet. I also use Epsom salts in the bath and I also take magnesium.

I also have problems with my toes curling up. I usually walk to get that to stop. I also do not have any measurable tremors.

I like the term, "seen one Parkinson's patient, you have seen one Parkinson's patient!" since our symptoms are all slightly different.