Restless Legs Syndrome

[Sonja]

I have had PD since August 2007 and have been prescribed Madopar 4x daily and sinemet half a tablet at night 2x. I have had RLS for many years but since PD they have been even worse to the point where they are frequently Restless all day but mainly in the evening. I have read to exercise a lot for my PD but the more I exercise the worse the RLS gets. Does anyone else have this problem or has had it and knows how to prevent them being so Restless? I am exhausted as with RLS I cannot sit or lay down for any time.

[norma g martinez]

Hi
Im Norma I Know What You Are Going Thru Im So
Tired I Cant Sit Icant Sleep I Just Cant Stay Still
Hang In There .

[jaynjer]

I have had PD since August 2007 and have been prescribed Madopar 4x daily and sinemet half a tablet at night 2x. I have had RLS for many years but since PD they have been even worse to the point where they are frequently Restless all day but mainly in the evening. I have read to exercise a lot for my PD but the more I exercise the worse the RLS gets. Does anyone else have this problem or has had it and knows how to prevent them being so Restless? I am exhausted as with RLS I cannot sit or lay down for any time.

Dear Sonja,
I too have had RLS since 2002. My doctor prescribed Requip which helped very much. With my diagnoses of PD I am still taking Requip. Good Luck.

[Garysimmons464@talktalk.n]

Hi Sonja
Beryl (my wife) has suffered RLS for over 4 years and was prescribed Requip as well.She takes 3 tablets spaced out evenly over the day and a double dosage at night before retiring to bed.This has made a great difference to her and it is now much less of a problem.She is on the smallest dosage tablet at the moment so there is still scope for further relief in the future if needed.

Love Gary

[Garysimmons464@talktalk.n]

Hi Sonja
Beryl's RLS and accompanying burning feelings had recently taken a turn for the worse and the PD "expert" couldn't come up with any medication to help.BUT we have found that ibuprufen gel has given her great relief and it only costs about a £1 per tube -it also seems to help with her involuntary leg movements as well.(thats a bonus)
Love Gary

[dlmarcoux]

Have you tried a higher dose of Sinement? I take 50/2oo CR every 6 hrs it seems to control the legs from jerking.

Doris

[Garysimmons464@talktalk.n]

Hi Dimarcoux
Beryl is already on 3 different medications for her PD & RLS problems so the specialist isn't keen at this stage to add or change her medication.We are currently concentrating ( with some success) on alternative therapies such as John Coleman's Recovery programme and are hoping to reduce the drug taking gradually over time to enable the body the opportunity to heal its self.We have decided not to allow the PD symtons to be treated by increasing drug taking(the traditional method) but instead treat the cause by eliminating the problem.This is hard work and the most important part is maintaining the belief that PD is reversible.We have total commitment.
Love Gary

[Garysimmons464@talktalk.n]

Further to my earlier comment on using ibuleve gel to relieve RLS symptons we have been using the gel to see the effect it has on PD and I am amazed at the relief Beryl gets as it quickly relieves both the pain and involuntary movements she gets when PD tries to take over.She is delighted !
Love Gary

[heather]

hello Gary
http://i10.photobucket.com/albums/a126/maesisaf/hellowelcomeback1.gif
I'm so glad to read your good news, and I'm sure others will be as well
Take care and please give Beryl all our love
http://i10.photobucket.com/albums/a126/maesisaf/friendsros146.gif

[Juanita Mullin]

Gary, what is ibuleve gel? It's good that is helping Beryl so much. Juanita :):)

[Mary]

Juanita
If you cannot get Ibuleve let me know I will send some over
Mary

[Garysimmons464@talktalk.n]

Juanita
If you cannot get Ibuleve let me know I will send some over
Mary
Hi Juanita
there are a number of product names for the gel ,such as Radian B and Ibuprofen Gel.I think the 5% of ibruprofen in the gel is what does the trick as it is a well known painkiller and tends to desensitise the skin or nerve ends in the area where you apply it.I dont know whether it will work on everyone but it certainly works for Beryl .
We are seeing the PD specialist next week and will be interested in his response to it.He had tried other products on Beryl in the past with no success and told us that he couldn't help and that she would have to live it.This was like a red flag to a bull for me.I dont think you have to accept anything.
Love Gary

[Juanita Mullin]

Thank you, Gary, for the information. I will check to see what is available here. Juanita :):)