rls is an awful disease

[pattyczar]

just started nuepro this week. seems to be working. i did try kratom the red one however my blood pressure got high not sure if from kratom so i am keeping track of it. was on requip for 10 years. no longer works. i hate rls. it sucks.

[martino]

For some reason i couldn’t manage Ropinirole or Pramipexole but I get on fine with Neupro

[pattyczar in reply to martino]

seems to be working well so far. glad it works for you

[Lindy14]

You're telling us Pattyczar!

No, but seriously, we do understand. Unfortunately, this neuro disease is not some "physical thing that can conveniently get better with just on set of medicines. I'm sure I've not been alone when I had to try things, modify the dosage, and try again. It will take a while, (mine took at least 2 years), but if your neuro is trying things out the pair of you should be able to come to some combination that eases things a bit.

I did find that it was worth noting anything that aggravated my jerks. The main thing for me was how hot my legs got in bed, (I'd wake up in the morning having kicked off all the bedclothes. But I found a gel mattress topper did ease the legs for the first 2 hours in bed, although my legs "ate" up all the coolness from the topper and my jerks would start.

However, I now use an electric one that works all night and I'm sure my pills wouldn't last the whole night without the help of the topper. These have been improved of late, but as they are expensive I'd advise you to only try one if you are certain your legs get hot.

Look at other people's notes, there are some useful ideas that might ring with you,

Let us know how you get on,

Lindy14

[Matrix in reply to Lindy14]

Lindy would you mind telling me which electric mattress you have and how much it cost please .Thank you . X😇

[Lindy14 in reply to Matrix]

Hi Matrix,

Don't worry, I'm not an agent for any products! When I got RLS I had to hunt around for myself. As i said, the only thing that seemed to meet my needs was a mattress topper. As far as I was aware, there was only one on the market.

It's made by a firm called Climsom. It's a French firm, but still, what I needed was something that would keep working all night, as well as working at the temperature I needed. The system is one that uses water which circulates through tiny tubing through the topper to cool down the body heat. Initially they only had a full length mattress topper, I was willing to suffer the heat cooling all over me during the night rather than nothing.

The pointers I like are:

a) it works all night

b) you can regulate the heat to a wide range of temperatures

c) the instructions can be operated using a remot controll

d) the noise made has been reduced considerable and I notice my husband not remarking about it since I bought a new once last year.

I got into the habit of taking with me on holiday. My husband suggested once that as we were only going away for one night I wouldn't need it, but he soon realised his mistake as I had a lovely bout of legcycles, which he received!

I then found out that the website used by Climsom was closing down and hurriedly bought a half-size topper which works well for my legs and also treat myself to a new engine as it had become very poor, but being over 3 years old, and used every night I felt it deserved a rest!

Thanks for your email as I have just found out that Climsom has opened a new website. The address is climsom.com. The prices of the system look as though they have gone up, being 360 + euros for a single topper and operator.

I hope this is sufficient

[Matrix in reply to Lindy14]

Thank you so much I have seen the post below too.Thats so good of you .Its horrible having RLS isn't it .Off to investigate .xx😇

[Lindy14 in reply to Matrix]

I couldn't agree more. It is good to find you've done some investigating and are one step of the doctor for a change. When I told the neuro I was seeing she queried whether it was actually having any help so I told her about the results where i tried without it do to my husand's marvellous suggestion and his reaction when I got a real kicking!

But seriously as i can see from all the letters from other people, the treatments are not a one type fits all so we all need to look for our own unique presentation. I also have epilepsy (not related to the RLS), and have to be careful that any medication I take doesn't interfere with each other. This is one reason why I was keen to explore other problems that would not need to be treated using medication.

Come on Poirot, get investigating and let us know how you get on!

Regards,

Lindy14

[Matrix in reply to Lindy14]

Lindy I take cabermazapine for epilepsy but I take it for trigeminal neuralgia severe pain in face and they are strong meds , I also use for nerve pain oh how sick of pain I really am . Xx😇😘

[Lindy14 in reply to Matrix]

Hi Matrix,

I'm also on Carbamazepine for epilepsy, but have to have the Tegretol prolonged version as the generic versions don't work. I tend to have the fits at night so I'm taking 200mg in the morning and 400mg at night.

For the RLS I take Gabapentin 200mg at night and the neuro said I could take 100mg prior to the times when I'm sitting for any length of time (I usually find taking it at least an hour works for me).

As you are also on other medicines, you would have an excellent reason for being referred to a RLS specialist for a consultation.

Again, good luck,

Lindy14

[Lindy14 in reply to Matrix]

Sorry Matrix,

I forgot the names of another firm you might want to look at.

the website is : nosleeplessnights.com

They do seem to acknowledge the needs of those of us with RLS, but it's a good idea to read what they say about the workings of each product.

Lindy14

[Matrix in reply to Lindy14]

Thanks x

[pattyczar in reply to Lindy14]

I have had this disease since I was in my teens I am now 62 It was not diagnosed until 1999. I have tried many variations of medicines since 99 and even a research study for rls. my legs do not get hot. but thank you for the info. the nuepro seems to be working quit well for the last week. I just wish i knew what the cause of this problem was so we could have a chance of fixing it. I watch my food. don't drink quit smoking. etc..... This disease has ran my life for way to long. Had to be self employed in order to have freedom of movement when ever i needed it. there have been many other life changing developements all my life that could have been avoided if i knew what was wrong with me. Anyway, thanks for reading. i will let you know how the nuepro works over the next month.

[Joolsg]

Did you switch straight to the Neupro patch from requip or did you reduce the requip first? I'm curious as a lot of people come off requip completely and have a break of a few months before starting on Neupro.

I'm glad the patch is working for you. Long may it continue.

[pattyczar in reply to Joolsg]

Straight from requip to nuepro. 2 mg. Its nice so far because it is a patch that works throughout the day Requip was for only at night. Thank you and I hope you are doing well