RLS

[dhenly]

Hi my name is Dee - My RLS is driving me mad and my husband too as I just can not sit/lay still! I have tried gabapentin - did not work. I am taking pregabalin - does not work. I have magnesium spray, medicate soap, heat patches, tens machine - all sooth and relieve for a bit but does not take away the pain for long. any suggestions out there I would be very grateful.

[beady3]

Well Dee, this is the forum to help you ,I think you need something stronger that what you are taking, I taketheNupro patch tramodol and Pregablin so maybe you need a mixture, just go back to the docs it’s a long road rls but you can get help don’t think the neurologist will help because as you will see on this site the don’t know anything ,best wishes to you x

[involuntarydancer in reply to beady3]

Sorry to see you awake, Beady. Hope sleep comes soon.

[beady3 in reply to involuntarydancer]

Thanks ,it’s this gale force wind it’s rattling my doors

[dhenly in reply to beady3]

thank you I will ask my doctor to try me on these.

[involuntarydancer]

Hi Dee, do not despair. One of the interesting thing about Rls is that there is a variety of things to try and hopefully you will find something - probably a combination as Beady wisely says - that will enable you to live a reasonably normal life. It is a slog getting there admittedly ...

What dose of pregabalin are you on?

Have you checked the list of counter-indicated medicines, foods etc to make sure you are not inadvertently exacerbating your legs?

Have you had your serum ferritin levels checked? Low iron can contribute to worsening Rls.

[kdun]

Hi Dee,

I was diagnosed 5 years ago with severe RLS, they tried me on so many different meds and nothing would touch the pain, I was going back to the Dr. every two weeks crying with the pain and lack of sleep. I couldn't sit down in the office I had to stand and keep moving my legs. I told the nurse at one of my visits that she must think that I am crazy, and she told me absolutely not and to keep coming back until they find something to help me. My Family Dr. finally sent me to a neurologist and he did a bunch of tests on me in his office. He gave me a script for Oxycodone and thank god, they work for me. It was a long, long road. But relief finally came for me. It will come for you as well, but it will take time, they will try you on different meds as they did for me. Relief will come.

[dhenly in reply to kdun]

aw bless you - I do feel your pain. Thank you, i will ask my doctor for Oxycodone and give them a go

[kdun in reply to dhenly]

Please let me know how you make out. Take care

[Lindy14]

Welcome Dee,

As Beady said this is the place to get ideas from the most highly qualified people, namely sufferers!

I agree with Beady3 that a lot of neurologists don't know much about RLS and can underestimate it's effect on the person with the diagnosis and their family. I'm grateful that my husband is so understanding as my sessions usually occur at night and involve kicking which he receives! Luckily, my neurologist has worked with me to get a combination of medication that is having a good effect like a lot that work for a while and then augment.

My GP didn't know anything about RLS and just said, "You'll have to find your own cure as I don't know". No suggestions at all. I explored a variety of things including some you've mentioned, but the pills I take wouldn't be so successful if I didn't have the bed at the right temperature. I tried the mats that work for a while, no luck.

I discovered an electric on being made that you can set at a wide variety of temperatures and work the whole night. This, together with the medication (pramipexole and Gabapentin) have worked for me for 18 months now. I also use the Gabapentin if I'm sitting for any length of time (at the cinema).

If you have a look On Line you can find the details Climsom mattress toppers. They are made by Climsom, a French firm, but look out for another on that is being produced, I don't know the make, but it works by sending water round the mattress topper to get the bed to the level of heat you select ( different of 1 degree).

Of course this is only successful if you find you are sensitive to differences in heat, but it shows that we can be experts in our own form of RLS.

Good luck, and don't give up looking for a possible catalyst for your type.

[dhenly in reply to Lindy14]

thank you very much this is helpful. I am quite impatient and this does not help me finding a cure - I am my own worst enemy! I will keep at it tho

[Fredanderson in reply to Lindy14]

The heat is immaterial. You need Tramadol.

[Retren]

I took dilaudid for 30some years and it was extremely effective ,of course I always had to carry some with me.Since my heart problems I have been banned from it and it made my life unbearable. After several years trying everything imaginable finally am on tramadol which helps.although the weight gain as a result of the drugs of previous treatments is extremely hard to get off and also to control.If it isn't,t one thing it,s another but one soldiers on.

[Fredanderson]

Tramadol always works well.

[LotteM in reply to Fredanderson]

Fred, no it doesn’t. Certainly not for everyone or for those who have augmented on it, e.g. raffs. So enjoy while it works for you - as do I - but please don’t push your point (does one say that in English?). If I have learned one thing from this forum, it is that that there is no general solution. How I wish there was!

[Lindy14]

Fred, I agree with LotteM.

The point I was making is that it is good when you can find a solution that doesn't necessarily involve more medication. I'm on a cocktail f medicine for different problems and would be quite apprehensive about adding another drug to my collection in case there is a problem with interaction. That is why, having found a solution that doesn't threaten the action or effectiveness of the medicine I take now, I am pleased. The neurologist I have seen didn't seem worried when I told her about it.

This may not be a general solution as LotteM hoped for but if we all try to observe our own bodies we might find a factor that works for us. I'm mentioning my reaction as an example.