Hate the downs of the ups and downs

cornelia · Post by **cornelia** » Tue Nov 02, 2010 11:20 am

O Ann, tell us about your experience in the longer run about 2 off 1 on (which I agree would be best for the DA receptors.
Corrie

Andreadrea · Post by **Andreadrea** » Tue Nov 02, 2010 7:25 pm

I don't know much about RLS yet, but I'm sorry you're having a worse time with it now.

Post by **ViewsAskew** » Wed Nov 03, 2010 4:40 am

Andrea, I hope you never have to know more!

Post by **ViewsAskew** » Wed Nov 03, 2010 4:44 am

cornelia wrote:I just received dr Chokroverty's new RLS book in which he questions deep brain stimulation for RLS. There are only isolated case reports of its use in RLS. Furthermore, as opposed to Parkinson's disease, RLS patients do not have loss of nerve cels in the basal ganglia, That is why he questions the rationale for use od DBS in RLS. It is a far from my bed solution, but if they are going to ue it in future I will be the first one to be a guinea pig and I guess some of you too!
Corrie

Interesting about DBS.

I didn't know he'd written a book, either.

rlsfirefly · Post by **rlsfirefly** » Sat Nov 06, 2010 12:41 am

I hate to see anyone in such misery. I hope things get better for you and also hope that what I am about to say doesn't get me killed. I am not a doctor, I have no medical training. I also have a friend who is on huge amounts of drugs and medications for another similar problem to RLS. He takes enormous amounts of sleep medication that seldom helps. If it does, it works around 5:00 am and he sleeps a large part of the day away and then is groggy. Again, I am not a doctor and this may not be even close to what you are doing but it makes me wonder--if the medication isn't working and/or causing other problems, why take it? For him I wonder which would be worse, being miserable taking the medication or being miserable not taking the medication. I would never suggest someone stop taking anything without talking to their doctor. I just get to wondering sometimes.

I hope that things get better for you. If I had that majic answer, I'd certainly give it to you.

Post by **ViewsAskew** » Sat Nov 06, 2010 3:08 am

I don't know where you live, so I can't kill you.

In all seriousness, I do not take anything I am not prescribed and do not take anything in amounts higher than prescribed. Most importantly, I work out everything I do with my doctor. While I am at the high end of dosages for opioids for RLS, this is very little compared with how much is prescribed for pain. People on methadone for heroin replacement take 100 to 200 mg a day in some cases. I take 20.

The answer to why take it? If I managed to not kill myself, I couldn't work. I couldn't have any relationships. I basically would be non-functional.

While my life is far from what I wish it were, I do own my own company, I do have a wonderful marriage, I do have excellent friends with whom I can spend time.

thank you for helping put it in perspective.

rlsfirefly · Post by **rlsfirefly** » Sat Nov 06, 2010 12:19 pm

I don't tihink I did put it into perspective, I think I just upset you which was not my intention. Each person has to know their own body and what does and doesn't work. Obviously you do! My only observation was meant to be an overall one: if it isn't working why take it? I just talk to too many people where their doctor keeps adding another medication then gives up when it doesn't work.

Post by **ViewsAskew** » Sat Nov 06, 2010 4:30 pm

No, you didn't upset me. I'd say so if I was upset. You did put it in perspective - I was whining and it helped me to see it in comparison if I didn't have anything.

cornelia · Post by **cornelia** » Sat Nov 06, 2010 8:00 pm

Does anyone actually know why RLS patients are not 'allowed' higher doses of opiates for their RLS complaints like pain patients (unless they can't live with the side effects)? I know addiction can be a reason but isn't that for pain patients likewise?

Corrie

rlsfirefly · Post by **rlsfirefly** » Sat Nov 06, 2010 8:47 pm

in my opinion it's just because RLS isn't seen as a "serious disorder" by most in the medical profession or public perception. That needs to change but we all know that is not easy to do.

Post by **ViewsAskew** » Sun Nov 07, 2010 12:53 am

I don't have a clue, either.

Post by **badnights** » Sun Nov 07, 2010 7:38 pm

I think some of us might eventually push that envelope on how much of an opiate can be prescribed for RLS :cry:

and researchers are already investigating the involvement of the body's pain mechanisms in RLS.

Just to be deadly clear on why we take meds when they don't work well: the RLS symptoms are so severe and persistent that sleeping, eating, communicating, and any kind of functioning at all becomes impossible. It's a very, very serious condition to be in, effectively like being tortured incessantly, and I think I would be lucky if I survived a week.

Andreadrea · Post by **Andreadrea** » Sun Nov 07, 2010 7:55 pm

Agreed, Beth. The month that the Mirapex worked was like an amazing vacation from RLS. I hadn't realized how much the RLS affected my whole life until I got a break from it. Now I'm on a "vacation" from meds until I see a neurologist, and the constant symptoms are pretty awful. I'm willing to try anything that might work even halfway.

rlsfirefly · Post by **rlsfirefly** » Sun Nov 07, 2010 11:45 pm

There is no doubt that RLS is devastating and that most of us would do anything to get relief. It's a shame that it has to be that way. I am not nor will I ever criticize someone for the medication or treatments that they use in order to function. I was not accusing anyone of whining either. Good grief, I have RLS--I KNOW what it is like. Besides I thought this was a place where you could do that if you need to and people would understand. So far I just seem to rub people the wrong way when all I want is to find a place where I fit in. Regardless, this seems to be a good board with caring people. I have only posted suggestions, not criticisms and have tried to put positive things in. I'm not sure this is the place for me since I don't want to upset the people who have been on here so long.

SquirmingSusan · Post by **SquirmingSusan** » Mon Nov 08, 2010 1:16 am

Firefly, I haven't seen that anyone seems the least bit upset by your posts. You don't seem grouchy either, just inquisitive. I know that in an online forum it's easy to read things into people's posts that aren't there and I think all of us do that at times. It seems like you're expecting us to react to you in a certain way. But this is a caring, concerned group of people, all of whom have RLS, and are just looking to help and answer questions.