There seems to nothing anybody can say to do when R.L.S starts up.
I try very hard to walk a bit,can’t walk outside cos I might fall over,I just crumble in a ball in pain,but you feel as if you have to do something,cos there is absolutely nothing that helps me,I,m going crazy with it,no relief for me,standing up all night is very bad,but you can’t lie or sit,
It amazes me that they can send people to the moon but they can’t find a solution to this awfull disease
Forgot to mention I am on lyrica too,the doctor wants me to take two every day
I certainly will,I am writing down all the questions I need answers too,I hope I get some answers,also I am going to ask him if there is any drug that a doctor will give to a person who has chronic R,L,S because my question to him I would like to visit my sister in australia,it is a 15 hour flight and some,my sister is in a home now,and has the start of dimentia,I want to go and see her before she forgets who I am,it’s been a long time seeing her,we talk on Skype,but it’s not quite the same,would there be something I can just take,even if it is just one way,so I can make the journey,I had to see my brother in england last year,the journey back was just horrible,I would have jumped out of the plane if I could have, Without a parachute,there must be something they can give me,to even sleep most of the way☹️😣😖😤😭😢 
I really hope so,
. It would be wonderful if you could see her. - Lori (Team Member)
I have a neurologist that has been the one that started me on the opioid,and has been looking after me for 2 years or so,I am seeing him in person in few weeks time,it has been usually on zoom meetings,I am hoping he examens me
I have a lot of questions to ask him,do you realy think they realy know what we are going through,.?Hi
. As much as doctors try, I don't think anyone can truly comprehend what someone with a chronic illness goes through unless they have experienced it or experienced something like it. Have you considered writing down your questions for this appointment? It's easy to forget what you meant to ask once an appointment is underway. I hope it helps to see the doctor in person this time. Let us know how it goes if you don't mind. I will be thinking of you. - Lori (Team Member)
Thankyou so much for your helpfull comments,it realy fantastic for me to be able to talk to someone who understands,when you say to people” I have restless leg syndrome “ they just look at you as if,what on earth are you complaining about.I am going out tonight to a meeting,I,m just hopeing my legs do not start doing there thing, I can look like I,m a spastic,
There is no one I know who can understand unless they see me in a stateI am glad we can help,
. I hope the meeting goes well tonight and that you don't experience symptoms. Warmly, Lori (Team Member)
Hello,I have been on the nuepro patch for a couple of years,3 mg,once a day and when that was not sufficient the specialist put me on Buprenorphine,I am still suffering,not every night,some days it’s quite good,but when it’s bad I crumble,I have had 2 nights of no sleep,mostly standing,it’s a long night,I try and watch tv standing with the support of my kitchen island,and I tend to eat ,I am so depressed,
Hi
. Buprenorphine treats pain and sometimes helps RLS symptoms, but it is not effective for everyone. That's the problem with this disease. Everyone reacts differently to different treatments. There is a lot of trial and error involved. Is your specialist a neurologist? If not, you might want to ask for a referral. If you do have a neurologist, maybe a second opinion from another doctor would be a good idea. Sometimes, a fresh perspective can mean new treatment ideas. Your depression is understandable and it's something your doctor really needs to know about. This is significantly impacting your quality of life. You need to be on the top of that doctor's priority list. Is there someone you can reach out to for more support, like a family member or a friend? If it ever gets to be too much, please call an ambulance or go to the ER. Lack of sleep can make your depression much worse. You might need extra help to get through those periods. Please know we are here for you whenever you need us. Sending lots and lots of gentle hugs your way. - Lori (Team Member)
