Meds/life/RLS/ just need an ear...Please someone
Posted: Tue Nov 30, 2004 6:53 am
Hi everyone, it's been a while since I've been here. The last time I was on here was when I was changed over to Neurontin from Sinemet.
This is long so please bare with me, I truly feel like I have no one that understands or am able to talk to about RLS.
I found out after doing some research on the web, because it was only in the past 2 weeks that I told my family back in australia that I had RLS. They didn't understand what it was and made some silly remarks on it, but thats only because they didn't know. But I did find out, both my sisters have it, but not as bad as I do. My mother has had it ever since I remember being a teenager and I'm 39 now. But they don't know and haven't gone to get themselves treated for it. After doing alot of research on the web, I found my comes from hereditary. Thinking back then my first was when I was in Primary School, here in the states they call it elementary school. I was extremely active in all sports on a daily basis.
When I would get the pain in my legs and arms, I just put it down to sports. Then the same in high school, I just put it down to sports.
Then when I was around 18/19 before I had kids, I went to my doctor in Australia about the pain in my legs and she put me on arthritis medication. All that did was make me vomit and and took it's toll on my stomach and didn't do anything for my legs. So I got off it.
Then after my second child was born in 1988, he fractured my tailbone and I have some discs bulging and pinching on a nerve. After that, I just put the pain down to my back and used to strap up my legs and feet so that I would cut the circulation off, until I couldn't take it any longer.
Then I worked alot of shift work throughout my life, which I also read wasn't the best thing for people who suffered from it, but at the time I didn't know any better.
I then started work at the theatre and kept complaining that the theatre must have mites or flees because my legs would itch so badly, but nothing would give me relief form the itch. I also found out with my research, that itching can be a part of it for some people. So that part now makes sense to me.
Then the insomnia came along which caused alot of problems with my first marriage, which ended up in divorce. He couldn't understand why I couldn't go to sleep at night with him.
Now in the states, four years ago I got so fed up I looked up on the web my symptoms and found out what I actually had and that not everyone has the same symptoms. But I had a name to what was going on.
So I took this information to my doctor and thank goodness he knew about RLS. As I also found out not all doctors now about it and now how to treat the patient with it.
He put me on Sinemet *CR* 25/100 1 tablet twice a day. It was heaven for a while. Until it started doing the reverse on me. It was actually making my symptoms worse, so then he put me on Klonopin .5mg 1 tablet three times a day. That worked quite well and I was getting some sleep. He then decided to take me off Klonopin because he said it can be addicting and put me on Neurontin 300mg 4 tablets a day. That wasn't working for me, it caused me side effects which I and my family just couldn't handle.
Then he left and was replaced by a fresh out of medical school doctor. I took my son to her to be seen about his back and I knew she wouldn't have know anything on how to treat my RLS.
So I got to see the head doctor in charge who usually doesn't take patiences anymore and agreed with me that my doctor wouldn't have known how to treat me.
He was thinking in the same lines as myself. What I haven't tried yet is a combination of medications together. So thats what he did.
He put me on Requip .25mg 1 tablet three times a day and also put me on Klonopin .5mg 4 or more my call, at night to be taken.
He also put me on Ambien 10mg 1 tablet at night when needed.
Well I was to be on this for a week and then get back to him. The requip was making me neasea and vomiting and a complete loss of appetite. I took myself off the requip 2 days before seeing him and I got my appetite back and no more vomiting.
So he changed me from requip to Sinemet *CR* 50/100 1 tablet twice a day and left the other two medications the same. The week with the requip I was getting some kind of sleep from the klonopin and ambien.
The second week it just stopped working. I was back to getting no sleep and loss of appetite.
I also learned on the web while doing my research, that alot of RLS suffers suffer from Anxiety and I'm 100% sure I am suffering from that.
He now has told me he has not idea why its stopped working and has told me my body in some people need higher doses/strengths of medications for them to work on them. And I'm that way. Even at the dentist, he finds it hard to numb my tooth and when he evenuatually does it wears off very quickly so he always has to rush the job.
Now this doctor told me he doesn't know what else to do with me and what other medications he can put me on. And has referred me to a Neurologists, which I'll be seeing on the 15th of Dec.
I also on my web research read that the ones who have it from herditary, are the hardest to treat. I just pray he's not one of those doctors who doesn't listen. The one who referred me said to me at first his first priority was to get me to get sleep, where I've found others dont even think of that part of it.
I also read stress brings on the sypmtoms or makes them worse and at the moment there is alot of stress in my home. We have a legal custody issue going on, my step son is living with us, but we are waiting for his mother to sign the agreement to make it official and this has been going on since april this year. Then I have my son who is on Accutane, I don't know if anyone has any knowledge of this medication, but the specialist and msyelf monitor him very closely in all areas.
Then I get told I have Catarats in my eyes, worse in my left than in my right, but I won't need surgury yet, but will later on.
I feel like a guinea pig going from one medication to another. I also think my back condition makes my RLS worse, but refuse to get a metal plate in my back. My sister is on her forth back surgury and if this one doesn't work she could end up in a wheel chair. My husband doesn't agree as well with the back surgury on me.
So which brings me to working. If I'm sitting doing I looking like a crazy woman stamping my feet because my feet start driving me crazy. If I stand for to long, or bend or the simplest thing, my back goes out on me.
So I'm finding it hard to be able to find a job that would put up with this.
Remembering going into a job with lack of sleep, that would go down well.
I sleep on the couch because my husband needs to get his sleep so he can go to work. It's been that way for I think 2 months now. I usually start going off to sleep around 5/6am unless my feet start up on me. I also get day time symptoms.
What I'm not sure of is my arms, I don't get them in my arms, up to my elbows as often as I do with my legs. With my legs they have progressed there way up to my knees. I get leg spasms and when its in my arms, the pain is unbelievable. So the symptoms in my legs are different to the symptoms in my arms, is that normal?
I also have GERD and take zantac and aciphex for that. I came to find out that the zantac that I take interacts with my RLS med's. I can't remember whether it stops the meds from working or what, but I do know they two shouldn't be together.
I feel so alone with this and my only relief I truly get is typing all this down to you all, knowing that you all have the same as me in some way or another. My children don't understand and get upset with me, my husbnd doesn't understand why I don't sleep with him in the bed, but in my eyes I'm trying to get him to get some sleep. Because Im constantly up and down and every time before, he would wake up when I did that.
There's no RLS groups in my area, I would love to attend.
The closest thing I have is this discussion board.
Does it get to any of you like this. Do you get fed up with it all. I even told my doctor when he said he didn't know what else to do for me, I replied back cut my legs off. He said he actually believed me.
Is there anyone else out there that goes through this, or is going through this, or has some advise.
Even after typing this it lifted me up a bit knowing someone will read this and maybe understand, because they have RLS as well.
I hope you all had a great thanksgiving
Thank you again for letting me rabble on.
I'm so glad this place is here.
Irena
This is long so please bare with me, I truly feel like I have no one that understands or am able to talk to about RLS.
I found out after doing some research on the web, because it was only in the past 2 weeks that I told my family back in australia that I had RLS. They didn't understand what it was and made some silly remarks on it, but thats only because they didn't know. But I did find out, both my sisters have it, but not as bad as I do. My mother has had it ever since I remember being a teenager and I'm 39 now. But they don't know and haven't gone to get themselves treated for it. After doing alot of research on the web, I found my comes from hereditary. Thinking back then my first was when I was in Primary School, here in the states they call it elementary school. I was extremely active in all sports on a daily basis.
When I would get the pain in my legs and arms, I just put it down to sports. Then the same in high school, I just put it down to sports.
Then when I was around 18/19 before I had kids, I went to my doctor in Australia about the pain in my legs and she put me on arthritis medication. All that did was make me vomit and and took it's toll on my stomach and didn't do anything for my legs. So I got off it.
Then after my second child was born in 1988, he fractured my tailbone and I have some discs bulging and pinching on a nerve. After that, I just put the pain down to my back and used to strap up my legs and feet so that I would cut the circulation off, until I couldn't take it any longer.
Then I worked alot of shift work throughout my life, which I also read wasn't the best thing for people who suffered from it, but at the time I didn't know any better.
I then started work at the theatre and kept complaining that the theatre must have mites or flees because my legs would itch so badly, but nothing would give me relief form the itch. I also found out with my research, that itching can be a part of it for some people. So that part now makes sense to me.
Then the insomnia came along which caused alot of problems with my first marriage, which ended up in divorce. He couldn't understand why I couldn't go to sleep at night with him.
Now in the states, four years ago I got so fed up I looked up on the web my symptoms and found out what I actually had and that not everyone has the same symptoms. But I had a name to what was going on.
So I took this information to my doctor and thank goodness he knew about RLS. As I also found out not all doctors now about it and now how to treat the patient with it.
He put me on Sinemet *CR* 25/100 1 tablet twice a day. It was heaven for a while. Until it started doing the reverse on me. It was actually making my symptoms worse, so then he put me on Klonopin .5mg 1 tablet three times a day. That worked quite well and I was getting some sleep. He then decided to take me off Klonopin because he said it can be addicting and put me on Neurontin 300mg 4 tablets a day. That wasn't working for me, it caused me side effects which I and my family just couldn't handle.
Then he left and was replaced by a fresh out of medical school doctor. I took my son to her to be seen about his back and I knew she wouldn't have know anything on how to treat my RLS.
So I got to see the head doctor in charge who usually doesn't take patiences anymore and agreed with me that my doctor wouldn't have known how to treat me.
He was thinking in the same lines as myself. What I haven't tried yet is a combination of medications together. So thats what he did.
He put me on Requip .25mg 1 tablet three times a day and also put me on Klonopin .5mg 4 or more my call, at night to be taken.
He also put me on Ambien 10mg 1 tablet at night when needed.
Well I was to be on this for a week and then get back to him. The requip was making me neasea and vomiting and a complete loss of appetite. I took myself off the requip 2 days before seeing him and I got my appetite back and no more vomiting.
So he changed me from requip to Sinemet *CR* 50/100 1 tablet twice a day and left the other two medications the same. The week with the requip I was getting some kind of sleep from the klonopin and ambien.
The second week it just stopped working. I was back to getting no sleep and loss of appetite.
I also learned on the web while doing my research, that alot of RLS suffers suffer from Anxiety and I'm 100% sure I am suffering from that.
He now has told me he has not idea why its stopped working and has told me my body in some people need higher doses/strengths of medications for them to work on them. And I'm that way. Even at the dentist, he finds it hard to numb my tooth and when he evenuatually does it wears off very quickly so he always has to rush the job.
Now this doctor told me he doesn't know what else to do with me and what other medications he can put me on. And has referred me to a Neurologists, which I'll be seeing on the 15th of Dec.
I also on my web research read that the ones who have it from herditary, are the hardest to treat. I just pray he's not one of those doctors who doesn't listen. The one who referred me said to me at first his first priority was to get me to get sleep, where I've found others dont even think of that part of it.
I also read stress brings on the sypmtoms or makes them worse and at the moment there is alot of stress in my home. We have a legal custody issue going on, my step son is living with us, but we are waiting for his mother to sign the agreement to make it official and this has been going on since april this year. Then I have my son who is on Accutane, I don't know if anyone has any knowledge of this medication, but the specialist and msyelf monitor him very closely in all areas.
Then I get told I have Catarats in my eyes, worse in my left than in my right, but I won't need surgury yet, but will later on.
I feel like a guinea pig going from one medication to another. I also think my back condition makes my RLS worse, but refuse to get a metal plate in my back. My sister is on her forth back surgury and if this one doesn't work she could end up in a wheel chair. My husband doesn't agree as well with the back surgury on me.
So which brings me to working. If I'm sitting doing I looking like a crazy woman stamping my feet because my feet start driving me crazy. If I stand for to long, or bend or the simplest thing, my back goes out on me.
So I'm finding it hard to be able to find a job that would put up with this.
Remembering going into a job with lack of sleep, that would go down well.
I sleep on the couch because my husband needs to get his sleep so he can go to work. It's been that way for I think 2 months now. I usually start going off to sleep around 5/6am unless my feet start up on me. I also get day time symptoms.
What I'm not sure of is my arms, I don't get them in my arms, up to my elbows as often as I do with my legs. With my legs they have progressed there way up to my knees. I get leg spasms and when its in my arms, the pain is unbelievable. So the symptoms in my legs are different to the symptoms in my arms, is that normal?
I also have GERD and take zantac and aciphex for that. I came to find out that the zantac that I take interacts with my RLS med's. I can't remember whether it stops the meds from working or what, but I do know they two shouldn't be together.
I feel so alone with this and my only relief I truly get is typing all this down to you all, knowing that you all have the same as me in some way or another. My children don't understand and get upset with me, my husbnd doesn't understand why I don't sleep with him in the bed, but in my eyes I'm trying to get him to get some sleep. Because Im constantly up and down and every time before, he would wake up when I did that.
There's no RLS groups in my area, I would love to attend.
The closest thing I have is this discussion board.
Does it get to any of you like this. Do you get fed up with it all. I even told my doctor when he said he didn't know what else to do for me, I replied back cut my legs off. He said he actually believed me.
Is there anyone else out there that goes through this, or is going through this, or has some advise.
Even after typing this it lifted me up a bit knowing someone will read this and maybe understand, because they have RLS as well.
I hope you all had a great thanksgiving
Thank you again for letting me rabble on.
I'm so glad this place is here.
Irena