We have belonged to the RLS Foundation for several years now. My husband is the one with RLS. It is unbelievably bad. He never gets at decent nights sleep. I bet he never gets normal sleep cycles. I don't know how he survives.
His Doc is a specialist in breathing (pulminary) and Sleep disorders.
My husband is not getting the help he needs. Besides RLS, he has chornic asthma and is very overweight. He currently takes a cocktail of a bunch of stuff including anti parkinsons type medicines, etc. We don't sleep in the same room, but when I do see him sleep it is disturbing. He has constant PLM (the limb movement) and seems to breath poorly. I think he needs intensive treatment and a sleep study,etc.
He needs to keep going back to this guy and letting him know how miserable he is. I worry about his mental state and how he can possibly be doing at work.
I think he is losing hope. He says he reads all the latest stuff and that there just isn't any help. Is this true? Am I just not able to accept it? If it were me, I would be in that office demanding they refer him or keep trying alternative methods. Its been a year since he's been in to this doctor.
Help. I welcome any advice. I am scared this is going to kill him.
Help! Need Advice About My Husband
Help need advise about my husband
Welcome Kathyh I am so sorry to hear about your husband and his rls. Has your husband had a sleep study? It also sounds like he may have sleep apnea. I am not a dr and cannot give any medical advice but am concerned as I know you are.
You said that your husband reads alot of things. Is this on the board? If so have him read New to RLS "Managing RLS" and also read and the Mayo Clinic Algorthim and make a copy so he can give it to his dr.
I hope you do not mind me saying this, but I would go to the drs and demand that they get the referrals for him that he needs.
Please keep us posted on how he is doing and if he gets a referral.
We really do care.
You said that your husband reads alot of things. Is this on the board? If so have him read New to RLS "Managing RLS" and also read and the Mayo Clinic Algorthim and make a copy so he can give it to his dr.
I hope you do not mind me saying this, but I would go to the drs and demand that they get the referrals for him that he needs.
Please keep us posted on how he is doing and if he gets a referral.
We really do care.
Charlene
Taking one day at a time
Taking one day at a time
Hey Kathy,
I have some free advice which hopefully it's worth more then you paid for it... It does sound like he needs a sleep study desperately. A year is a long time to go between doctor visits. In my signature (see below) is a link to the RLS "roadmap" showing what many US experts feel is a good treatment plan regarding medicines.
There's no doubt that a lack of sleep can make one feel hopeless but there's always hope but he has to help himself. Hopefully you can lovingly assist him in why it's important to see a doctor.
Does he know how much he's kicking around? And if he has apnea then it's doubley hard to get good sleep but a doctor might prescribe a CPAP machine to help him get the oxygen the brain needs.
If his doctor isn't able to help him anymore, then a referral to another one might be in order who knows about RLS.
Lastly, if the "Guy gene" kicks in and he doesn't want to go to the doctor or sleep study, then I would ask for his permission to video tape him while he sleeps. I think if he saw what you saw, maybe that would get his attention. Hang in there!
I have some free advice which hopefully it's worth more then you paid for it... It does sound like he needs a sleep study desperately. A year is a long time to go between doctor visits. In my signature (see below) is a link to the RLS "roadmap" showing what many US experts feel is a good treatment plan regarding medicines.
There's no doubt that a lack of sleep can make one feel hopeless but there's always hope but he has to help himself. Hopefully you can lovingly assist him in why it's important to see a doctor.
Does he know how much he's kicking around? And if he has apnea then it's doubley hard to get good sleep but a doctor might prescribe a CPAP machine to help him get the oxygen the brain needs.
If his doctor isn't able to help him anymore, then a referral to another one might be in order who knows about RLS.
Lastly, if the "Guy gene" kicks in and he doesn't want to go to the doctor or sleep study, then I would ask for his permission to video tape him while he sleeps. I think if he saw what you saw, maybe that would get his attention. Hang in there!
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Kathy, there is a small group of people whom the current medication can't help. But, it's a small group. It sounds to me like he needs a new start - with someone who really "gets" RLS and other sleep disorders. Sometimes that is hard to find, however.
You might be able to help if you wanted to do some research, looking for docs in your area that might be specialists. You could start with the list of physicians in your area that have listed their names on the RLS FOundation's list of docs (on their main website). You could call them and ask to talk to the nurse - explain your situation and explain he's already taking meds but they aren't really helping. Ask the nurses if the doc you are calling about really would be able to handle a difficult case.
Then present him with a list of the few that seem to be qualified. Tell him you love him and want to spend the rest of your life with him. . . and want it to be a long life. Undiagnosed and untreated sleep apnea (which goes hand in hand with obesity) can shorten a person's life. Tell him you will help him if he will help himself. Maybe that will do it.
Of course, this is just one of many things you can do. Just an option. Choose what works best for you and with your relationship with him. I hope you find the answers both you and he need.
You might be able to help if you wanted to do some research, looking for docs in your area that might be specialists. You could start with the list of physicians in your area that have listed their names on the RLS FOundation's list of docs (on their main website). You could call them and ask to talk to the nurse - explain your situation and explain he's already taking meds but they aren't really helping. Ask the nurses if the doc you are calling about really would be able to handle a difficult case.
Then present him with a list of the few that seem to be qualified. Tell him you love him and want to spend the rest of your life with him. . . and want it to be a long life. Undiagnosed and untreated sleep apnea (which goes hand in hand with obesity) can shorten a person's life. Tell him you will help him if he will help himself. Maybe that will do it.
Of course, this is just one of many things you can do. Just an option. Choose what works best for you and with your relationship with him. I hope you find the answers both you and he need.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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sugbrendas
- Posts: 234
- Joined: Thu Aug 05, 2004 7:28 pm
- Location: Balto.
- Contact:
I have just one piece of advice.
a sleep study ASAP.
On top of RLS my sleep study shows severe (deadly) drop in oxygen during REM.
I bought a oxygen concentrator off of eBay cause my insurance doesn't cover it.It only cost me $400 , brand new in the box.
I could have died.
a sleep study ASAP.
On top of RLS my sleep study shows severe (deadly) drop in oxygen during REM.
I bought a oxygen concentrator off of eBay cause my insurance doesn't cover it.It only cost me $400 , brand new in the box.
I could have died.
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
I was first diagnosed with Sleep Apnea in Sept 04, after the second sleep test with the Cpap machine, my RLS/PLMD showed up. NOt being a doctor, it sounds like hubby needs a sleep test, you may notice a very distinct snore patern ( a few little snores, 1 big one and then silence), also, he may have teeth trouble, as sleep apneacs grit their teeth at night fighting to breath, also, he may have some very weird dreams, like your awake, but your body is asleep, etc, these are just the experiences I have had before my diagnosis....and I was also dealing with the RLS stuff. In my case the sleep apnea was dominate at first and once I started on the CPAP and I started taking Mirapex it made a world of difference. ( I started on the CPAP 9/27/04 and I considered it a second bday. Now if I couldfind a solution for my RLS.....things would be perfect.
Sue S
"when the going gets weird, the weird turn pro"-Hunter S. Thompson
"when the going gets weird, the weird turn pro"-Hunter S. Thompson
Hi
I have rls, plmd, sleep apenia. I use a cpap every night but my hubby says my legs constantly move all night long, some nights worse than others. I would say your hubby needs a sleep study and he needs to do it asap.
I know exactly how he feels. I had a sleep study and they had to redo it a second night because my legs moved so much the wires kept coming off my legs. They told me each time my legs moved I awoke, this is why I never felt rested.
Wish I could say it gets better, there are good nights few and far between, but if he needs a cpap he needs to get it soon
Good luck, let me know what you find out please.
I have rls, plmd, sleep apenia. I use a cpap every night but my hubby says my legs constantly move all night long, some nights worse than others. I would say your hubby needs a sleep study and he needs to do it asap.
I know exactly how he feels. I had a sleep study and they had to redo it a second night because my legs moved so much the wires kept coming off my legs. They told me each time my legs moved I awoke, this is why I never felt rested.
Wish I could say it gets better, there are good nights few and far between, but if he needs a cpap he needs to get it soon
Good luck, let me know what you find out please.