Sick of this disease

[Jenne1950]

I'm tired of sleeping in a recliner when I have a perfectly comfortable king size bed with my CPAP which I can't use in the recliner. I'm tired of trying to catch a 1 hr. nap in the afternoon, and my legs irritating both my husband and me. I'm tired of being awakened by the noise of my legs bouncing off the bed. When I'm afraid to sleep in my own bed, it's gone too far. I tried the other bed, but the mattress makes my back hurt so bad I can't get up. The Requip works at night, but that doesn't mean I can fall asleep easily with my fears working overtime.

I guess all I really need to say is--I'm tired and no one except those of you here understand why. Being "in bed" wherever that is doesn't mean I get enough sleep. And without the CPAP for all or part of a night leaves me drowsy all day the next day.

I know--we all cope, and I do 90% of the time. It's just my day to be fed up I guess!

Jenny

[ksxroads]

I am here rowing for you Jenny, you get it out and off your chest, that is what we are all here for! Wish we had a wizard who could make everything better, instead we have a wonderful group of people who do understand where you are coming from, we have all been there and sadly we will be there again. At least I know I am not alone in this journey!

So I will row for you and all the others who are suffering more than I am today. Let me stir up that hope ... there will come a day when I will need others to row for me.


Love Hazel

[Jenne1950]

I'll be happy to row on any day but today! I afraid we'd be going in circles, get sick, and all fall out!

[ViewsAskew]

I am so sorry that the recliner is your evening home away from home. It takes such a toll on usand our relationships to be away from those we love. When we need intimacy the most, we're the most separate.

Wish my magic wand would work. Oh, right, you have to have one first. And, then, it has to work. I wish I could do more.

[jan3213]

Hey Jenny

Sorry, I just saw your post. I can't remember the last time my husband and I slept together. So, I understand.

You know that I sleep in a recliner in our family room with the TV on all night. I actually alternate between the recliner, the couch and the loveseat, all night long.

I'm sick of it, too. It's just sad, just plain sad.

Jan

[Kaye]

:Hi---I read your posting and it sounds like me. I,too, am tired of bouncing my legs off the side of the bed. I was getting a root canal done once and even had to bounce my leg on the side of the dentist's chair----he knew I had RLS. I wish more people would understand how frustrating this is and how powerless we are to control it. I have used Requip, Klonzapen, Mirapex and all work for a while, but then it is like I get immuned to them. Just want to let you know that you are not alone------I try to think of others who are a thousand times worse off than I am but sometimes as I try to drive and all I want to do is bounce my leg, I can't help but wonder, "why me?" But, we will make it and someday soon there will be a cure---I truly believe that. Hang in there. Kaye

[becat]

Hi Kaye,
You know, after living with RLS all my life, I think I know why me!
God knew I'd finally get torked off enough to try to set about change. If not for me, for those that follow. It doesn't always make it easier when sleep is no where near or the pain in my legs makes me cry....
But I happened into a great bunch of kind and caring people when I found this board again 2 yrs ago. What a life saver. And the best part is that group then was totaly proactive about making sure change happened. It's helped to think I might be making a difference for my future grandchildren.
It's kinda a rule among us "oldtimers" not to compare ourselves to others. It never works. I think any RLS is horrible, mild, rarely, or 24/7/365. So don't worry about venting about yours, you have it and we do too.
We're family around here cause we have a great thing going. The more the better.
We will together make sure a cure is found and until then we will support and educate the rest of the "still" world.
hugs and the moon.
Lynne

[Penguinrocks]

Why me?

So I could meet and possibly help wonderful people like I've found here.
I may not be a medical professional, but I AM a penguin with a big heart and a lot of love and compassion for everyone here!

[ViewsAskew]

And, not much can top THAT! Big hearts, love and compassion are unsurpassed.

[brandy]

I hate to add my fussing to the end of such kind and encouraging words, but today is my day to want to pull my hair out. I have gone off all meds prior to my meeting with the neurologist so that I will be able to be evaluated "clean." The Requip was causing problems anyway, but I also quit my antidepressant, because I read that it can make things worse and have only gotten any sleep at all thanks to some Lunesta that my doctor prescribed for me. But that is definitely "fake" sleep and I have to take fairly high doses to be enough to keep my legs from keeping me awake. I have decided not to take even that for the next 2 nights because my appointment is Monday and I really want to be able to provide all of the information I can. The problem is, I am not at the point where I am having symptoms all day long that, of course, get worse at night. All day long I have have to be moving my legs and feel like someone is sticking a cow prod to my feet. I think I might actually go insane! All I want to do is cry. I said something to the effect of "I'd die for some decent sleep" to my husband last night and he responded, "You probably feel like you wouldn't mind dying because then you'd actually get some sleep." Boy, does he get it pretty well for someone without RLS! Don't worry, I'm not going to do myself in. But, I just might find myself with my best friends being the guys in the white coats and the highlight of my day being macrame in the common room of the crazy house! I am one of the lucky ones, I know. I have a supportive husband and I am seeing a specialist on Monday. But today, I'm finding it hard to keep my blessings in sight!

[ViewsAskew]

It is hard, isn't it, to keep any blessing in sight when your RLS is that bad. I hope that this is the worst of it. From my experience, the first week off of the drugs was the worst. After that, it got better. By day five or six, I wanted to be dead! By day 8, I finally had some let-up of the symptoms and was sleeping some. I hope yours is following the same pattern.

As you hated to be the one to to add your fussing, I hate to be the one to caution you that all may not be well after this visit.

Oh, I wish it weren't so, but the truth is that many of us have visited specialists only to find that they didn't really specialize in RLS. They only know the basics, if that, and they can't help us. Sure, they know how to give Sinemet to someone, but that is it.

I'm glad you have educated yourself so thoroughly. I am really glad you have gotten yourself off of the drugs - it is helpful to be at a baseline. But, this doc may not know what to do with you.

Oh, that made me think of something. When you have augmentation from the DAs, it can take up to a couple of weeks for the augmentation to recede. And, the first week can cause the worst symptoms you've ever had - believe me, I know . I was emailing Dr Mark Buchfurer about this last month - he says it is quite common. He also said that some people experience this period longer than others - mine lasted about 8 days. He didn't say how long, just that some people have it for longer and that the opioids are essential to get through it with any sanity intact (my words)! It seems that the only way through this is with opioids. Another DA will not help.

It may be that another DA will work later, but for now, it will probably make things worse, or keep it at the level it is at.

Keep all of this in mind when you meet your new doctor. He or she will likely be overwhelmed by all that you know. . .and may feel intimidated. It can seem logical to act as if you don't know anything, but be careful that they really understand your situation, or they may railroad you into treatment that is not the best for you at this time.

OK, I'm done. I apologize in advance for being such a party-pooper and hope that I didn't sound too negative. If I hadn't had it happen to me several times, and watched many here go through it, I wouldn't bring it up.

[brandy]

Thanks, Anne! My symptoms are continuing to worsen after about 2 weeks off the drugs. Thanks for the info that I might need a break from the DAs altogether. Also, thank you for the word from Dr. B. that some people continue to have their symptoms worsen following augmentation. I was beginning to wonder if folks knew something I didn't because I have not yet reached the place where things start to improve following the drug vacation (although, of course, vacation is not really an accurate term!). Is there any way you can forward me parts of the e-mail from Dr. B. that are pertinent to my situation that I might could take with me to my appointment? I have already printed the Mayo Clinic Algorithm, as suggested and have gotten together all of my medical records as well as meds I was on. Unfortunately, no one is available to go with me to the appointment, so I have to be psyched up to take care of myself. I am generally really bad at taking care of myself, but am seeing how my RLS is affecting others in my life, so I hope that will give me the strength to do what I need to do. Thanks so much for your support and advice. I'm trying not to set all my hopes on this visit, but I'm so tired, that it is hard not to hope that this will be the answer. Love to all!

[ViewsAskew]

It is almost impossible not to set your hopes on these visits - I went though six of them. The first ones I was shamelessly hopeful - almost giddy. Even after several duds, I still would think, "Oh, this one will get it. I know it." I was so exhausted by the time I found a doc to work with me, I don't think I was hopeful anymore - I was determined. I didn't think I had the power to go through another one. I just laid everything on the line and let it go. Fortunately, it worked.

The following excerpt may not connect all of the dots because the conversation was through several emails and we also discussed other topics. I hope this part helps.

"Withdrawal from a dopamine drug is indeed extremely difficult as you have mentioned. The time course can be variable (I have had cases were it lasted even longer) but your info is pretty close to what most experience.

"I use the opioids (usually methadone) unless there is a contraindication for this class of drugs. With adequate doses of narcotics, usually most all the withdrawal symptoms can be relieved. {information removed} only dopamine drugs are associated with this problem [augmentation] so there is no good reason to withhold narcotics or any other helpful drugs during that difficult period. Physical dependence/tolerance to an opioid cannot occur at 2 weeks (except in cases of a previous history of opioid addiction). In fact, I rarely see dependence on opioids when taken properly (even at fairly significant doses) and monitored by a knowledgeable doctor."

You had mentioned you are reading Yoakum's book. . . Dr B and some others have a new book that should be out soon. Here is the link to it at Amazon. I know that he covers treatment quite thoroughly. I imagine he will have information like the above post in the book. http://www.amazon.com/gp/product/193260 ... e&n=283155

I am shamelessly hawking this as I had a very, very tiny part in helping write part of the book. I am so excited that it will be out soon. I haven't read it all, but I expect it to be an excellent resource for all of us.

[brandy]

Ann, I really appreciate your help on this. Just 16 hours to go! I'm trying to keep caution in mind, but I'm also very nearly nuts about now, so I can't seem to help getting my hopes up. Today, for the first time since I've been off the Requip (about 2 weeks), I had about 3 hours without symptoms. They're back now, of course, but it helped to have a little bit of relief. Very little sleep last night and I expect another like it tonight, but my appointment is in the morning. If this doctor can't help, I don't know what I'll do, but I've gotten all my information together (thanks to the help of folks on this site), and I'm just close enough to the edge that I think I will speak very plainly with the doctor (after giving him a chance, of course). I am having a particularly hard time this weekend. I feel like my nerves are absolutely shot, my emotions are all over the map, and I feel like I'm losing my grip. I can't seem to get a handle on how difficult things are right now and am likely to break into tears at any moment. Again, as we've noted before, I am having a particularly hard time with the loneliness of trying to battle this disorder and do my part to help in my healing. No one in my life suffers from RLS, so no one can understand what the last two weeks have been like. After sleeping about an hour last night, I got up this morning to find my husband packing to go for a hike. He invited me to join him and I irrationally felt so angry and hurt because I had been up by myself all night, I was going to be alone again all day today, and he didn't seem to understand that I am too exhausted to spend all day hiking after only an hour's sleep and relentless symptoms. Anyway, sorry about the rambling. I really just wanted to say, "Thank you."

[ViewsAskew]

I wish I didn't understand - I wish I was as ignorant as the people who think RLS is disease-mongering and the holocaust never happened.

It is almost impossible to be in any kind of control when you've been going through what you have. My hat's off to you - you managed to get off the drugs and have hung in there for two weeks. I never managed more than five or six and I was a blubbering basket case. I stopped the Mirapex 3 times - lasted 6 days one time, two days another, five another. Each time, it just got worse and worse, so I started it again. When I got the methadone and it worked, I thought I was in heaven. Stopping that time was relatively easy.

You sound about where I was when I saw my last doc. I took in my stuff, explained how I needed his partnership and help, told him that needed him to believe me. He looked a little skeptical. I told him how many people I'd already seen and started handing him article after article about the reseach and the copy of a letter from Dr B with treatment advice.

In a way, though, I was luckier than most. He was my PCP years ago - he didn't remember me, but my sister still went to him, so I had some relationship. It wasn't like I came off the street asking for methadone.

My fingers will be crossed for you tomorrow. I hope this is the right one. If it's not, it's one more off the list and you can be on your way to the next one. In the meantime, I think it is a good sign that the RLS waned for a few hours today. I think you may be on the upside! Your RLS won't be gone, but it should subside back to its prior level before the augmentation.

Oh, and while you are there, do your best to remember how much you deserve this. It's so easy to get intimidated or allow them to give you something other than what you want. You second guess yourself and say, well, I'm not the doctor and maybe they are right. You do know what you need - much more than any doctor out there. You've done your homework, so stick to your guns. If this person can't or won't help you, don't settle for taking something you don't feel good about.

OK, I'm done now .