I would just like to vent and also ask some questions..

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Newlydiagnosed331
Posts: 36
Joined: Mon Oct 15, 2012 8:38 pm

I would just like to vent and also ask some questions..

Post by Newlydiagnosed331 »

I was diagnosed with RLS almost a year ago. I have been taking Horizont 900 mgs. It works for the most part. I have some nights where my right leg just hurts and aches so badly and I can only lay on my left side or on my stomach. Without the meds both legs, and my arms get to me. I am only 31 years old. I try VERY hard to not think about this god awful diagnosis. I hate seeing chronic, no cure when I read about it. It freaks me out that I am so young and dealing with something like this. I feel guilty when I get worked up about this because I know there are people out there suffering through much worse. But, I am only human! I also feel like no one truly understands. Even my husband. Do some of you just feel pathetically sorry for yourselves every once in awhile like I do? I will literally have a nervous break down about it at least once a month or once every few months. I just want to be able to lie in bed and watch TV and relax before I fall asleep. NOPE! CAN'T DO THAT! I've tried other meds like Mirapex and the side effects were too much to withstand. I don't want to take pain killers. Right now I am taking melatonin to help ease me to sleep when I need it. It really does calm me down and makes me stop focusing on the discomfort I'm dealing with and gets me to sleep. Any one else try this?

Also, one day I'd like to have another baby. I was lucky with my 1st pregancy 3 years ago. I was not diagnosed and if anything I had a symptom here and there. But, if I want another child that means getting off these meds and being in HELL for 9 months. And, I know pregnancy can even worsen the symptoms. I AM TERRIFIED!! But, I can't let this prevent me from having another baby. Right?

Ok. Enough of feeling sorry for myself.

Any feedback is appreciated.

jul2873
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Joined: Thu Nov 15, 2012 7:32 pm

Re: I would just like to vent and also ask some questions..

Post by jul2873 »

Hi,

I am so sorry that you are going through this, and you're so young. But instead of being terrified by "chronic" look at it this way. There is a good deal of exciting research going on, and the researchers are finding new avenues to explore. For example, Johns Hopkins has a study going on now on the role of glutamate in RLS, since they've found glutamate levels higher in RLS patients. That's promising, and perhaps that research will lead to other knowledge as well. My guess it that a cure--or if not a cure, at least a good way of managing the disease--isn't that far away. I remember (I'm pretty old) when AIDS was a quick, terminal disease, and now they get closer every day to having it licked.

General Patton said that, "Courage is fear holding on a minute longer." We just have to hold on a little longer until the researchers figure this thing out. They will, and I'm sure you'll be around to celebrate. I am sure you won't have to live your whole life with the inadequate treatments and understanding that we live with now. Just hold on a few years longer.

Meanwhile, be sure you are seeing a doctor who really understands this disease. I don't know where you live, but there are people on this board from all over the country and I'm sure if you ask, or look at some of the postings, you can find a good doctor close to you--because you'll need the best doctor when you get pregnant again. I know iron levels are a big issue with pregnancy (both of my daughters had severe RLS during their pregnancies until they took enough iron) and I'm sure there are other issues I don't know about. Find a good doctor who does. Also look through the discussions here on the Special Populations board.

ViewsAskew
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Re: I would just like to vent and also ask some questions..

Post by ViewsAskew »

I get it - I have the same meltdowns periodically. I usually dust myself off, get up, and keep going. The alternative isn't appealing :-). But, it doesn't mean I don't go there now and again.

I've had this since I was a child - but it was minor until my late twenties, early thirties. It just got worse over time until here I am. I've been through at least 15-20 drugs in multiple combinations and alone, I've tried just about every non-medical solution I can, and it's still here.

There are many GREAT stories on here - sometimes they seem dark and sad, but in every one of them, one of us prevailed in some way. In a way, it's extremely hopeful.

Glad you're here, vent whenever you want, and here's hoping that all of us here see a day in the not so distant future that this board isn't necessary any longer.
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.

JustKeepWalking82
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Re: I would just like to vent and also ask some questions..

Post by JustKeepWalking82 »

Hi, Newly! Jul is right about staying positive and keep holding on. I am only 21 and have had bouts of RLS since I was about 15-16. Mine is all over my body and I do have to take pain killers for it because I usually have bad side effects from the other drugs for it. To answer your question, I do have breakdowns like that. In fact, I had one right before I left to go to the airport to get a sleep study done. I am sure all of us on this board have had one from dealing with WED. Venting is absolutely fine on this board. Sometimes, you just have to let out all of the negatives that are built up. I have done it on this site and I have only been a member for about two weeks! :D

A good doctor who knows about RLS and knows how negatively it can affect a person can make all the difference. Sure, you may still have the need to vent but that is what we are here for! :) Jul is right about looking around the board for information regarding about becoming pregnant again. This board has a wealth of invaluable information and even more priceless members! :D
Marisa
Always know that there are good people in the world to pick you up when you fall down.

badnights
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Re: I would just like to vent and also ask some questions..

Post by badnights »

My life turned upside down from this disease in 2007, after a knee operation. (In hindsight, it was getting worse slowly before that.) It was something I had always had, but after the operation, it became a nightmare.I felt like you describe for the better part of three years! I just couldn't accept that I was effectively disabled, and in this insidious way that no one outside of myself could see!

Yes, I still get like that. Once every day or two I have a short flash of intense regret or anger or even shocked disbelief (still!), and now and then I get really depressed about it. Just as my life was beginning again after raising my kids and seeing them off into the world, everything came crashing down. There are spin-off repercussions that keep on appearing. No, it's not an easy disease to live with. There just aren't the adjectives needed to describe it.

But what I have found, is that there ARE nights when I can just sit down and relax. Not as many as I'd like, but they do happen. It took me three years to find a combination of meds that worked, and I had to go to opioids eventually, but they have given me a lot of my life back, so no regrets.

And there has been great progress in understanding the causes of the disease. Long way to go! but great progress. I like to think of some breakthrough happening, some sudden understanding like the recognition of insulin, followed by rapid development of a treatment, like taking insulin from cow pancreases, which saved the lives of children with Type I diabetes who would never have made it to adulthood without it. There were parents who had despaired of seeing their children grow up, yet saw them grow up and have happy lives. It happened in the span of a few years. So the same thing can happen for WED/RLS. It is not justifiable to think that it won't, because there is a reasonable chance that it will happen in our lifetimes.

Still, knowing that, I still get angry or depressed at times. I have learned more about acceptance with this disease than anything else in my life, that's for certain.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Newlydiagnosed331
Posts: 36
Joined: Mon Oct 15, 2012 8:38 pm

Re: I would just like to vent and also ask some questions..

Post by Newlydiagnosed331 »

Thank you all so much for your posts!! It is nice to feel like you're not alone. Although I wish none of us had to deal with this hellish disease!

I think what it comes down to is I really need a doctor who understands me more, will support me more, and develop a better treatment plan with me. This weekend I was doing some searching on the internet. I found a new movement disorder clinic opened up near me. I got really excited! I called them today and was able to get an appt next month. This doctor JUST specializes in my disease. Makes me feel a lot better. My doctor now seems like he's washed his hands clean of me. He pretty much acts like he can't help me anymore. At one time or another he did tell me I should see a movement specialist. I was just having a difficult time finding one. Most wanted me to get a sleep study. Which is fine. But, they wouldn't see me unless my results were up to par so to speak. I didn't want to waste my time. I also want a good doctor in my corner when I decide to have another baby. The doctor I have now seems like he could care less. What I also liked is that they have psychiatrists/therapists there. Depression goes hand in hand with these diseases! I think that's brilliant. It's nice to know someone is there to talk to if I need it. I hope this doctor is good and is the one I'm looking for!!

I do have days/nights that I can just relax. But, some weeks are worse than others. Which is typical. Has anyone tried melatonin? I'm going to try my hardest to stay off pain pills. I know they work. But, I never react well to them. And, I'm scared about the habit forming effects of them.

All of your stories made me tear up a bit! Thanks for sharing!

Polar Bear
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Re: I would just like to vent and also ask some questions..

Post by Polar Bear »

Melatonin, - my dr had me try a 13 week course of melatonin and I'm sad to say that it had no positive effect of any sort but I did the course so that I could show dr once and for all that here is a medication that doesn't work for me.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: I would just like to vent and also ask some questions..

Post by badnights »

wow, that clinic sounds like a dream! I don't want to dash your hopes, but keep them in check with a bit of realism: some so-called RLS specialists don't know diddly-squat about RLS. I hope this one does! And even if s/he doesn't, chances are he's willing to learn, which is all you need. So, it sounds great! I can't wait to hear how your appointment goes.

To the best of my knowledge, it you're going to get pregnant, you will have to either be medication-free or be taking methadone or suboxone.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Newlydiagnosed331
Posts: 36
Joined: Mon Oct 15, 2012 8:38 pm

Re: I would just like to vent and also ask some questions..

Post by Newlydiagnosed331 »

I am of course skeptical. But, I have heard very good things about this doctor. Obviously I'm not looking for a miracle. I'm just looking for a medical professional that has more experience in the disease and is a WAY better support than the neurologist I have now. I feel as though when you have a chronic illness you should really have a good doctor on your side. Not one that says "I don't know what to do for you anymore." Yep...my neurologist said that to me once. Comforting, right?! Unreal how some doctors are.

I don't think I could ever take methadone or any other type of meds while pregnant. I know I will be walking into absolute hell medication free for that long. But, I just don't feel right about taking those things. I'd be so worried about harming the baby. My husband said to me last night... "If methadone is the only way to give you relief, maybe you shouldn't have another baby." It broke my heart. He wants another more than anything too. I CANNOT LET THIS STUPID DIAGNOSIS RUIN OUR DREAM OF HAVING ANOTHER BABY!! I told him that too. He said he knows but does not want me to feel so terrible for that whole time. I guess we'll just have to cross that bridge when we decide to come to it.

I've never had a sleep study because I couldn't deal with another medical bill. And, quite frankly, the idea of a sleep study does not sound fun. But, if this doctor wants me to do it, I will. Do you have to get off your meds for it to see true readings? If that's the case, I'm not doing it. It wouldn't be a sleep study. It would be an awake study because I won't sleep. :lol:

ViewsAskew
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Re: I would just like to vent and also ask some questions..

Post by ViewsAskew »

There are many studies and thousands of woman who deliver safely when using methadone. I'm not saying to use it - only you can decide. But, if you need to, it's there for you.

It depends on what the doctor wants to see. WED/RLS is NOT diagnosed by a sleep study, but PLMs and apnea are. We have many people here who have all three or a some other mix. PLMs are not necessarily bad - they don't interrupt everyone's sleep. If they do, it's nice to know so that you can be sure they are covered.

If the doctor is looking for apnea and limb movements, being medicated is fine, probably good. If the doctor wants to see how well the meds are working, again, you'd take them. There isn't much use in seeing what your sleep is like without them. If you only had WED, you'd stay awake until you finally could get an hour or two of sleep, and then you'd sleep - they wouldn't "see" anything.
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.

Newlydiagnosed331
Posts: 36
Joined: Mon Oct 15, 2012 8:38 pm

Re: I would just like to vent and also ask some questions..

Post by Newlydiagnosed331 »

When I think about it, it does not seem that I need a sleep study. I'm no doctor though. I don't wake in the night that I'm aware of. It's just getting to sleep that's my problem. Hopefully they won't want me to get one. It doesn't sound fun. And, I don't need another large scale medical bill. I've gotten SO many tests in the past year for this diagnosis. MRIs to rule out other things, blood work, EMGs.... The list goes on.

I have read the methadone is safe as well. However, I just don't know if I could ever feel right about taking it while pregnant. I may feel TOTALLY different when feeling all those horrible symptoms though. I'm just going to try not to think about pregnancy right now. We don't plan to have another for a few more years anyway. It's just something I think about from time to time.

Thanks again for all of your feedback!

rthom
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Re: I would just like to vent and also ask some questions..

Post by rthom »

Just a question about methadone and pregnancy. Does safe during pregnancy mean it doesn't affect the growth of the fetus or that the fetus also does not go through withdrawal symptoms when the baby is born and does not have an addictive personality later in life? Most drugs are affecting the babies after birth as well, like fetal alcohol syndrome etc.-- thus my question---anybody know? I don't understand if it is so hard for people to get off methadone why the baby wouldn't have trouble after birth as well. :?:

ViewsAskew
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Re: I would just like to vent and also ask some questions..

Post by ViewsAskew »

rthom wrote:Just a question about methadone and pregnancy. Does safe during pregnancy mean it doesn't affect the growth of the fetus or that the fetus also does not go through withdrawal symptoms when the baby is born and does not have an addictive personality later in life? Most drugs are affecting the babies after birth as well, like fetal alcohol syndrome etc.-- thus my question---anybody know? I don't understand if it is so hard for people to get off methadone why the baby wouldn't have trouble after birth as well. :?:


The drug has many years of testing. There are so very few drugs approved during pregnancy, for any issue - and this is. There is NO evidence of any ongoing issue given that the mother's dose stays consistent and she doesn't start or stop suddenly - stopping suddenly can cause miscarriage. In fact, if a woman is using opioids and finds she is pregnant, she should talk to her doctor before she stops her medication (or drug use, if she's using). And, frequent dose increases during pregnancy can cause delays in motor skills. But, that's really about it.

At birth, some babies, when mom is on a low dose, do not need to even withdraw from it. When on a higher dose, they usually do go through withdrawal. But, other than that, they are fine. None are born addicts. Given that the vast majority of these babies are born to mothers who are drug users - they could be HIV positive, have hep-b, and so on - and the dads may well be, too, the babies do have a higher risk in general, I'd think, of being an addictive personality. Science knows that this is largely genetic - so, the likelihood of two addicts having a child who carries these genes is probably high. I have no idea if anyone has ever studied it. No different than an alcoholic and codependent parent (and there are millions of those out there) - there is a reason alcoholism, just like drug addiction, runs in families, and it's not just because they learn it from each other.

So, safe means that at the worst, the baby needs to go through a short period of withdrawal, given the mom managed the drug use appropriately with her doctor.

Here is a link that helps demystify it: http://www.dailykos.com/story/2012/05/0 ... -The-Facts
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.

badnights
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Re: I would just like to vent and also ask some questions..

Post by badnights »

Thanks Ann! Nice explanation. I wondered about some of that myself.

Newly, if your hubby says you don't snore much (or at all :) ) then you might be able to convince the doc that you don't need a sleep study. Mainly they would be looking for obstructive sleep apnea, which is pretty much invariably accompanied by snoring. There are a host of less common sleep disorders that can be diagnosed, or whose diagnosis can be supported, by a sleep study, but if you have no indication that you might have one of them, it might not be regarded as necessary.

Re pregnancy, there are really two things to consider, and only one has been mentioned. Neither seems to have definitive answers, so it's perhaps mean of me to bring the other one up. One, if you do take methadone, is the baby's possible withdrawal (known to happen sometimes) and the unknown possible later effects (that may not exist). The other, if you don't take methadone, is what is going to happen to the growing fetus under conditions of maternal sleep deprivation and anguish (maybe nothing).

I suspect it really doesn't matter; you will not notice any lasting bad effects from either scenario and your baby will be wonderful. If you decide to approach it without meds, you should probably arrange with your doctor that you can go on meds if you need to (that might be complicated and require a different doctor to be standing by). Then you will know you have a safety net, which might keep you from going insane in the darkest times, even if you never use it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Newlydiagnosed331
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Joined: Mon Oct 15, 2012 8:38 pm

Re: I would just like to vent and also ask some questions..

Post by Newlydiagnosed331 »

Thank you all again for the responses. And, thank you for the information on the methadone. Quite frankly, reading about it scares me more. Don't know if I could do it... Again, I will cross that bridge when I come to it. I honestly don't think my husband would be on board with the methadone either. Can't say I blame him. I can't believe there's nothing more to take during pregnancy!! I sit behind a desk all day at work. It should be a fun pregnancy. Ugh!! But, like I said, we don't plan on getting pregnant for another few years due to other reasons. Maybe something amazing will happen in those few years! One can hope, right? :) Just trying to stay positive when I mostly am a negative nelly about all this.

I don't snore. So, hopefully the sleep study is out! Looking forward to my appointment. I will definitely let you know how it all goes. Hopefully it's not a let down! The appointment is 9/24. Surprised I got in so fast to see a specialist. Usually you have to wait several months!

How's everyone doing???

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