My Story <3

[mrsphillips610]

Hi everyone!
I'm Jessica and I'm 26 years old. I have never been diagnosed with RLS, but I know this is what I have because of the research that I've done.

It all started when I was around 15 years old. I had went through some very tough times with my family due to my parents almost getting a divorced. I became extremely depressed and even attempted to take my life several times. I honestly do not know how I am still alive today after all of the things I put my body through. I became very withdrawn and basically hated my dad for wanting to leave when he was the one that caused all of the problems in the first place. I am a firm believer that you should leave instead of dragging people through hell only to turn around and leave after the other person has put up with your crap. I could not take it anymore. So I attempted suicide. That failed somehow and my doctor put me on anxiety and depression medications. I was taking Cymbalta (sp?) and Celexa for a year and a half. I started noticing that I was having some issues with my legs not wanting to stay still when I was laying down. It didn't hurt, but it did make it almost impossible for me to stop moving. I always felt like I had ran a marathon by the end of the day. I figured it was the medications, so I didn't ever say anything about it.
After I took myself off the medication (weaned myself off, not cold turkey) I did not notice any change in my legs. They still felt like they had to move at night when I laid down.

After dealing with this for years I decided to do research on it and find out what was going on. I discovered RLS through putting my symptoms into a website and reading descriptions on what my issue could be. RLS fit perfectly and still does. I had talked to my mother about RLS and she told me that she had it too! She said that doctors do not really know how to diagnose this and often times assume that it is a sleeping disorder and try to prescribe medications that do not help.
This idea terrified me because I am not one to put useless things into my body. Except for ice cream...ice cream is delicious and should be enjoyed by everyone.
I decided the best thing for me to do was not tell a doctor about what was going on. I did not want to be attached to a machine to monitor my sleeping habits.

Now I sit here at 3am...like I do probably 5 nights out of the week...waiting to get tired enough to finally go to sleep. It's not that I do not attempt to go to sleep. I lay in bed with my husband and make my best attempt possible at getting into a comfortable position so I can drift off. I never seem to get comfortable though.
I researched (thats how I found this site) home "remedies" for RLS and have tried basically everything I have read to fight this horrible condition. I feel that I am missing out on so much due to this. I don't get enough sleep which leads me to sleep too late or have to take naps during the day. I want to be able to stay awake all day and actually be productive. I have not told my husband about this. I feel that I have too many things wrong with me already and I do not want to add to the list.

Depression
Anxiety
Panic Attacks- several times per day...everyday.
Infertility
PCOS
Bi-Polar disorder

Those are all of the things that he knows about. He does not know about RLS and he does not know that I suffer from PTSD. He had dealt with my psychological issues and my infertility issues rather well, but he is one to believe that any and all psychological issues can be dealt with without medication. I believe there are some conditions that need to be dealt with using medications in order for someone to have that quality of life that everyone speaks of. I know I sure want to have it, but at times I cannot make my mind or body do it on its own. Sometimes I need medications to get over rough times in my life. My husband simply does not understand this, but that is okay. He loves me and he deals with my views and I deal with his. We work together and even if we disagree we do so in a respectful way.

On Wednesday I am going to the doctor to try another round of a fertility drug. I am hopeful that this will lead to a successful pregnancy and that most of my depression and anxiety will clear up as a result of a positive pregnancy test. I have been rather stressed and rather depressed because my husband and I have tried for 3 whole years (sex almost every day) and I have been unable to get pregnant. I am hopeful even though most of my brain tells me that it wont happen. If it doesn't, that is okay. I am prepared to live my life knowing that I will never have children, so if I do end up pregnant it will hands down be the most exciting time of my life.

I have seen a lot of posts on here about people wanting to give up and possibly even consider suicide. I have been down that path...not due to RLS...but due to other significant life events. I can tell you that things do improve no matter how painful (physically or mentally) they are.

I have been down the suicide path. I remember the night vividly and I doubt I'll ever forget. I took 72 OTC high blood pressure cold/flu pills, drank almost an entire bottle of vodka, and somehow managed to take an extacy pill. After it all started kicking in I just remember vomiting bright green. I had not had anything green to eat, so I'm not sure what exactly that was, but it was strange. I then remember laying down in bed and not being able to move at all. I remember thinking that this was it. This is how I'm going to die and it does not hurt. I felt nothing emotionally. I didn't think of my parents...I didn't think of the broken engagement that I had just lost. I didn't think about anybody else but myself and how I would never have to hurt again.
The next thing I know I am waking up late the next day perfectly fine, but groggy. I had survived and I was not sure how. My will to be successful at taking my life was very strong and I made sure to do whatever I could to accomplish it. I failed. At first I felt like I just could not do anything right and then I felt proud that I had survived somehow and thought that this must mean that I have something that I have to do or even I'm here for a reason.

I don't believe this way now. I don't believe I was given a second chance. I believe I did it wrong and could have managed to do something a little different and it would have worked. However, I am very thankful that I failed because I would not be where I am today. RLS is real. The pain and discomfort from it is real. But this is proof that I survived and I am able to feel a wide variety of emotions and sensations that I would have missed out on.

I want everyone to be strong and hold on...find something or somebody to hold onto. Suicide is not a selfish act, but I can assure you that there are many reasons to live. If you can't think of any then you aren't thinking hard enough.

<3
Thanks everyone for reading this loooonnnnggg essay! I've been holding all of this in so long it feels good to finally have it down in front of me. I hope that maybe someone can be inspired or feel more positive from reading this crazy mess.

[ViewsAskew]

It can be both scary and liberating to share like this. Hopefully you feel unburdened and relieved.

I think I mentioned a potential link to celiac disease in another post. Do get tested. I know it's a 1 in 100 chance, but anyone with several things going on along with RLS/WED and fertility issues - there is a definite correlation. There is also a correclation between celiac and mental illness - anxiety, panic attacks, depression. I'd hate to think there was a solution to many of these issues that was unexplored. And some people think PCOS may be a symptom of celiac.

Again, not saying you have it! It would be good to rule out. And, treatment is the easiest of just about any disorder - just change your diet (and ice cream is A-OK).

[Polar Bear]

Especially luxury chocolate chip ice cream

[peanut1]

I was agree that the symptoms of anxiety and depression can be health related. And we all know that anxiety ups the ante on the WED ie the severity of it. When I talked to my doc about having celiac disease he asked if I was having a lot of diarrhea.

[ViewsAskew]

The vast majority of people with celiac do not have gastro problems. They current research (and most doctors are about 8-15 years behind) shows there are over 200 symptoms of celiac. They also believe that the easy to diagnose people are the ones with gastro symptoms and that they comprise the 2-5% of the celiacs that are diagnosed. They other 95% that are undiagnosed have other symptoms. Many people, my husband included, had no gastro symptoms until he was literally dying. First he had a strange assortment of thing. Next he had neurological symptoms, including an eye twitch that didn't go away for a year. By the time he had gastro symptoms, he was rapidly losing weight. He went from 160 (he's 6 ft tall) to 135 pounds in about 2 months and looked like famine victim.

Celiac is another disease, like RLS/WED, where the vast majority of doctors have NO idea how to look for it or treat it. The average time to diagnosis is 8-12 years!

[badnights]

So, I laughed out loud at the ice cream part!
so well said.

It sounds like you've been doing some research. I'd like to emphasize the importance of paying attention to the type of place you get information from - to avoid misinformation and wasting your time. The RLS (soon to be WED) Foundation site, at http://www.rls.org, is reliable. The brochures on the Publications page are very useful and informative! Another reliable site is the one maintained by Dr Mark Buchfuhrer, an RLS/WED specialist, at http://www.rlshelp.org. Lots of info on medications and what he's found to work and not work.

For non-pharmaceutical remedies, I would first off TELL your doctor. You don't have to take anything he or she wants to prescribe! It's totally up to you. If he knows, then you might gain an ally in the search for non-pharma treatments. (Or maybe not, but you ought to try.) First, ask for your serum ferritin levels. (serum just means blood, but this is not any old iron blood test, it specifically has to be for ferritin levels.) If your ferritin is <100 ng/ml, you can try taking oral iron supplements (iron sulfate, or some kind of bioavailable iron) to raise it to 100 or more. Labs might say ferritin is normal if it's over 20, but research has shown that for people with RLS/WED, it ought to be at least 50, preferably 100, and the lower it is, the more severe your symptoms, in most of us. So get that ferritin checked, and take iron if you can!

Second, take a vitamin D supplement, You should get that checked first to be sure you're not way high , there is such a thing as D overdose, but most North Americans are deficicient, with 20-30 being the target level, anything under 30 you should try a supplement. I take 3000 IU per day in the summer, even though I work outside all day, and 4000 in winter. There has been one study that showed a link between low D and severity of RLS/WED.

Finally, there are tricks that help when the symptoms are coming on - for some of us, a hot bath - and when they symptoms are active - doing squats, or calf raises, or leg raises, etc; or concentration exercises, like concentrating on music til you fall asleep (not necessarily sleepy music).

And finally finally - yes, medications are necessary for psychological issues sometimes. Psychological issues are generally imbalances of neurotransmitters - who's to say how much of that any one person can control by act of will? No one should say that no one should take chemicals for psychological reasons... the evidence points another way. And just like meds are sometimes necessary for psychological issues, they are sometimes necessary for WED/RLS. (Just don't touch any of the Parkinson's drugs unless your ferritin is over 50.)

I am sure my WED got permanently worse after taking one of the Parkinson's drugs; and others here feel, like you, that it got worse and stayed worse after taking an anti-depressant. (It's documented that some anti-depressants cause or worsen RLS in some people, but supposedly it gets better once the AD is stopped.)

[dogeyed]

Gosh, Jessica, you've had a rough bunch of years, really has goofed you up big-time. I agree with Ann and Beth on their various thoughts and advice. I'd like to add a few things that might help you, too. First of all, if you have PCOS, then fertility might be a problem. So, a good OB-GYN is in order to hopefully improve that, plus my understanding is exercise and resting well help, too.

I, too, have panic disorder and all the anxiety, which came from a car accident that I never really got over, and as I aged, the various pains from fractures and whatnot worsened. So, in 1998, I was given Klonopin (clonazepam) to tranquilizer me and went thru a year (yes, a year) of therapy along with the medicine, and for the first time in many, many years I could ride in a car again. A litle after that, since the tranquilizer tended to make me feel depressed, they threw in Zoloft (sertraline) an SSRI antidepressant, which more or less took care of that. But I'm like you, I want SO much to get off it, so I'm glad you are.

So, in about 2003, I wound up with RLS. I went to my regular doc, she pegged it right away, and gave me Tylenol Codeine #3, which I still take, only I've been upgraded to Tyl Cod #4. Taking some sort of pain killer will usually knock it down almost immediately, you'll sleep well, and it will in general go away. HOWEVER, you may not ask for this, which is MOST annoying since it is in all the literature that this is one of several categories of medications that will help. But could be a couple of the other kinds will help and you'll do well. At least you'll know what does usually work, and you can circle it on the paper as being a recommended treatment if the others fail. By the way, your legs wiggling when you go to sleep is normal with RLS. I keep some knee-high support stockings near my bed and pull them on if I'm feeling my legs too much, and the squeeze is just enough to where I can go to sleep. One more thing about using opiate-type drugs. Many of us here have taken them ten, twenty years, only increasing dose a little over all that time, so as long as it's killing pain or stopping stuff like RLS, people don't abuse it. I might add that ALL of your conditions, including depression, will be helped by codeine or other drug like it. People cannot be happy if their health issues are all over the place.

As for your suicide situation, that really does put you in a psychiatrist/psychologist group's office. They can help you SO much when they know about this. I did read somewhere that antipsychotics can cause a couple of your list of disorders, but hon, I cannot recall those right now. You can look it up online, tho. If you do not wish to visit a psych office now, which is perfectly understandable, I want to tell you a couple things I learned since I was your age that keep life good for you. You are at a great age. You will feel full of energy and keep your looks for quite a while longer. Now, you've had your huge tragedy, and if you work at it, you can put it behind you and move forward. Spend your spare time doing interesting things you've always wanted to do, like learning to play guitar, artwork of some kind, volunteering at a local hospital, do lots of reading, and of courrse if regular exercise isn't something you're doing now, figure out what works for you and do it forever.

Hon, you have millions of problems. But there are treatments. And when you get straightened out a lot better than you are now, wow are you going to have a great time! We are the lucky ones, we have been giving this little life of ours, and the world is an unbelievably beautiful and interesting place. Feel free to post back to us on how your doc appointment went. We want you to go from to this But if you are shy, that's okay too. We listen to many sad stories, also, and try to just give support. GG