New to Site

[Jordan]

Hey all! I'm new to this site, but not new to RLS/WED. I'm 90% certain that I have it, but still am not diagnosed. I figured I'd share my story, hear your opinions, and maybe get some tips on lessening the symptoms?

My name is Jordan, 17, i am a Male, and I think I've had WED since before I can remember.

I've only come to the realization within the past few months. I originally thought this pain in my legs and pelvic area was 'normal'. The best way I can describe it is in my leg joints, it feels like the sensation that I need to stretch, but stretching does not relieve it. In my legs and pelvic area, it is a tingly feeling. According to my mother, I told her when I was a child that 'I have RLS' upon hearing a TV commercial. She didn't really take me seriously, and the topic was dropped. I have no recollection of this, and didn't even know RLS existed until October. Since 2011, I've been dealing with Anorexia, and didn't tell anybody of my pains because I began to believe that it was a result of malnourishment.

Now in recovery, my ED nurse practitioner diagnosed me with Insomnia and tried many, many medicines to help me sleep. Antidepressants, Anti-Anxiety pills, Melatonin/Valerian Root, and relaxation techniques all failed. When my Insomnia wasn't subsiding, she finally put me on Ambien -- which I assumed would work. It did.. For a few nights, but quickly stopped. Ambien CR, same thing. She was literally running out of options, and put me on an antipsychotic, Olanzapine. It worked at first.. and now, not at all.

She eventually told me that I needed to see a PCP upon finally realizing that there was an underlying cause to the insomnia. The doctor ruled out arthritis and other inflammations. She refused to diagnose me with RLS, for two reasons: a) I was not in my 60s and b) I refused to do an overnight sleep study (I was in an intense recovery program that only enabled me to see my parents two hours a day.. I wasn't leaving them anymore.)

These pains are literally a nightmare. I'm rolling around my bed, moving my legs, just trying to get myself to fall asleep... How is it that an antipsychotic isn't even getting me to sleep! I wake up dozens of times throughout the night, and wake up completely fatigued. The sleep that I do get is not refreshing at all. I walk around school and literally fantasize about sleeping when I get home. I'm fighting off falling asleep all day. My legs do hurt during the day, but it's a significantly less degree and I can usually ignore it. I sometimes wonder if I have Chronic Fatigue Syndrome, but my mother , having Fibromyalgia -- essentially the sister illness to CFS -- thinks that i definately don't.

From November - January, I was on Prozac... And had to be taken off of it for 'hypo manic-like side effects.' I was quite surprised. I assumed I had ADHD that was 'hidden' by my Major Depressive Disorder, or maybe even Akathasia... imagine my surprise months later when I read RLS can be worsened by Prozac.

Do you think that I have WED? I have a physical on the 17th with a new PCP.. I'm debating wether or not to bring it up. I don't want to be rejected again... nor do I want to end up being diagnosed with something along the lines of somatoform disorder.

If you do think I have WED, what can I do to lessen the symptoms? I know Klonopin and Lyrica have been mentioned as treatments... Unfortunately I'm severely allergic to Klonopin, and my mother takes Lyrica for her Fibromyalgia... And it's quite expensive, so I can't do that.

I also have an odd question: I know that soda can worsen the symptoms. Does anyone know if SodaStream soda counts? It's not exactly 'real soda'.. But is pretty much similar.

All I want is to be able to sleep. It's really just all I want.

P.S.: I have MDD and numerous Anxiety Disorders - my NP ruled out those reasons for my troubles.
I take Effexor, Lorazepam, Minocycline, and Olanzapine.

Thank you!

[debbluebird]

Ok, here is what I know. Sorry that you are having such a hard time. You might have RLS. The moderators here will ask you some questions, once they read your post. That way you will know what to say to the new doctor. I would encourage you to have the sleep study done, but talk to the new doctor about it. Also, if you have RLS the Effexor might be making it worse. It did for me. Most antidepressants do. I don't think your antibiotic should make the RLS worse. I don't know about the Olanzapine, whether it would make it worse or not.
Regarding the Sodas, yes, they make mine worse. It's the aspartame in them. There is aspartame in most foods that say no sugar, like pudding, jello, etc. The Soda stream is a different sweetner and should not affect the RLS. I have one and it doesn't bother me.

[ViewsAskew]

Aw, that just sucks! BUT, it can get better.

So, are YOU sure you have WED? The criteria are pretty simple - you have this STRONG urge to move, often accompanied by an icky feeling (painful, electrical, pulling, and so on), that is worst when at rest and at night, but goes away or is greatly reduced when you move - walk, rock, run, do yoga, and so on.

That is the diagnosis. There is NO sleep test you need to do. Not for WED. Of course, you do need to rule out some things - but sounds like they may have done that.

You may, though, have a second and often associated disorder - periodic limb movements - or PLM. These can happen during sleepp (PLMS) or during wakefullness (PLMW). The sleep study would find these.

You read that Prozac can worsen WED. So can all SSRI and some of the other classes of antidepressants - while the percent bothered is relatively small, every one of them is a potential problem. Much more problematic is that almost ALL antipsychotics make the symptoms worse!

A couple things that may help - people with WED are up to 14 times (Beth correct me if I have that wrong) likely to have an anxiety disorder and 2 or 3 times more likely to have depression. It's all related to the chemistry in our brains - it's a bit out of whack. My niece, who is 18, had bi-polar and WED. My sister, mom, uncle and grandma all take anti-depressants and have WED. So, it's common to have these things going on at the same time.

First thing you can do - download the RLS Medical Bulletin guide for healthcare providers from the WED Foundation's main site. There are a lot of documents there in addition to this one. This one can help educate your NP and your doctor. http://willis-ekbom.org/page.aspx?pid=524 . Notice on the brochure that it says that doctors should test for serum ferritin. Ask doctor to do that ASAP.

It is very possible that the Effexor and olanzapine are make the symptoms worse. Only you can know if you think it has felt worse since you started them. It also may be that you don't need them.

You mentioned that you're in recovery for anorexia. Malnourishment could easily have caused you to be low in some nutrients. While your doctor is doing a serum ferritin test, also get a hemoglobin test. You could be anemic. Other things that some of us have noticed make a difference are vitamin D, vitamin B complex, calcium and magnesium. Recently, people have been noting good results with amino acids and another thing I can't remember the name of! Read recent posts - you'll find it, because we've been talking about it in the last month.

Lorazepam is a lot like Klonopin, and Klonopin works for a minority of people, so not sure it would help.

[jakesmom]

Welcome Jordan !!!!!!

I'm sorry that you are having so many issues at such a young age. I realized I had RLS/WED from that commercial also. As Views suggested, bring the brochure and definitely bring it up to your PCP. If you do have it, nothing short of anesthesia will enable you to sleep. I would be willing to bet if your PCP gives you a starter pack of Requip or Mirapex to try, you will sleep like a baby.

The moderators on this site ROCK, so if you have questions, don't hesitate to ask.

[Polar Bear]

If it is determined that you do indeed have RLS/WED and if your doctor should offer you a starter pack of Requip or Mirapex ---- -------- your serum ferritin should be up at 100 before you start one of these drugs.

If you take Requip or Mirapex (or any other DA medication), and your ferritin serum is low, you run a much higher risk of augmentation which is when that particular type of medication kicks your symptoms into a very severe overdrive where the only solution is to come off that particular medication, which is not easy.

[badnights]

Hi jordan
sorry I can't check the figures Ann, I'm not on my computer, just on a tablet, but
jordan, you get the idea, depression and anxiety disorders are very often co-morbid with RLS, adn not just because the darn disease makes you depressed and anxious - it seems there might be a common root cause to all of them.

Other things super common with RLS are gut issues - irritable bowel syndrome, celiac, Chrohn's. But that's an aside.

Your doctor needs to learn a bit more about RLS/WED, especially about pediatric RLS : YES it happens in children. How bloody sad you've had to take all those meds... the anti-psychotics do worsen RLS so if you need them, the prescribing physician should be aware and able to deal with the increased symptoms. Again, a bit of education is needed. Make sure you print the link Ann gave you, read it yourself (highlight the parts that are relevant to you!) and then GIVE it to your doctor, and ask him/her what he thinks of it. If it looks like he's not going to read it, ask if you can make another appointment to discuss it after he's had a chance to read it. Ditto for your NP. I hope you have access to a printer. There is also a pamphlet on pediatric RLS at willis-ekbom.org but the bulletin in Ann's link (also in PB's signature) has a section on it as well.

For gods sake don't start pramipexole or ropinirole without knowing your ferritin is above 75 ng/ml. If you start them with low ferritin, you will be at high risk for augmentation (see the link in my signature for some basic info). /in fact, be sure you know the signs of augmentation , so that you will recognize it if it happens. Getting ahead a bit, and it might not be necessary, but I would like to help everyone on earth avoid the horrors of augmentation. It can happen even with high ferritin, just is less likely, and is strictly a consequence of taking dopamine or dopaminergic drugs (for some people).

[wabbit]

Hi Jordan,

Welcome to the site. In regards to Mirapex, it works wonders for me; however, it can cause augumentation and is dangerous for those with heart conditions.

Although what I write below may not be what you are asking, this is very informative, not only for you but for all members. It is not just regarding Lorazepam but all medications. Depending on what the condition is, it is extremely important to know whether to take a brand or generic. One should not switch from a brand to a generic, from a generic to a brand, or from one generic to another generic depending on the condition one is taking the medication to control, which I will get to after the next paragraph. I can't cut, copy, and paste on his ipad without messing up the paragraphs.

I notice you were or are still on Lorazepam. Lorazepam (Ativan) is a benzodiazepine and is also used as an anti-convulsant to stop seizures. To stop seizures Lorazepam is injected in hospitals or the doctor can prescribe it in tablet form to stop seizures. My neurologist prescribed this for me 17 years ago when I had seizures in clusters but he gave me specific warnings and directions. He told me to place the tablet(s) under my tongue and let it absorb; by doing this the medicine does not have to be digested and has a direct effect on the brain. He warned me to take only when absolutely necessary because what happens is the body system becomes immune to it and you have to take more and more until suddenly it no longer works. If this is happening to you, talk to your doctor. I did exactly as my neurologist said. I took no more than directed at one time or within the entire day. When I felt a simple partial seizure (aura or warning) come on I put an Ativan(s) under my tongue to stop the simple partial seizure from spreading into the deep temporal lobe, which would have resulted in a complex partial seizures (conscious but no recollection of what happened or was going on around me). The complex partial seizure was not able to spread to the entire brain, which would have resulted in a secondarily generalized tonic-clonic seizure (100% unconscious and on the ground).

Generics do not work as fast as the brand. I know this for a fact because when I took Ativan one day the seizure did not stop as fast. I looked on the tablet and didn't see the letter "A" on the back of it. It was a generic. The brand worked faster. This also happened to me with Tegretol, an anti-convulsant. If Tegretol came out too slow, I had seizures; if Tegretol came out too fast, I would get double vision, nausea, vomiting, staggering while walking, extremely dizzy, etc. Taking the right medicine, whether brand or the staying on the same generic, is also serious for those with Parkinson's Disease, epilepsy, thyroid, heart conditions, blood pressure, or any other condition that must stay consistent. I'm not talking about a cold or runny nose. Keep in mind that although generics have the same active ingredients, which is required by the FDA, the FDA allows a bioavailability of up to +/- 20%; they can have different anti-fillers such as coatings, dyes, etc. This ends up making the chemical come out too fast leading to possible toxic effects or too slow resulting in slower or no results. If a generic works for you make sure you always have the same generic. Did you ever notice the doctor will tell you to take a medicine two times per day, you take it to the pharmacy, then suddenly notice you are to take it 4 times per day or vice versa without the doctor knowing. This is because of the chemical in the medicine not being released at the same speed (too slow or too fast). Pharmacies buy medicine in bulk at the cheapest price; think of it as the dollar store. Generics are not always equivalent. Many medicines have a narrow therapeudic index (NTI), which means the slightest rate of absorbency can have a serious impact on the condition. For example, if the medicine comes out too slow, I do into seizures; if it comes out too fast, I get toxic effects such as nausea, double vision, stumbling while walking, etc. If you need a brand the doctor must write DAW (dispense as written). I don't know how serious a generic and brand is regarding RLS and Fibromyalgia because I am in the learning stage also but I do know how medicine works due to 40 years experience. Don't let doctors, the FDA, and pharmacists fool you. I have experience and will not allow a generic for epilepsy. I take generics only for minor and tempory conditions. In regards to WEB and Fibromyalgia, I have to learn what is best for me, generic or brand depending on the medication and how fast or slow it works and the type of effects each one produces. So far generic Mirapex is working well for me but each time I get the medicine I have to make sure I get the exact same pill by looking on the front and back to see if lettering, color, shape, etc. is different and to make sure the time, quantity, and how often to take the medicine is the same. Don't be fooled that just because a drug company has the same name that they carry the same generic. Keep in mind that they are a franchise and have different generics, whatever they can get at the cheapest price.