Extremely Hopeless - Has Anyone Learned to Cope?

[Ellephant]

Hello,

What I would like to ask is: Is there ever any relief or significant improvement in quality of life for anyone with RLS?
I'm not really looking for emotional support or for someone to tell me that it will be okay - I'm looking for objective answers, because I really do not think that it will be okay.

I'm 25 years old and about 3 weeks ago I experienced the onset of relatively severe RLS and PLMD. I'd had anxiety-related insomnia for two months prior to the onset, but I'm pretty sure that I was born with RLS because I remember having trouble sleeping as a kid because of my legs. Ironically and unfortunately, the RLS kicked in right as I was starting to sleep normally again 3 weeks ago. Ambien and Xanax have not been helpful, and the dopamine agents that specifically target the RLS symptoms sound like a nightmare with their side effects (I've also had a binge eating disorder, so am petrified that they would trigger impulsive behavior). All my vitamin and blood levels checked out fine, and all of the other tests the neurologist did came back negative. I've tried every possible non-pharmaceutical approach, including acupuncture, but the second I stop doing any of those things, the symptoms immediately return.

I was in the process of applying to graduate school for cognitive neuroscience as this all happened, so I like to think [hope] that I'm relatively well-versed with medical literature. I've exhausted Pubmed and the internet in terms of looking for successful cases of longterm symptom management. I haven't found any. It seems that all of the effective drugs inevitably become ineffective after a short time, and the RLS continues to progress. As a 25 year old, that sounds incredibly bleak. What would happen after I've augmented to or found the side effects of every medication to be intolerable, while the RLS progresses and gets worse, and I'm like, 27 years old? I don't think I have it in me to live for 40 possible years in this condition. Additionally, it seems that all of the drugs can only be taken at night and cause extreme fatigue, which of course won't be helpful during the day, when I can barely even sit down. There is never any time frame or window where symptoms are milder for me. I've tried medicinal cannabis which sometimes helps, but again, it really defeats the purpose of eliminating the symptoms if you're going to be high and disoriented the whole time. I don't want anything that negatively affects my cognition.

I completely understand many people on this forum have been tolerating what I've only recently started experiencing for years and years and my 3 weeks seems like a ridiculous thing to be flipping out about. I know. But I can't sleep (obviously) for more than about an hour a night, I can't stand or sit still which means I can't be productive and get any work done OR do any of the things that I used to like doing, such as photography or reading. I can't be still and focus on anything because of the feeling in my legs, and sometimes arms. And even if I could, my sleep-deprivation makes it impossible to have any kind of short term or working memory.

And the worst part is, as I'm sure everyone here knows, is that there is no way to distract yourself from the physical torture no matter what you do, because that's the entire condition. The second you try and calm down and relax and tell yourself it's not the end of the world and try and watch a movie to get your mind off of it or go for a leisurely walk, the symptoms flare up to an overwhelming degree. It seems that the only way to achieve any kind of physical relief is actually by freaking out.

I absolutely cannot live like this for the rest of my life, and given all of the prognosis information out there, it seems that it's either live like this for the rest of my life, or don't live. I wouldn't say that I'm otherwise depressed (I know that sounds odd given the information I disclosed about my past but, for the past 3 years I've been in a really good place in my life) and I was really looking forward to the future. I don't mean for this to come off as a suicidal cry for help, but I feel like that might end up being the better - and maybe even more rational - option, than living with this and knowing it's going to get worse, because really, this isn't living at all. I feel like I'm a vegetable being kept alive, but instead of being unconscious I'm still experiencing all of the physical pain. It's literally torture. I know this isn't news to anybody here - but it's news to me haha. I'm of course still going to give the dopamine agents a try, but even if I can tolerate the side effects, I feel like that would only be even worse for me mentally and emotionally, because I would have experienced briefly what it was like to live like a normal person again, only to inevitably have to deal with all the medications becoming increasingly less effective until I'm back to where I started.

Additionally I was wondering if there were any concrete statistics available regarding the suicide rate among RLS patients. I don't think it would sway me one way or the other, but again, just trying to find all the facts, because I really don't want to throw in the towel until/unless I absolutely have to.

Thanks to everyone who has read this far, I know this post was super long.

[ViewsAskew]

I think there are absolutely many cases of successful management. I also think it's not easy, you have to be vigilant, that some of us have greater success than others (unsure of why), and that being as knowledgeable as possible is essential.

Xanax could be the cause behind the worsening. For what it's worth, if you have WED, you can't have PLMD - this isn't clear in the literature and many doctors use the incorrect terms. You'll see a lot of us here call is PLM or PLMS, meaning PLMs during sleep. There is also PLMW, meaning PLMs during wakefullness. Or just PLMs taking about the movements themselves.

I've had PLMs since I was a toddler. I don't think I recall WED/RLS until I was a pre-teen. I waited until I was losing work and couldn't function because I had your concerns. I lost a lot during that time when I didn't get help, including this contributing to the loss of a long-term relationship and subsequent divorce. After I sought help and took a dopaminergic, I immediately augmented at a time when people didn't understand much about augmentation, so suffered another few years figuring out how to resolve it. I've been at the worst ends of it from every direction. But, I work now, have figured out how to manage it relatively well, and am able to function at about 80 percent of my pre-augmentation self. Had I started where I ended? I don't know. Had I started earlier, knowing what I know now? My guess is that I'd have had an even better outcome.

I don't think anyone with severe symptoms has a choice. You get to the point that you cannot function. Having had PLMs since I was a toddler, I don't ever recall a time that I awakened fresh and ready to go. But, I was lucky - I was relatively smart. So, I could function anyway. I had a really good memory, so school wasn't a problem. But, as some time, memory became a problem. And the 9 hours I needed to feel even remotely okay became 10, became 12, and eventually it didn't matter. I never felt OK, rested, awake, alive, good, functional. For me, the downward trend started in my twenties.

I'll never know what my life could have been like if I knew what I know now when I was 25. But, the things I know include the following:

1. Never take a dopaminergic unless your serum ferritin is at least 100 and your hemoglobin is well within normal range. Even then, that may not be high enough. Get to know Dr Earley's work on ferritin. It's important.

2. If your serum ferritin is below 100 and you need treatment, get an infusion as soon as you can. See what happens. See more about infusions at viewtopic.php?f=5&t=8439&p=68352#p68352 and posting.php?mode=edit&f=4&t=8476&p=69075.

3. Many people have no difficulties with opioids. There is a study somewhere (I couldn't find it when I looked, but it's here somewhere) that shows people with WED have a lower risk of addiction than other people do. We can, however, get tolerance. Taking breaks regularly is one way to avoid it. I am one who suffers from tolerance after 6-10 months of a dose increase. But, by taking breaks from it, I've managed over 3 years without another increase. So, know the value of opioids and know that there are ways to prevent tolerance.

4. Many people can go years without augmenting. If your ferritin is 100 or more, the chances are significantly decreased that you will augment. But, some of us wonder if augmentation happens no matter what, even if it is 15 years later. We don't know, but it's starting to seem as if it very well may happen. Because of that and of the risks of tolerance, what I've learned is that unbroken mono-therapy appears to have higher risk. If I were starting out now, I'd want to take something for awhile, then stop and take something else. And alternate. That schedule can be daily (which is what I did for a long time) or longer, such as take a dopaminergic for 5 days and an opioid for 2, or take an opioid for 3 weeks, then a DA for a week.

5. Many of my epiphanies have come from reading this board. In some ways, we see trends long before they show up in research. When I joined, I read every old post. Now, there are many thousands of posts added since I joined and I don't think anyone could feasibly read them all if they started today, reading the sticky posts and any referenced posts are a good way to see what we're seeing.

I have more to add, but need to take a break. And, as always, please remember that this is my personal opinion. I may consider it to be an informed opinion, but there is no such thing as completely objective and we're still learning about WED and PLMs, so there is still much that is conjecture.

Welcome to the board.

[badnights]

I am all over the place in this post, sorry, I should take the time to fix it up when I am not tired, but your fear and worry resonate so well with me.

You are doing a typical anxiety thing, projecting way into forever. This is not as big or bad as it seems, and it most certainly will not stay the same as it is now all the way into the future. Just because you cannot at the moment imagine how it might get better doesn't mean it won't - you merely don't have enough information to predict your own future.

First look for something that might have happened 3 weeks ago. Was there a lifestyle change or an event that could have caused your WED to flare up? The biggest culprits are older-generation anti-histamines, antipsychotics, anti-nausea drugs. anti-depressants (some of them for some people), and coffee. As Ann mentioned, the Xanax might be a problem, if that's when you started it? It's also possible you just didn't notice the RLS/WED before 3 weeks ago, because you weren't sleeping; but the sudden worsening sounds like it was triggered by something.

Second, immediate relief.
- Anxiety levels and worry about the future unfortunately make it all worse. The typically recommended ways of relaxing, that involve being still and doing forward bends or medidating in a still position, are not going to work for the WED patient. I've found it calming to focus the mind on steady breathing while doing weight-bearing and balancing exercises that require leg and arm muscle contraction. Like yoga, but not the still stuff when the symptoms are going nuts.
- There are other movements that kill the symptoms immediately before sleeping: sqauts against a wall, ankle lifts until your muscles burn, leg raises while lying down. When the symptoms wake you up, do these immediately.
- Sleep when you can. Forget the sleep-hygiene advice that says to refrain from daytime naps. This disease robs us of sleep, and if it backs off at 1 PM and decides to let us sleep then, we should do so.
- Concentration: mental focus on something else alleviates the symptoms. This is OK for daytime relief, not so good for nighttime, and a pain in the arse when you're exhausted. But still, it's good to know.

Third, medication. You haven't tried any yet, so you have a lot of options. First tell your doc about the apparent side effect of Xanax, if the timing is right for that to be it, and ask for a different anxiety drug. If you try WED meds, keep in mind, everyone's response to a drug is different, and surprisingly, a specific drug that makes lots of people sleepy during the next day will not necessarily make you or me sleepy. There are medications that cause horrific problems for one person and save life for the next person. We know so little about predicting how they will affect people, except this, and it's important:
- don't try the DAs until your serum ferritin is above 100 (or 75 at least). They are more likely to cause augmentation when ferritin is low. Was ferritin tested for in your blood work?

Although the primary form of WED is progressive, its progress can be quite slow; definitely slow enough to have a good life. People who have "recovered" include those who had WED from fixable secondary causes, and some primary patients who have had iron infusions. People who are stable on their meds and happy with their lives sometimes post on this board, so I suspect there are quite a few of those out there. People who are not stable, who have ongoing side effects, who have not found a balance of medications that satisfies them, are the ones who post on this board.

The impact of WED can be severe, and I have a personal thought process going that is wondering if maybe it is felt more severely by people with high energy and ambitions to achieve high-energy things - people who define themselves on the basis of their energy, drive, academic ability, cognitive acuity, problem-solving abilities, social networking skills, or social liveliness. Where these things are not so important, not the basis of a person's self-concept, maybe the disease's impact is dealt with better. The difficulty a person has in accepting the impact of WED/RLS is, I think, directly tied to how much our concept of self is bound up in what we can accomplish.

That said, I don't know anyone who is spiritually perfect enough to not be impacted this disease. It is brutal hard to think you won't be able to accomplish your dreams. But it also wrong to think that you won't. One thing I've learned is that how we are today does not predict tomorrow or next year. There are as many ups as downs here. Just imagine if Xanax is the problem, and it's changed for something else, and the WED/RLS fades back to what it was before. Won't you feel glad you didn't throw in the towel?

More on meds for WED:
There are three main DAs used : pramipexole, ropinirole and rotigotine. The latter is a patch and might be associated with the least liklihood of side effects.

-Besides DAs, there are anti-convulsants and opioids. The anti-convulsants have a side effect in 1-2% of people of causing mood disorders, so they're not first choice if you're already depressed or suicidal but apparently have a better track record with painful symptoms than non-painful symptoms. There are three main anti-convulsants used (pregabalin, gabapentin, and gabapentin encarbil) but only the latter (trade name Horizant) is used on-label for WED. It has had a lot of positive reviews by users on the WED Foundation facebook page. There are others as well, not as common but people have used them successfully for WED/RLS.

-There are a bazzlion opioids. The opioids always work, although many people have problems with side effects with one or other of them. Unbelievable though it may sound the side effects can be worse than the WED itself, so these people have to experiment to find one they can tolerate. Many people end up using combinations (opioid and DA, or DA and anticonvulsant), or less commonly rotating (DA today, opioid tomorrow), to avoid side effects or to avoid tolerance. The other problem with opioids is physician ignorance, and the need to handle your physician with care so he doesn't think you're drug-seeking. With this disease in general, there is a need to handle your physician with care so he doesn't think you're trying to tell him how to do his job.

Some people are successfully using non-prescription opioids like poppy seed tea and kratom.

Some people are using various amino-acid formulations (eg. nutralife's ghpSport but I hear the formula might have changed to something less effective, and Western Reserve Labs "RL Solution" pills) and some people take 10 g of d-ribose powder to kill a bout of symptoms.

So - lots of options.

More advice:

- get your vitamin D tested. Low D has been linked in one study, and anecdotally by a few people on this board, to worsened WEd symptoms

- Vitamin B12 and Mg deficiencies can cause WED symptoms, apparently

- all intestinal troubles seem to increase WED severity. The prevalence of WED in the general population is only 10%, but is 40% in people with Chrohn's, 30% in celiacs. There is a positive correlation between WED and IBS, SIBO, and probably other intestinal conditions. Maybe because they interfere with iron absorption. Maybe some other reason, because opioid receptors are abundant in the guts and we know this disease involves endogenous opioid-system malfunction. (Not that I've ever heard anyone in the literature mention that connection.)

Sorry this is disjointed. In answer to your final question, no one I know of has done statistics on WED suicides, but I suspect they were higher back when no one knew the disease and no one offered any hope. Now, we have ever-increasing physician knowledge, and lots and lots of hope. As someone said to me when I first posted here, suicide is a permanent reaction to a temporary problem.

It is never worth throwing in the towel. Biologically, we are hard-wired with a desire to live. That is who you are, basically: someone who wants to live.

The future is never going to be the same as now. A depressed person will assume the future will be the same or worse, but experience does not bear this out. For all you know, the physiological underpinnings of this disease are being unravelled right now in Dr Allen's lab, or Dr Ondo's, or Dr WAlters, or any or all of the other people researching it. And there may be a cure next year. There will certainly - I have no doubt of this, I will place money on it - be more and more effective medication over the next 5 years. This is not a game-ender. It's just a bodily malfunction that can be dealt with.

[Polar Bear]

Such a wealth of information and good advice in the replies from ViewsAskew and badnights.

You are feeling desperate now, that's how come you were searching and found the Foundation and our Discussion Board.
That is exactly how all of us found it.... I was truly desperate and looking for help, never dreaming that there would be an actual Foundation and Discussion Board.
I joined, and then felt embarrassed about telling my husband, almost as if this disease didn't merit such attention. Now I shout it from the rooftops. I have WED Foundation cards stuck on my car rear window just in case someone who is suffering would notice it, see the web page details, and have somewhere to turn to.

The point I am trying to make is that..... there is a future, there is a better time. Medication does help. Sometimes it takes a little trial and error to find the best combination. But you will find relief. You clearly have a lot to offer and don't forget, when you have sought medical help and find what works for you, you will be in a position to help others who find themselves suffering with WED/RLS.