Just diagnosed, have a few questions

[restless_twitcher]

Hi all!

Not too happy to have to be here considering the condition, however I am glad this place exists for people suffering from this very real disease. I was diagnosed about 1 week ago by a neurologist and am awaiting an EMG / Serum Ferritin to ensure nothing else might be going on. I have a few questions about my condition and wanted to know if anyone else could relate.

Everything came on rather quickly after a viral infection. I had the feelings in my legs first after taking cold medication. I just chocked it up to the cold and the meds and forgot about it. The feelings went away for about 2 weeks, then came back full force. I feel a crawling/pulling sensation in my arms and legs with varying degrees of intensity throughout the day. It definitely gets worse in the evening, however I am fortunate in that my sleep has not been badly effected. I also have PLMD and I know these conditions are related. Klonopin has helped me through the bad days/nights.

I do have some symptoms which seem to be separate from my RLS/WED which bring me to this forum. Muscle twitching has been a component. I guess the medical term is "fasciculation", which is why I am having the EMG done. Both my GP and Neuro think they are benign but they never mentioned a possible correlation. I also suffer from anxiety as a direct result of these symptoms. I had been a healthy, athletic 24 year old male until this all started 4 months ago. My questions are as follows:

Did/does anyone else suffer from random twitching (BFS) as a co-morbid condition?

Did/does anyone have anxiety/depression related to their WED/RLS?

Is rapid onset a normal feature of this condition or does it indicate some secondary precursor?

I had a particularly active summer, riding nearly 3000 miles on my bicycle. Did/does anyone notice a correlation between aggressive physical activity and RLS/WED in their case?

Answer all or none of the above. I am just a newbie looking for some insight into this condition and interested in your subjective experiences. I am certain this effects people in different ways but any input offering catharsis would be appreciated as well

Thanks!

[Rustsmith]

Welcome to the board, and don't take this the wrong way, but congratulations on finding good doctors who were able to give you a quick diagnosis. Many of us suffered without treatment because our doctors had no idea about how to diagnose and treat WED. As bad as WED is, getting an early diagnosis and beginning treatment will lead to a better life than having to cope on your own.

Muscle twitching - As to your questions, I have had intermittent issues with muscle twitching over the years. It seems to go and come. Wikipedia indicates that there can be a relationship with a magnesium deficiency. Some people have reported positive results with magnesium supplements for WED, while it has not been of benefit to others. Personally, I ignore them and they usually go away in a couple of days.

Anxiety/depression - As you look through the board you will see quite a number of discussion threads on anxiety and depression. True anxiety can be tied to sleep deprivation, which is one facet of WED. In fact, the last WED Founcation webinar was on just this topic (you can view past webinars if you are a Foundation member). In the presentation, Dr Becker pointed out that anyone suffering from the insomnia that comes with WED will satisfy the diagnostic criteria for anxiety/depression. I know that in my case, I have a physical feeling of anxiety when my WED is untreated but not any of the mental aspects.

WED onset - The speed of onset of WED varies from person to person. For myself, WED seemed to come out of no where when I retired. However, as I learned more about the symptoms, I realized that I had probably had a milder case for most of my adult life. I had learned to cope with it while it was mild. Also, there are cases of primary and secondary WED. Secondary WED is tied to some other condition, such as kidney dialysis, pregnancy and conditions such as MS. Primary is anyone who is not a secondary case. Primary cases may be genetic, especially when the onset occurs before age 30.

Physical activity - Many report that vigorous exercise can be a trigger for they symptoms. Ironically, moderate physical activity can be of benefit. But for others, exercise appears to not have any effect. I am a competition class runner and have never seen any correlation between my races or hard workouts and my WED symptoms. So just as with any other treatment or trigger, it is unfortunate by you have to figure each of these out for yourself.

[restless_twitcher]

Rust,

Thank you for your detailed and informative reply.

I am blessed to have good doctors. My neuro went through idiopathic vs secondary and the different options for treatment. I am secretly hoping my ferritin levels are low as this would indicate some form of cause. My primary concern has been neuromuscular issues/disease. I have lurked the forum for BFS (Benign Fasciculation Syndrome) for answers as well and a lot of those folks mention WED/RLS. It seems people with these odd conditions often suffer from health anxiety of ranging severity. This is definitely a huge component of my current condition. The flip side, of course, is that long-term medication for depression/anxiety can exacerbate both twitching and WED symptoms. It's frustrating to say the least.

I supplemented with magnesium for about a month at the beginning of all of this and I noticed no real benefit for twitching or RLS. Both seem to respond well to heat, specifically when I shower. The twitching is definitely fueled by anxiety and I find if I can control this, my twitching decreases in scope and severity.

Exercise has been a trade-off in my case. It often increases WED symptoms later in the evening BUT I get a huge anxiety/depression benefit from it. For me, the cost is worth the benefit, especially with my good friend Klonopin to help at bedtime if need be.

I have always been a realist and would really like to bookend this situation for myself. If you have any tips or trick in terms of coping with this disease, I would love to consider them. I think treating the condition is important to improve quality of sleep and life but I feel the most important aspect is to accept it and learn to live normally again. I feel as though my life has been put on hold since this began and I really just want to get a grip on it and move on.

As a side note, my Grandmother had undiagnosed RLS/WED until the day she died. Anecdotal, but this is what my mother tells me.

[ViewsAskew]

My best guess is that in coming years we will either find relationships to other neurological conditions, or even that some of what we think is WED is really something else.

The research suggests that people with WED are 2 to 3 times more likely to suffer from depression and up to 15 times more likely to have an anxiety disorder. Most of us find that they are very linked. And, it makes sense. Anything that exists because (in part or in whole) the brain's neurotransmitters are faulty in some way is likely to affect mood, cognition, desire, and the like.

Many of us have found that initial exercise - if we've not been doing it - or initial increases - are often associated with a temporary increase, but once it's regular, we actually feel better. There is some research to back that up. The research studied moderate activity, however.

There are thousands of posts here about people learning to cope. I'm not being snarky when I suggest you read some. It's because the dratted disease is so personal in many ways. If you follow the link in my signature, you'll get to a post that highlights some of what we know about it. It may help you get started.

Acceptance is both easy and hard. I accepted it long ago. What I have struggled against accepting is its limitations on my brain and performance. As someone who found learning and memory were gifts as a child and young adult, I know have to work much harder. I am not a walking calendar any longer, remembering everything I need to do. Lack of sleep, for many years, has taken a toll.

Being here, learning, listening, sharing - that has allowed me to work on the second acceptance. I hope it does for you, too. Welcome - though I really do dislike doing that as I'd much prefer no one ever needed this board ever again!

[Rustsmith]

Sounds like you have already gotten a pretty good education in WED.

Everyone has their own coping tricks. You have already found the one that seems to work for almost everyone, namely hot water. Many like very hot baths, but personal preference is a very hot shower that hits the back of my neck. Another coping mechanism that works for many is simply a trick of mental distraction. Here, the trick is to find something that you enjoy and that requires a lot of concentration. This could be a computer game, a good book that you can get lost in, or a crossword or sudoku puzzle. The trick is that it has to interest you enough that if you can block out the WED, pretty soon the symptoms will calm down.

As for the ferritin, do not be too surprised if it is low. However, not everyone benefits from treatments that increase the ferritin levels. My doctor has said that iron treatments appear to be less effective for those of us with WED genetic issues.

As for your grandmother, I understand the anecdotal aspects for you. For me it was my father. My diagnosis came shortly after he died, but there were enough stories to lead me to believe that he had a somewhat milder case than I do.

Finally, there is one anti-depressant that is compatible with WED, Wellbutrin (bupropion). It doesn't work for everyone, but it is worth a try if you need something other than exercise. I have been fortunate in that respect. I started running for my long term health and then realized that my episodes with depression had vanished. My wife told me that she will not give me the choice, I cannot stop running. Which will be fine until I end up with a career ending injury.

[Polar Bear]

There are many different coping tricks which can work more for some than others. Many sufferers get benefit from the hot showers/baths as mentioned by Rustsmith, whereas I prefer cold showers on my legs from the thighs down, really cold for perhaps 15 minutes. It works for me.

Also there are so many gain distraction from mentally being engrossed in something challenging and I've never found mental distraction of benefit.
Moving and walking is almost my only coping mechanism (apart from medication).

What I'm trying to say is that if you try something and it doesn't work for you, don't be dishearteded because there will be something else to try.

[restless_twitcher]

Thank you to all who replied. All of these responses have given me a lot to consider in the coming days/weeks. I am having my EMG done today so I can get some peace of mind about anything sinister. I did want to address another aspect of my RLS and see if anyone had some input.

My condition doesn't seem to be as severe as many on this board. I feel for those who struggle with this so mightily they lose appreciable amounts of sleep due to their symptoms. This is fortunately not the case with me. In fact, I normally sleep quite well. The feelings I get are more uncomfortable than intolerable. When I explained them to my neuro, I told him it was like when you hang upside down and blood rushes into your head but in my arms and legs. It's an uncomfortable feeling of fullness or heaviness for me. It's also transient in that I have days where I feel nothing and others consumed by the feelings. When it began I also had an inordinate amount of fatigue. I was just exhausted all the time. This backed off quite a bit and I have returned to relatively normal energy levels.

I have also experienced random muscle aches in my shoulders and quads. These, like everything thus far, have been transient. I have also had moments when I felt over caffeinated, like I was charged up and couldn't slow down. I developed panic attacks, went on a few different medications, and am finally at a point of acceptance and rationality. All of this led me to believe there was something other than RLS going on that may be causing everything.

Aside from obvious fatigue one would expect from lack of sleep, does anyone else get this? Same goes for muscle aches, random energy charges. I don't mean to keep prying, I just want to feel secure in the diagnosis pending EMG and Ferritin testing. I will continue reading the boards and looking for more info as well. Again, thanks to all who have posted!

[ViewsAskew]

From my perspective, don't worry about prying! We're here to help as best we can.

I can only speak for me. I have a very "classic" case of WED and PLMS. My symptoms are textbook, pretty much. What you are experiencing doesn't seem like traditional/classic WED. It's possible it's WED plus something else, but I don't think it's just WED.

We've had several members over the years who thought it was WED and it turned out to be something else. And, we've had some who had WED in addition to something else. The fasciculations are definitely not WED. We have had other people here talk about them. I honestly cannot remember if anyone ever found out what caused them. You can try a search on the term and see what you find.

[restless_twitcher]

Thanks Views.

I had the EMG yesterday and my neuro found no signs of neuropathy or neuromuscular disease. In other words, the test was clean. We were able to view a fasciculation in my left calf and his final diagnosis was BFS or Benign Fasciculation Syndrome. He told me to get the ferritin tested and follow up in 3 months.

It's just so strange as I know this isn't a typical case of WED but WED-like feelings were my first symptom. I'm going to keep chipping away until I get to some finality. I have been approaching this as a process of elimination so if, in the end, nothing can be done, I will just learn to cope like all of you have. I may seek the support of the folks over at aboutbfs as well.

Thanks again to everyone who contributed. This info and your support has been comforting and helpful in my search for an answer.

-Andrew

[Polar Bear]

You have a diagnosis of BFS and know that other tests are clean.
You may or may not have WED but if the WED-type-symptoms are ongoing then you need to work at getting some relief. Have your ferrritin serum checked asap and make sure to get the actual readings from the report, hopefully they will be up towards 100.

[badnights]

Hi restless
Anxiety and "panic attacks" are fairly common with WED. I had mild panic attacks a few years back, before the WED got bad, and I've been borderline depressed (or depressed, depending how you define it) most of my life. My son has serious anxiety issues and mild WED/RLS (so far mild). Anxiety or depression with WED is often a consequence of chronic sleep loss, but just as often at least, the anxiety or depression pre-dates the WED or is otherwise not due to sleep loss. As Ann said, they travel together.

Besides primary/idiopathic and secondary, WED can be divided into early onset and late onset. Early-onset WED (that begins in childhood) progresses at a slower rate; it is almost always primary and familial. Late-onset WED/RLS (that develops in adulthood) progresses rapidly, at least initially, and that might be what you're experiencing. It can be either primary or seconday, as I understand it.

What I find interesting is that your symptoms began after taking cold medicine. What brand, what type, what dose? Many cold meds contain first-generation anti-histamines, which exacerbate WED in people who already have it or trigger WED in (genetically susceptible) people who have not had it before. Generally, though, I would expect the WED symptoms to disappear once the medicine was no longer being taken. Look for anything you're still consuming that could be causing the symptoms. But maybe you had latent WED that was going to ramp up anyway, and you just gave it a kick-start with the cold meds.

I had ferritin of 28 micrograms/litre, was able to raise it over 100 by taking ferrous sulfate 2x325 mg/day. But I have to keep taking the iron. If I stop, the WED symptoms get worse within a week. I have not had my ferritin measured at those times, but I assume it was dropping. There is a documented correlation between low serum ferritin and WED severity (see links in my signature). Point being, you may be able to control your symptoms simply by taking oral iron supplements. Don't, whatever you do, take a dopamine agonist (pramipexole/Mirapex, ropinirole/Requip, or rotigotine/Neupro) when your ferritin is under 75, preferably not unless your ferritin is over 100. There is a strong association with augmentation (worsening of the WED) under those conditions.

EDIT added Dec 31

Aside from obvious fatigue one would expect from lack of sleep, does anyone else get this? Same goes for muscle aches, random energy charges.

I just realized I didn't answer this part. Fatigue is very common in WED, but ultimately attributed to sleep loss. Even when we think we're sleeping through the night, it's often very poor quality sleep and missing the deep components. Fatigue is a component of many other diseases too, though. Random energy charges like being caffeinated: yup, that's WED. Muscle aches: not WED.

[pkj]

I have had the diagnosis for several years and tried many things. I would recommend reading the meds that aggravate this disease, and I found that to be helpful. Especially, long term use of Requip. After several months of doctoring, ER visits, Mayo, and eliminating all meds except one for RLS, this ended up being the culprit. I will post under the Med usuage my experience as well. I researched requip and found many had the same symptoms, referred to as peculiar behavioral dyscontrol syndrome. Your body goes numb, muscles weaken and you can't walk, feel like the flu, often impairs speech. I would highly recommend researching long term use side effects of any meds they give you. I also feel excessive exercise can ascerbate the RLS at night.

Wishing you well, am now on Lyrica, seems to help.