Atypical symptoms and lots of diagnoses to untangle

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Jumpingoutofmyskin
Posts: 2
Joined: Tue Jun 23, 2015 12:35 am

Atypical symptoms and lots of diagnoses to untangle

Post by Jumpingoutofmyskin »

I'm a woman in my twenties, and experience an insatiable urge to flex the balls of my feet, contract my thigh and calf muscles, as well as my buttocks. It is near impossible for me to sit down and read/write without making a fool out of myself and rhythmically bending my feet or waving my legs in the air, in order to ease the crawling sensation. Before the restlessness in my legs developed, I actually had restlessness in my hands. This started at the age of three when my parents noticed that I always needed to be rubbing my hands or vigorously fidgeting with an object. Wherever I went I would leave a trail of destruction--pens, markers, sticks, and any object in my path would break as a result of my hyperkinetic hands which always needed to be bending or twisting. This actually lead to a lot of problems once I started working, with an employer formally disciplining me for broken writing implements. To this day, I have calluses on my hands from the incessant rubbing.

Here's where things get a bit confusing: I don't have any problems falling asleep. In fact, I have an issue with excessive sleeping. I may be on my laptop reading an article around 2 in the afternoon and all of a sudden I will find that it is 4 pm and I fell asleep on top of my computer. My sleep attacks have really impaired my ability to lead an independent life, and I'm having a really hard time completing my degree because I simply can't stay awake to do my schoolwork. I have depression which leaves me constantly fatigued, but even during non-depressive periods I still find myself randomly falling asleep in the middle of the day. I investigated the possibility of narcolepsy but the symptoms don't quite match: I don't fall asleep in the middle of conversations, while walking, or while eating. There seems to be a pattern to my sleep attacks: I start off very alert, violently twisting my legs and clenching my muscles, but at a certain point I become dead exhausted from all of the movement. It is when I am still that I become dead exhausted and fall asleep. In other words, I am not tired so long as I can keep moving, but the moment I stop moving I often get overcome by fatigue. My body craves stimulation and so long as I am moving I have boundless energy, but at a certain point I can no longer sustain the motion and I just crash.

Over the years I've collected a variety of diagnoses due to physical, cognitive, and psychiatric issues. Nothing quite seems to explain the issue with my restless limbs. I was diagnosed with ADHD, and while I have lots of memory issues and am famously airheaded, I have a level of restlessness that can't be explained my an ADHD diagnosis alone. ADHD medications do nothing to help my endless urge to move. I also was diagnosed with mild autism. Though people with autism are known for repetitive movements (stereotypies, more colloquially known as "stims"), my movement issues don't quite match the definition of stereotypies. Stereotypies are voluntary, and at least according to the literature I have found, suppressing autistic stereotypies doesn't cause any tension or pain. Unlike tics, they aren't typically caused by a premonitory urge (and the Tourette's idea of a premonitory urge resonates with my experience). I do wonder sometimes if I have a variant of Tourette's, but I hear that tics tend to occur randomly and my movements tend to be cyclical and rhythmic, more in line with autism. This leads me back to the possibility of them being a manifestation of autism, but while I rock back and forth--typical among autistics--- a lot I still don't know how to explain the crawling sensation in my limbs. My doctors have considered the possibility of hypomania, and while I do think I experienced hypomanic periods in my life, the leg issue is something that happens every single day (and it isn't necessarily linked to euphoria for me....it happens when I am very depressed as well). I always have been a person that needs constant stimulation, which is why I have a problem with overeating and excessive chatter--whether it meets the criteria for hypomania, I'm not sure. The bottom line is that I have a mishmash of diagnoses, but other people with these issues don't have the unbearable restlessness and incessant need to flex their muscles. I will note that I have a lot of other problems like hypotonia and poor coordination. Not sure if these are related to the sensations in my limbs, but I figured I would mention them.

Does anyone have any idea what is going on here? Is it possible to have RLS in the legs AND the hands? Anybody else have issues with excessive sleepiness rather than insomnia? I'm also curious to hear from other people on this forum who have RLS and a mental health condition or a devevlopmental disability.

ViewsAskew
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Re: Atypical symptoms and lots of diagnoses to untangle

Post by ViewsAskew »

It is possible to have RLS - also called Willis-Ekbom Disease - in your hands. In most body parts, really.

But I'm not sure you'd match all the requirements for RLS. The urge to move is clear. But RLS follows a circadian rhythm. It's always worst in the evening. Yours doesn't do that.

I can imagine that you've been through hell and back trying to get this figured out! I don't know much about it - have you research akathisia? I hope I'm spelling it correctly. It's one of the disorders mentioned re. differential diagnosis for RLS.

In terms of being on the spectrum, I wonder if we really know if the movements are always voluntary. I imagine some are - it's very soothing to do. But depending on where a person is on the spectrum, they might not be able to communicate if any sensation accompanies it. And, in terms of RLS/WED, they've identified 6 genes, if I remember correctly, so who knows what happens when these get combined. I'm positive there are variants of it. So, it's not to say it's not RLS, but it's not likely RLS as currently defined.

Tourettes, RLS, and other movement disorders have something in common - dopamine. So does ADHD. Clearly, any depression is typified by issues within the brain's chemistry - even though we don't understand how quite yet. Have you ever tried any drugs that increase dopamine? I wonder what would happen.

Research indicates that people with RLS is several times more likely than others to have depression and many times more likely to have anxiety issues. We have 4 generations of folks with RLS on my mom's side and almost all of us have issues with depression.

Oh, poor coordination, I believe, is relatively common to those who are on the spectrum. Hypertonia affects about 30%. (I have close family members on the spectrum, along with OCD and Tourettes.)
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.

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: Atypical symptoms and lots of diagnoses to untangle

Post by sleepdancer2 »

I'm sure you are frustrated and weary from all this. Is there any chance you're on meds that could actually worsen your symptoms? Also wondering if you've had a sleep study? Daytime sleepiness can be a sign that nighttime sleep is not of good quality. Even if your daytime movement issues don't prevent you from sleeping at night, something else could be disturbing your sleep and causing at least some of your symptoms. Hopefully you are under the care of a good neurologist, even better if they are a movement disorder specialist. It's hard when symptoms don't quite "fit" any list. Sometimes there's more than one problem at play and the more things you can rule out or rule in and treat, it's likely the picture will become clearer.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Bess
Posts: 21
Joined: Tue Jun 09, 2015 9:08 pm

Re: Atypical symptoms and lots of diagnoses to untangle

Post by Bess »

Sounds very much like you have a neurological condition. Although I sometimes get the typical RLS symptoms (like last night, ugh) I also go through phases where I'll get RLS symptoms during the day, inexplicable daytime fatigue even if I've been sleeping well, and I also get the sensation in my arms and torso and face. I usually get extreme ADD symptoms during these times too. Adderall works wonders for me for these symptoms. Have you tried?

I agree that it's possible you are getting poor quality sleep, and you should definitely be seeing a neurologist.

Jumpingoutofmyskin
Posts: 2
Joined: Tue Jun 23, 2015 12:35 am

Re: Atypical symptoms and lots of diagnoses to untangle

Post by Jumpingoutofmyskin »

Thanks everyone for your input. It's great to hear I'm not alone! In regards to neurologist care, I have had an incredibly hard time finding a neurologist who is willing to investigate what's going on. Most of them seem to only have a knowledge of general neurology, and since I don't have a common condition like MS or epilepsy they haven't been of much assistance. Do you think a movement disorder specialist would be my best bet, or is there another type of specialty neurologist I should try? Sometimes I wonder if I may have some sort of mitochondrial disease or something along those lines, or perhaps some sort of mild genetic deletion. I am not sure what kind of professional to seek out for the assessment of these issues

Typically when neurologists hear that I have psychological issues, they just hand me off to a psychiatrist. I already receive psychiatric treatment but this has not resolved my coordination, muscle tone, and restless limb symptoms. If anyone is in the Philadelphia area, recommendations for good neurologists would be very helpful :)

In regards to medications, I've never tried dopamine agonists though I have taken medications which affect the dopamine system to control my ADHD such as Adderall and Concerta. I don't know a ton about the dopamine system, but is there a connection between RLS and ADHD since they both involve dopamine? I'm curious about their relationship, but a bit confused since dopamine agents are prescribed for ADHD but agonists are for RLS. Sorry if I'm not making much sense--I wish I knew more about the underlying mechanisms of RLS and ADHD.

Rustsmith
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Re: Atypical symptoms and lots of diagnoses to untangle

Post by Rustsmith »

Jumping, just a quick note responding to your question about specialists. Yes, a neurologist who specializes in movement disorders is more likely to be knowledgeable about RLS/WED than the generalist neuro's that you have been seeing. Even if their practice deals mostly with Parkinson's, there are enough similarities in the two diseases that they will at least have an idea of what you are talking about when you discuss symptoms. The one word of warning is not to let them get you into Parkinson's level DA drugs since we do not take as much of them as they do and getting off of DAs is hard, especially when you start from high levels.
As for your other questions, I can reply to them tomorrow morning if someone else has not addressed them before me.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Atypical symptoms and lots of diagnoses to untangle

Post by ViewsAskew »

Do some research on akathesia - it may seem familiar to you. If not, you're still looking. If it does, you may have someplace to begin.
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.

Rustsmith
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Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Atypical symptoms and lots of diagnoses to untangle

Post by Rustsmith »

Jumping, as promised here is some information. I have been looking into RLS genetics over the last couple of days. There is one gene that has been identified with RLS, PTPRD, that has also been associated with ADHD. I cannot say that there is any sort of relationship, but if you search the discussion group for ADHD you will find a number of mentions.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

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