Restless Legs Syndrome (RLS) Discussion Board

I'm trying to get a diagnosis for a wide range of symptoms, including something that's RLS-like. When I had three months of restless leg sensations last year, the one thing that made me think it wasn't RLS was that the pain went completely away while I was sleeping. The odd thing is that I have many other symptoms, and the more I document and analyze them, the more I realize that they also go away, either completely or mostly, while I am sleeping. This is certainly unusual and it is not a characteristic of any of the diagnoses that I've received. If this rings a bell with any of you, please let me know, no matter how off the wall it might seem. Doing a Google search for <diseases that get better at night> has been a huge waste of time so far.

SnappyK - Are you speaking specifically about RLS symptoms or about various other unknown symptoms.
You're correct, it's not a characteristic of RLS.

We really don't feel pain/symptoms whilst we are asleep.
Perhaps you can clarify exactly how the symptoms behave at night.
Do you mean that your symptoms don't wake you up at night?
Or that they don't appear at night/evening time and don't hinder you trying to go to sleep.

I wonder if you searched regarding when your symptoms actually appear as opposed to when they 'don't appear'.
Just a thought.

Sorry, I wasn't clear. My symptoms (pain etc) get somewhat better when I lay down to go to sleep. (I could sleep through the end of the world, so falling asleep is not a problem for me no matter what.) If I wake up in the middle of the night, the pain I had when I went to sleep is gone. When I wake up in the morning and get out of bed, my pain is either completely gone or I have just a small amount of pain in my feet. Everything else feels fine. Most medical issues seem to worsen at night, not get better, so it strikes me that this is really important and something I need to look more into.

I just came across POTS on another site and am thinking it might explain what is going on. When I sleep, things are calm. Once I get out of bed, I am rapidly draining my energy and aggravating my symptoms. This would explain why my blood pressure keeps jumping all over the place, why my heart races sometimes, and why I get out of breath sometimes. POTS patients often have small fiber neuropathy, and some POTS patients report having RLS. So now I'm wondering if I have something like POTS that tends to lessen while I am asleep, and that's why I had RLS that went away every night.

Some of the main criteria for RLS is for it to be worse at night and the urge to move and you make no mention of these.
That immediately red flags to me a question over a diagnosis of RLS.

Never having heard of POTS I did a google search and found this:
"""Postural tachycardia syndrome (PoTS) is an abnormality of functioning of the autonomic (involuntary) nervous system. It is defi ned as an increase in heart rate of over 30 beats per minute (or to higher than 120 beats per minute) (40 bpm in those age 12-19) when standing upright. Typically there is no postural fall in blood pressure, although fainting (syncope) can occur.""""
Know nothing about it, I can't comment.
Your doctor would be best for reassurance/diagnosis.

However, Dr Google is pretty thorough and can find a 'diagnosis' for everything/anything which can be both good and bad.
In my own case if I check a symptom a fatal disease nearly always somewhere appears on the list.
My own GP has been known to say as I leave his office - ""don't Google - and if you must then take it all with a pinch of salt""".
Of course, many of us still have an internet/Google search. That's how most of us will have found this Discussion Board in the first place.

Perhaps others will have heard of POTS.

Thanks for your response, Polar Bear. When I had the RLS-like symptoms last year, I had strong urges to move whenever those sensations were present. I have weaker urges to move my feet now when the pain occurs, but nowhere near as compelling as last year. In no way do I think I currently have RLS, but I am still wondering if last year's episodes were RLS. I know that it's supposed to be worse at night, but other symptoms also disappear for me at night, so perhaps whatever was triggering the RLS for me was being alleviated at night to the point where the RLS dissipated. I know this is an odd presentation; I can't find anything that seems to work this way. Even POTS is posture related, and my changes don't come from laying down, but specifically from sleeping, even in an upright position.

I am doing a lot of research myself because the neurologists have given up trying to find an underlying cause, labeling my neuropathy "idiopathic". My GP is doing what she can to help but she doesn't have the time to devote to research. I am waiting for a consultation at Johns Hopkins but that may be several weeks or months away, so in the meantime I'm grasping at straws. I am still fighting off the lung infection I got two weeks ago when I aspirated on a drink because my swallowing is being affected. I'm finally getting better, but next time it may be pneumonia, or next time I might choke to death. Scares the hell out of me. I had a barium swallow test yesterday so I am hoping it will help pinpoint the source of my swallowing issues, and that may give us a different diagnostic direction to go in.

I'm sorry that your various neurologists have to date been unable to help you and wish you well in your tests and in particular your consultation at John Hopkins.

Thanks, Polar Bear. My case was accepted by Johns Hopkins and I see one of their neurologists in July. In the meantime I am seeing a rheumatologist and other doctors to try to find an underlying cause for my symptoms that would explain why my symptoms get better at night. All my recent tests came back negative, so it's not POTS. I've done lots of Google searches for disorders with similar symptoms that get better at night, and I've found nothing compelling so far.