atypical RLS perhaps? Getting worse, off and on...
Posted: Fri Jun 12, 2015 3:41 am
I can feel in my legs right at this moment. It's a weird "light" feeling? I don't know.... My legs just feel weird. I've been trying to describe this to people for so long... the best way I can describe it is feeling like you've been driving in small clown car for 12 hours and you think to yourself "my god I need to stretch my legs" but then when you finally get some space and have the opportunity to do it you find that no matter how much you stretch them that feeling of desperately needing to stretch them doesn't go away. You feel like in order to stretch them enough you would have to rip your leg apart. This seems to get the idea across to people that although it isn't pain, it is quite, quite uncomfortable.
For those with scientific minds who don't want to read through all the prose, here are the quick facts of my situation:
- 29 yo female
- RLS is episodic and seems so unpredictable. Sometimes I only get it for one day a month, other months (like this one, it's almost every day)
- symptoms are worse mid-cycle (ovulation) and just before my period.
- symptoms are worse in the summer
- symptoms were worse when pregnant
- I often get daytime symptoms (had it right upon waking up this morning in fact). My roommates and coworkers have seen me stomping my feet on the ground incessantly in attempt to get relief.
- Sometimes I get daytime symptoms but no problems at night. Sometimes it's only a problem at night, but not in the day. It's very unpredictable.
- when it's really bad I get the feeling all over my body, even my face
Co-occuring symptoms:
- mild PGAD (especially this recent episode)
- EXCESSIVE daytime sleepiness, even with lots and lots of sleep. In fact, more likely perhaps when I've had lots of sleep. It usually sets in the early afternoon and it feels like I've been drugged with sleeping pills, it is so intense. I take adderall to combat it, coffee is useless for it. Usually happens in the summer. Used to call it my "summer syndrome" and it always had the doctors baffled. For awhile I thought it was low blood pressure..
- ADD, almost always when I'm also experiencing the daytime fatigue. Sometimes the ADD is so severe it is unsafe to drive because I zone out. Adderall works.
- Muscle weakness
- Insomnia. I swear on my grave the insomnia is not just a factor of the discomfort in my legs, it's a co-occurring phenomenon. Oftentimes I'll have the insomnia before the feeling in my legs starts creeping in on me. Sometimes I have the RLS but no insomnia at all and I sleep just fine.
Things I've tried:
Melatonin - works for mild symptoms, sometimes
Magnesium - works well for mild symptoms
Iron - thought it worked, but that may've been a coincidence because now it's not working
Orgasm - definitely makes it worse. This is consistent with what I've read about PGAD in any case.
Sleeping on the floor - works often when nothing else will
Valium - the only thing I can say works every time. Unfortunately though, I can only take for 3 nights in a row before it loses its effectiveness, so it's only good for emergencies.
Adderall - this definitely works for the ADD (duh) and the fatigue (duh) and actually can diminish the feeling in my legs but the dosage I need in order to do that gives me side effects I don't like
Diet - I've noticed no correlation with RLS and my diet. My mom and her mom both have/had gluten sensitivities and my sister has a dairy sensitivity so I might try giving up one or both of those. Although I'll be honest, I don't want to live in a world where I can't eat dairy.
Exercise - I've exercised the crap out of my legs. My legs are now quite strong, and not even just for a woman's. It has never helped. If I try to exercise while I have symptoms I feel like I can't push the limits of my muscles because they aren't getting the right signals or something. I can't push the limits of my cardio fitness because it's like my body is unable to properly cool itself down. HOWEVER, I have definitely noticed that I am less likely to go into an episode of RLS if I manage to get myself really super-fit shape during those weeks/months when I'm feeling normal.
Experience with doctors:
A psychiatrist prescribed the adderall for the ADD/fatigue, a PCP and recently a psychiatrist prescribed the valium for sleep. I tried to get my PCP to refer me to a neurologist but she refused! She had me get all these tests (iron and such) which came out normal, talked to the neurologists (this is Kaiser so she can do that) and they said to prescribe one of the older Parkinson's drugs that gets bad reviews due to its causing fatigue and augmentation. I said it wouldn't be appropriate for me since one of my major concerns was the daytime symptoms and co-occuring fatigue and said I wanted that Neupro patch but she ignored me and said to try the other one first. Of course I didn't, and that's the last I've heard of that. I think Kaiser just doesn't have enough neurologists on staff to worry about silly RLS patients. I finally called Johns Hopkins today and will be getting in on a clinical trial they're doing this summer. Call them up, 300 bucks! And they pay for travel!
For those with scientific minds who don't want to read through all the prose, here are the quick facts of my situation:
- 29 yo female
- RLS is episodic and seems so unpredictable. Sometimes I only get it for one day a month, other months (like this one, it's almost every day)
- symptoms are worse mid-cycle (ovulation) and just before my period.
- symptoms are worse in the summer
- symptoms were worse when pregnant
- I often get daytime symptoms (had it right upon waking up this morning in fact). My roommates and coworkers have seen me stomping my feet on the ground incessantly in attempt to get relief.
- Sometimes I get daytime symptoms but no problems at night. Sometimes it's only a problem at night, but not in the day. It's very unpredictable.
- when it's really bad I get the feeling all over my body, even my face
Co-occuring symptoms:
- mild PGAD (especially this recent episode)
- EXCESSIVE daytime sleepiness, even with lots and lots of sleep. In fact, more likely perhaps when I've had lots of sleep. It usually sets in the early afternoon and it feels like I've been drugged with sleeping pills, it is so intense. I take adderall to combat it, coffee is useless for it. Usually happens in the summer. Used to call it my "summer syndrome" and it always had the doctors baffled. For awhile I thought it was low blood pressure..
- ADD, almost always when I'm also experiencing the daytime fatigue. Sometimes the ADD is so severe it is unsafe to drive because I zone out. Adderall works.
- Muscle weakness
- Insomnia. I swear on my grave the insomnia is not just a factor of the discomfort in my legs, it's a co-occurring phenomenon. Oftentimes I'll have the insomnia before the feeling in my legs starts creeping in on me. Sometimes I have the RLS but no insomnia at all and I sleep just fine.
Things I've tried:
Melatonin - works for mild symptoms, sometimes
Magnesium - works well for mild symptoms
Iron - thought it worked, but that may've been a coincidence because now it's not working
Orgasm - definitely makes it worse. This is consistent with what I've read about PGAD in any case.
Sleeping on the floor - works often when nothing else will
Valium - the only thing I can say works every time. Unfortunately though, I can only take for 3 nights in a row before it loses its effectiveness, so it's only good for emergencies.
Adderall - this definitely works for the ADD (duh) and the fatigue (duh) and actually can diminish the feeling in my legs but the dosage I need in order to do that gives me side effects I don't like
Diet - I've noticed no correlation with RLS and my diet. My mom and her mom both have/had gluten sensitivities and my sister has a dairy sensitivity so I might try giving up one or both of those. Although I'll be honest, I don't want to live in a world where I can't eat dairy.
Exercise - I've exercised the crap out of my legs. My legs are now quite strong, and not even just for a woman's. It has never helped. If I try to exercise while I have symptoms I feel like I can't push the limits of my muscles because they aren't getting the right signals or something. I can't push the limits of my cardio fitness because it's like my body is unable to properly cool itself down. HOWEVER, I have definitely noticed that I am less likely to go into an episode of RLS if I manage to get myself really super-fit shape during those weeks/months when I'm feeling normal.
Experience with doctors:
A psychiatrist prescribed the adderall for the ADD/fatigue, a PCP and recently a psychiatrist prescribed the valium for sleep. I tried to get my PCP to refer me to a neurologist but she refused! She had me get all these tests (iron and such) which came out normal, talked to the neurologists (this is Kaiser so she can do that) and they said to prescribe one of the older Parkinson's drugs that gets bad reviews due to its causing fatigue and augmentation. I said it wouldn't be appropriate for me since one of my major concerns was the daytime symptoms and co-occuring fatigue and said I wanted that Neupro patch but she ignored me and said to try the other one first. Of course I didn't, and that's the last I've heard of that. I think Kaiser just doesn't have enough neurologists on staff to worry about silly RLS patients. I finally called Johns Hopkins today and will be getting in on a clinical trial they're doing this summer. Call them up, 300 bucks! And they pay for travel!