Does this sound familiar?

So I am not sure if what I have is RLS....

I get this sensation that I can only liken to pressure/fizzing sensation/ build up in my leg (mainly right but occasionally left) that I have to release with a massive leg twitch/jerk/spasm, sometime multiple spasms, if i try to hold it in the fizzing just gets worse

This only happens in the evening when I lie on the couch,or in bed, the last few nights I have lost sleep due to the twitching Seems to be starting when I am sitting at my desk as well.

it does not sound like the symptoms of RLS but I thought I would see if anyone could shed any light as it drives me insane and I have googled the crap out of it and cant find anything similar.

Also i have terrible hip and leg pain during the day - could this be related?

Thank you in advance!

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10 Replies

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  • Thanks for your reply Pippins x

    It only feels better after a massive jerk or two. I can move them around but the buzzing still builds up, which makes me think that it is not RLS!

  • Good morning Kiwi

    I am sorry to read about your symptoms. RLS can really affect one's life.

    This link may help you to decide if you have RLS or not:

    rls-uk.org/faqs/4568109901

    Do keep in touch and let us know how you go on.

    Kaarina

  • I think that it is rls. You are describing what I told my doctor. It

    builds over an hour with me (I can feel it coming on) and then

    suddenly my legs have to jerk or I must get up to let them

    relieve themselves. I feel the fizzy or the buzzing in my legs

    very often. I do hope that you tell me it's not like mine.

  • I don't think it sounds like RLS. It is difficult to say. Are you twitching your legs to relieve the leg issues? With my RLS, happens mostly at night -I get a creepy crawly feeling in my legs. I cannot relieve it if I sit still. I MUST get up walk around do a dance, anything that involves leg movement to try to help relieve the RLS. Sometimes it works quickly, sometimes it lasts hours which is torture. I take meds for RLS but they don't always work unfortunately. Perhaps you should see a neurologist that is familiar with RLS. Hope you feel better real soon.

  • I have just found out about the details of this syndrome which I have had for many years without any support from my GP:;the conclusion being that it was neurological and therefore a mental state. However, it is worse in the evening and at night. My main problem is intense burning sensation-around the ankles and numbness in the feet although the right leg has a stabbing pain through the thigh making it difficult to stand up. I usually try to focus. on some pleasant memory experienced during the day which or in the past-- difficult but it pulls me through especially when my sleep is broken./..

  • Are you sure you don't have a mix of rls and neuropathy?

  • Sounds like a combination of both to me. I have both. Maybe see a neurologist.

  • Yes, RLS is neurological but not a mental state, that is so wrong..!! Do you have the urge to move you leg or legs..??

  • Hi Kiwi1,

    I'm sorry that you are experiencing this problem. Your sensation sounds very much like mine, but bear in mind the information on the internet can only use what is given to it. I felt disappointed that I couldn't do a self-diagnosis because no-one used the terms I felt (i.e., I didn't have sensations like insects crawling up my legs,nor did it affect both legs at the same time. Also, the jerk may not relieve the sensation for very long. I chatted with the pharmacist at the local pharmacy and he was helpful, then I went to my GP who identified it as RLS. She wasn't much help, saying she could only prescribe anti-parkinson drugs, so I should go home and explore any alternative ways of "treating" it.

    Several people suggest trying taking Magnesium tablets so I got some from the chemist. They didn't work. Recently I went to a department store to shop for something completely unrelated and while talking to the shop assistant the conversation got around to RLS. She said she had seen some good results with Magnesium and for once she asked when I had tried the Magnesium, and what dosage. Apparently I needed a larger dose (500-1000mg). I hadn't even been taking the minimum dose in the tablets I had used so I'm going to get some with a higher dose and try them.

    I also find the sensations don't occur when I'm standing or walking around, so I might try a gym ball I can sit on so my legs get some exercise, however small, while I'm reading or watching the television.

    I would advise you discussing the problem with the doctor to get a definite diagnosis and if you don't get any constructive advice as to treatment ask the pharmacist at the chemist.

    Sorry I'm so long-winded!

    Nurse-14

  • Similar symptoms (feels like energy builds in my legs to the point when I MUST kick my legs or jackknife my knees - and if trapped in airplane or theater, my arms join in). Thankfully, no pain (does that disqualify RLS?). But good news: After NO jerking or kicking legs for more than two months following my total knee replacement, I realized the difference was the magnesium drink I consumed to counter the constipating effect of the narcotics. Before making that connection, I stopping that magnesium (a rounded tsp of Natural Calm - magnesium citrate in 8oz H2O), and the need to kick or jackknife a knee reappeared. I'm starting it again and am combining it with a thin seating wedge. [A bit more re magnesium in 3rd paragraph].

    Because sitting on my tailbone is the instigator for me, I bought Seat Solution, a thin wedge with an opening hole for the tailbone (coccyx). I forgot to take my wedge before we drove to Colorado from Kansas City last week. After an hour of driving, I stated kicking the floorboards; my husband had to take over while I sat sideways to keep pressure off my keister. I bought a duplicate wedge in Colorado, and drove six hours without a problem. It is called Seat Solution and is available for around $20 at Bed Bath and Beyond. I'm taking it with me for a full day of flights to Vancouver and back (and will buy one for my car and mu husband's so I'll always have on with me.)

    For years, I took a magnesium oxide gelcap with my calcium at bedtime to aid absorption of my calcium supplement (no knowledge of possible RLS relief). One knee or the other still jackknifed after 15 minutes of reading in bed. I don't believe the magnesium had enough time to take effect before getting into bed. After realizing the magnesium connection last month, I took the gelcap at least an hour before bedtime, and that seemed to help, but not 100%. I just read that magnesium citrate is reportedly better absorbed compared to the oxide formula (www.ConsumerLab.com is a great resource). Magnesium glycinate (also referenced at ConsumerLab) is a topic in another thread (think I'll copy this response there.) I have to figure out dosing so I can attend symphonies and plays, drive long distances and fly for hours (one of the worst), without creating additional bathroom stops or intestinal dependence.

    Good luck!

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