Hi all. I’ve been suffering from this condition for more than 10 years now. At first I developed sudden habit of eye blinking and many more movements and habits. One that stuck with me is sudden WHOLE body jerk, which shows as if just got burned and jerked as a reaction. The jerk lasts for less than a second, its quick. And it happens 24/7 except when sleeping. I did so many tests and ended up diagnosed with tics. Another thing I’ve been experiencing (on and off) is HUGE urge to move my legs and feet or sometimes arms and hands, stretch them, squeeze them or scratch to feel comfortable. Sometimes I can feel some heat in feet, sometimes not. Massage also eases the feeling, moving as well. It’s a weird feeling, not in bones, not muscles, its like its in the blood, like it’s crawling, like sth is under my skin. But what I find odd the most, when it happens, squeezing my gentials (female) and peeing comforts me for a minute or two. I have been on so many meds. Nothing worked. I just want to know if anyone is experiencing the same. Maybe someone already figured a solution.
Thank you for reading.
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Tixmix
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Timix, I have had some of these and have largely removed them as a side benefit of many changes I have made.
The legs issue is often known as restless leg syndrome and you do feel the need to tense and release muscles. the sensation of feeling you blood is an immune reaction and is not unique to FM but it means your immune systems is reacting to something. You can also become aware of your heartbeat via swellings such as in the ear canal. One factor for me was slightly low thyroid function - now medicated.
My hunch with this it is an allergic reaction or food intolerance. A big suspect for me was Sulphite intolerance. Sulphites are natural in foods but are toxic. In moderate quantities our bodies deal with it but it is used as an approved food preservative - biscuits and cakes are riddled with it. Do some web browsing on sulphite intolerance - the US spells it Sulfite. I found as my general health improved I am less prone to Sulphites but they seem to have been my issue. Cheap wine and bottled beer should also be avoided they are mega loaded with sulphite. Have you ever had a three day headache after cheap (white) wine in particular?
If you have that is the sulphite not the alcohol. More people have this problem than know it and often blame a hangover on drinking too much when it is sulphites. A characteristic of this type of poisoning is figetty legs, pain under the eyebrow and back of the nose with a dry mouth often you lips or tongue will tingle within minutes of of the intake. I have also learned never to drink the first pint out of a barrel in a pub. Beer-line cleaner is very strong sulphites - it can cause me pain and restlessness for three days. Your kidneys can also feel sore it is they which are not taking away the sulphite excess. Anything to improve kidney function will help and drinking more water may be all you need.
I think they sound like "ticks" that you can get from Tourettes syndrome. They are like physical part of Tourettes as opposed to the verbal type. Unusual Blinking is often a tick. I also had a friend with Tourettes that would do these body gyrations as part of his Tourettes. Maybe if you Google it you might find something that chimes with your experience? Other than that it does sound familiar with restless leg, but I think the blinking suggests it is something else.
Try magnesium supplements I find this stops my legs from twitching etc. I often get jeans in limbs but mine more at night. I get itching but this is due to my menopause and hormones more than anything.
I often have an urge to move, if I've sat too long or at night, sometimes coming from the lumbar region, sometimes undefined. Occasionally it's overwhelming & yucky, sometimes I want to run away from my body, but usually movement will help after a while. In my case enough position-breaks and exercises help prevent it. I can relate to the squee(z)ing too. But I'm not sure what it is. Yours sounds worse and different tho.
I've learnt now that I can alleviate any urges like this or ache or pains by a 1 min. ice cold shower, that'd be my main suggestion. Even at night.
Twice sleep lab showed *no restless legs, my thyroid is OK (but needs regular checking). I've had to change my diet a lot due to intolerances and now cardiovascular issues. But in my case it's nothing to do with that or sulphite, I only eat natural organic stuff and never drink alcohol. Drinking more doesn't help me (2 litres+), but I'm getting my kidneys checked thru to be on the safe side, because of occasional proteinuria, which might just come from drinking too little on testing days.
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