Severe RLS, passing out from spasms

Brain and nerves
1

Hi, I'm new to this forum. I have several health issues, one I'm working on right now too hopefully resolve or get relief from is my RLS. I have been experiencing RLS symptoms most of my life, even as a child waking up with leg pains Etc. This past 2 years it has gotten very severe, I will wake up with my legs stretched so tight that they spasm. This can happen anywhere from 1 to 8 times a night. Every 6 weeks to 8 weeks I will have a spasm so severe that I passed out on my floor, and I have on a couple occasions even had incontinence. Hell of a way to wake up.

My arms are affected too sometimes, not as often but when they do decide to become involved, they will start straight up above my head over and over throughout the night. There are times I will just get up at 3 a.m. and call it a night.

I have an appointment coming up with a neurologist in about a week, my doctor has given me a temporary dose of clonazepam. A small dose, it seems to help with the spasms, I have still had a few. I do still tend to wake up, not as often and I'm able to go back to sleep really fast. I had tried mirapex, was up for 3 nights straight, had some other side effects, it definitely did not agree with me. I do have a low ferritin level, my doctor I have does not think that is an issue I'm hoping the neurologist will think differently. Everything I've read says that low ferritin can make restless leg worse.

This past month I tore my achilles tendon, I'm wondering if perhaps it is from having spasms that have tightened my calf muscles so much that it led to a tear. I don't know for sure, I walked on it for quite a while before I went in to get it checked, it just seemed like one more thing I did not want to deal with. I am now wearing a boot during the day, which helps extremely for the pain. I'm just wondering if the tear could be from having tight calf muscles from having spasms throughout the night.

Would really like other people's insight different medications they have used and things they have done for RLS. I have tried most of the standard things, tonic water, vinegar, cold and hot water, mustard, in pickle juice.

2

Hi Melanie

I am not sure that this is RLS    One of the key factors in identifying RLS is a strong desire to move the limbs and not spasms or cramps.   Most people here spend lots of night times walking around because its is too uncomfortable to stay lying down but not passing out and tearing tendons.    If your spasms are like cramps then this is not usual in RLS.

What is your ferritin level?   For RLS relief some medical experts say it might need to be around 300.   In Australia 500 is considered the top of the "normal" range, and by implication "safe", by one large pathology company.

I will send a list of things to try which you might discuss with your specialist.   Many people have found that both GPs and specialists have a low level of knowledge in the RLS area and they are restricted legally in what they can offer.      One of the things on the list is a link to the official symptoms to diagnose as RLS so you can see the differences between the official version and your symptoms.

I think the neurologist might diagnose something else.

Good Luck

Graham

3

I think graham is right, your symptoms are different than the typical RLS symptoms. Also the fact that you have had these symptoms since childhood is uncharacteristic of RLS. An achilles tendon tear can be caused by overstretched calf muscles. Do you drink sufficient amounts of water? Clonazepam is used to treat certain seizure disorders and panic attacks. Yes, iron levels are important in alleviating RLS to some extent. But 1st you need a neurological conformation that you indeed have RLS. Seems to me you need a full neurological workup.