RLS all over

[Sleepscared]

Reading these comments makes me want to jump out of bed right now. I am having such a bad episode all over my body going on 3 nights now. No sleep, jerking, twitching, shooting limbs, cursing, constant throbbing. Explosions every two minutes resulting in a major jerk or sometimes I feel like a fish out of water just flapping around. @nightdancer your screen name alone made me almost cry. It’s like an insane nightly death dance. My dr only prescribed sleep meds. I need a new doctor and will try some of the recommendations you have suggested. I’m just relieved in a strange way to see I’m not going crazy. This pain, condition, whatever it is, it’s ruining my life right now. I am wondering if I can make any immediate dietary changes that may help?

[involuntarydancer]

Your situation sounds really bad. Check the list (on Earls website) of counter-indicated substances to be sure you’re not taking something that is worsening symptoms. Get your GP to do a serum ferritin test and if your level is less than 100 (make sure to get the actual figure) start a supplement. Raising iron levels can be very helpful.

There are all sorts of tips on here for temporary relief at night - a magnesium rub, cold water to the legs, yoga stretches, a small cup of coffee etc.

Make sure you do a LOT of research yourself before taking any medication prescribed by a doctor - even a neurologist - particularly if it is in the dopamine agonist group. Many medical practitioners are surprisingly uninformed about this condition and it’s treatments and can inadvertently do a lot of harm.

I find that sleep meds make everything worse if the underlying rls is untreated as they just cause additional dopiness and distress as you thrash around the bed or pace the floors.

Good luck. I hope you find some relief.

[Sleepscared in reply to involuntarydancer]

Thank you so much for your thoughtful response, taking your advice and getting a serum ferritin test first. For a long time my mom has mentioned my iron levels may be low (for other reasons too). I agree with you on the sleep meds, plus I have two small children and I’m just apprehensive about not being able to be alert if they need me in the middle of the night as toddlers do. Will not be taking the ambien, will try the magnesium rub tonight. Thank you so much.

[involuntarydancer in reply to Sleepscared]

It's so difficult managing rls with small children. Apart from everything else there is the ever present danger of stepping on pieces of lego left lying around when up pacing the floors with rls.

[AnonPDX in reply to involuntarydancer]

Lol yup

[Rocket56]

Have you tried 0.50 mg of Sifrol? However! it must and I stress must be taken 3 hours before going to bed, I’ve been on this medication for about 6 months now and find it works well, the reason I highlighted 3 hours before going to bed is because I have missed the 3 hours time slot in taking it a couple of times and had hardly any sleep at all.

Good luck and sweet dreams.

[involuntarydancer in reply to Rocket56]

Another ‘must’ with Sifrol is to avoid increasing the dose above 0.5mg (even if your doctor recommends it). Increasing further will lead to worsened symptoms and much suffering down the line. If symptoms start to break through it is much better to supplement with a drug from a different category such as gabapentin or an opioid.

For most, it is also important to ensure iron levels (serum ferritin) are high - like over 100 - while taking this drug (this is generally the case though we are all different with this disease and I see in Rocket’s case this is not an issue as he/she is one of the unusual sufferers who has inordinately high iron levels). Treated with respect it may afford relief for some time to come but it can cause a lot of problems otherwise.

[Sleepscared in reply to involuntarydancer]

Thank you, will note this.

[Sleepscared in reply to Rocket56]

Thank you, looking into this right now!

[Eryl]

I, and some others have found that sugar and refined carbs are a trigger, so cut out all sweetened foods like soft drinks and desserts, chocolate, chutneys.

You may be sensitive to some artificial food additive, but it may take along time to find what. If the diet improves things, it will be easier to spot the culprit. Mine is potassium sorbate (e202).

[Sleepscared in reply to Eryl]

This may be my issue completely. I’m underweight and a busy mom to two toddlers so my diet is sporadic and sometimes nonexistent. At night right before bed I’ll get a sweet craving and eat a handful of cookies or a chocolate bar, or a piece of cake - always very sugary and often full of carbs. I sometimes chase it down with a sprite (I’ll do it during the day often too instead of actually eating a meal). It’s a bit embarrassing as I’m writing this out but this may be contributing significantly. THANK you!

[Eryl in reply to Sleepscared]

You may find that increasing your protein intake will keep hunger away longer.

[JakeRLS in reply to Sleepscared]

I love those night time snacks, but they drive my legs crazy, and usually within 10 minutes or so. Grudgingly (and with the howls of an addict) I gave them up, and it's made a big difference. Good luck to you.

[lauraflora in reply to Sleepscared]

You could try taking about 500 mcg. of chromium picolinate once or twice a day. (Google chromium for sugar cravings.) It will cut way down on your craving for sugar and sweets, and then you can concentrate on eating healthy foods - such as more protein foods as was advised by someone in a post above. And do look at my post below that goes into foods or additives that contain high amounts of glutamate which contributes to RLS and sleeplessness, so you can avoid or cut them out of your diet.

[lauraflora]

Here's something you should read about RLS. At hopkinsmedicine.org The article is on Restless Legs Syndrome, Insomnia and Brain Chemistry: A Tangled Mystery Solved. Among other info, it talks about glutamate - an excitatory neurotransmitter (which is also found in many foods.) And Gaba, which is calming.

Which leads to another article you should look at holistichelp.net/blog/how-t... This one, bear with its scholarly explanation, goes into Gaba (an inhibitory neurotransmitter) and glutamate (that excitatory one,) which we need some of, but too much causes all sort of problems. Anyway, toward the end of the article, the author tells about many foods, etc., that contain glutamate, so you can look to avoid them. For instance, beyond additives like monosodium glutamate, there are things like mushrooms, parmesan cheese, aged cheese, bone broth. I find that mushrooms do not bother me, parmesan cheese in a small quantity is OK, but if too much or two days in a row - it does bother me. Aged cheeses bother, but regular cheeses do not.

Also, why some people have various problems with glutamate conversion to gaba, etc.

So, I am hoping this info might be helpful to you.

[JakeRLS in reply to lauraflora]

Thanks. I had added bone broth to beef stew and my legs noticed. I didn't know what happened until I read your comments.

[lauraflora in reply to JakeRLS]

You are welcome. It seems to be rather sad to have to restrict various things to eat, tho there are alternatives. But I guess it is no different than being lactose intolerant, or caffeine intolerant, or allergic, etc. One just has to work around it all.

[JakeRLS in reply to lauraflora]

I can give up the bone broth, it's the cake I mind

[lauraflora in reply to JakeRLS]

I liked bone broth - rather too much when I first tried it out - sort of like a craving for it. However, it was only during one week. It kept me wired and awake at night, and then I read that it is high in glutamate. So, after I came down (it takes awhile to get the glutamate out of one's system, which is what happens as the body has a hard time processing it,) I have never had any bone broth again.

BUT, I will say that wine (tho not on the list of the article) never bothers me - altho it does some people. One DOES have to have some pleasure in Life.

[bauerannec]

Hi,

It may sound a bit odd but I also feel better finding out that I'm not the only person dealing with RLS, and in my case it's RTS(restless toes syndrome). I had RLS in my legs when I was a teenager, I remember doing riding bicycles in my bed at night.NOW it's RTS,and I do believe that it's more irritating being in my toes than in my legs.

Have you had your Iron levels checked ? sometimes if you're anemic it may make your RLS worse. You may want to buy some Iron supplements and see if they help, also you might want to get some vitamin D supplements. My Doctor checked my vitamin D level and it was so low he prescribed Vitamin D2. If you try this I hope they help you to get some sleep.

Have you tried talking to your Doctor and asking him if you could try taking Ropinirole for your RLS?

I take ropinirole 1mg and 3mg.,the 3mg is for night and the 1mg is for during the day. I can't do without my ropiniroles, I did one time and vowed that would NEVER happen again!

I hope that I helped you by suggesting thing's for you to try,If you try some, I hope they help you !!

[JakeRLS in reply to bauerannec]

Be careful if augmentation starts to take over. I loved Ropinirole until after 6 months, my symptoms rapidly worsened. For for the next few months while withdrawing I cursed it.

[Yakester]

Are you taking magnesium? Also no caffeine. Sometimes sugar can cause problems. And alcohol. Try rubbing lidocaine on your legs. You never know what will work cuz we’re all different. Good luck.

[Hidden]

I second the Lidocaine that Yakester suggests! It works well!

[lauraflora]

If you can figure out what triggers your RLS, you can avoid most of it, at least most of the time. I think, once it is set off, you just have to ride it out or rely on some medication (altho those have problems that come with them, as well.) But if you can prevent setting it off, you are ahead of the game, at least to some extent.

However, glutamine is not the whole issue - there is also inflammation. But do get those iron levels checked. As you are female, young (still menstruating) , and have had children recently - it would stand to reason that you have low iron levels. RLS is rather a mixed bag of problems, and one has to look into them all. Don't give up! You'll find a lot of good info on here. And magnesium 'oil' does help many people - rubbing it on the offending area. RLS is certainly not a 'one-size-fits-all' problem. You have to use trial and error. Good luck!