Restless Legs Syndrome

Young, fit but my body is my worse ennemi and I feel destroyed

Hi. I am 37, fitness instructor and a happy married man with a great lifestyle.

But my worse ennemi for the past 6 years is restless legs syndrome. It has become so much worse in the past year that I am now writing at 2:44am to make me feel better that someone out there care about this disturbing and life changing condition. I know it could be worse but it’s my life and my story right now and it’s not nice.

I now sleep alone as my partner doesn’t want to share the same bed due to my frolic movements that don’t seam to stop. Heat is making it worse. Even my arms are affected. My mood has changed to the level that I now am very angry each day and shout at people as I am so tired from lack of sleep. I try to nap the day time if I can to refresh me. My work is affected too.

I have tried cold ice, massaging, electrical massage machine, Chiropractor, marching, drinking plenty of fluid, extra iron each day and extra potassium. I do a lot of exercises.

My doctors won’t do anything about it or give me anything.

I am on the edge of exploding and I am lost for solutions and worried to harm myself as I have even hit my legs so hard before to get another pain to forget the discomfort of the RLS.

Thank you for being there whoever you are.

41 Replies
oldestnewest

That's such a sad story- and very frightening for you and those around you.

First- are you on any medications - doses and length of time on them.

Some medicines actually are bad for rls- such as antihistamines and some antidepressants - both of which may be given to sufferers of rls as cure by ignorant doctors.

Many people find some foods trigger rls- I find rising agents in biscuits etc , alcohol ( sulphites) high salt , msg and numerous other things.

The best thing is to make out your own food diary , which will probably quickly show up relationships.

Another thing to do is get your blood tested for " serum ferritin" and get the actual number - not a' pat on the head' "you're normal"!

Please come back to us with that info and we should be able to help you get some peace back in your life.

Magnesium citrate (200mg) is worth trying- about 2 hrs before bed.

Hope you find peace soon - you are certainly not alone.

Meanwhile have a gander at these two sites for a peep into the world of rls.

rlshelp.org

rls-uk.org

Cheers.

10 likes
Reply

Gee Madlegs we must have been typing the almost identical info at exactly the same time! Our minds meet!

5 likes
Reply

Thanks. I do not take any medication apart for acidity in my stomach and intestin issues. Otherwise nothing but supplements. I am thinking to reduce amount of sugar after late noon that may help me too. Will try to see if my doctor wants to support me better. Thanks for the details

3 likes
Reply

What are you taking for the acidity. For a short while after you take antacids such as Pepcid, rantidine, your RLS just might go crazy.

1 like
Reply

For over a year now and I don’t think this makes it worse or affects it

Reply

Since you take supplements (I do also) a particular one that has been earmarked as bad for people with RLS, is glutamine. It may be helpful for people without RLS in different ways, but it can (I think I remember this rightly) turn into glutamate which can irritate RLS and make it worse.

So look into that, in case you are taking it.

Calcium citrate as well as magnesium citrate (easily absorbable forms of theses minerals) can help to calm the nerves themselves. Look that up also. I have read that while magnesium can be taken before bed (I take 600mg) the calcium should be spread out over the day as you body can only absorb smaller amounts at a time. Maybe 1000 - 1500 mg total?

Reply

Your post will go straight to the heart of all the unfortunate people who have cause to be on this forum. You express the misery of life with Rls very well. You are not alone and very welcome on here. You will find lots of helpful information and understanding also.

You should think carefully about whether you have made any changes in your life to cause this worsening of your symptoms in the last year. There is a list of medications (over the counter and prescription) that can worsen Rls on the website rls-uk.org - find drop down menu and click on ‘treatment’ and scroll down. Anti-histamines and benelyn cough syrup are examples.

Stretching can help. A lot of people get relief from taking a bath with epsom salts. Or taking oral magnesium (though it doesn’t work for everyone). You may have heard of Kratom which can be very effective but unfortunately it is not legal in UK. There are some passionate advocates of various restrictive diets eg fodmap, wahls etc though not everyone finds that their symptoms respond to dietary changes.

Are you taking your iron with vitamin c and on an empty stomach? A lot of people on here favour iron bisglycinate (gentle iron) which can be purchased in holland and Barrett.

The attitude of your doctors sounds appalling. It sounds like you might benefit from medication and you could possibly suggest to your GP that they consult the above website. Do be careful to do your research (you will find endless observations on all the standard medications on here and no question goes unanswered) before you accept whatever your GP suggests as the medications can bring problems also and unfortunately the medical profession is very under-informed about how to treat the condition.

14 likes
Reply

Hello Kevin, I am so sorry to hear you have this horrible condition. I totally get you since I sometimes feel the same way. I scream at myself, my dogs and have hit myself, etc just like you. I wish I could tell you I found the magic bullet, but there is no such thing. It is 1:00 AM and I should be asleep as I took clonazepam, oxycodone and zanaflex. Sometimes, nothing works especially (for me anyway) when the moon is full. I also notice the more tired and stressed I am, the worse the RLS gets. Just keep trying until you find a doctor who will help you. I have a neurologist who is willing to give me the meds, but sometimes you just have to accept that there will be times when nothing works very well at all. Check out RLS.org for more resources and keep at it. You will have good nights and bad nights. Hope you feel better, you are not alone.

11 likes
Reply

Also check out a recent post by Birdman70 for a gentle stretch suggested by his chiropractor that can be done in bed which I am finding quite helpful. It is very soothing at the least. Scroll down the post for his second description which makes it easy to grasp.

You could also look at a recent post about relief afforded by sexual arrousal - nothing is sacred on this forum!

3 likes
Reply

Hi kevin

Here is Birdman70's thread:

healthunlocked.com/rlsuk/po...

As involuntarydancer suggests, scroll down the thread for his second description which is easier to grasp.

healthunlocked.com/rlsuk/po...

2 likes
Reply

Will try both. Thanks.

1 like
Reply

I'll chime in here about taking iron. I take iron bisglycinate on an empty stomach about an hour before bed and it relieves the RLS for the whole night. Once and a while I might wake up and have to take a second. When I first read about taking iron on here I didn't realize that it's better taken at night. I was taking it in the morning and found no relief whatsoever from my night time RLS and I fully expected it too that's why I don't think taking it at night is the placebo effect. When I switched to nights I found that I needed two capsules to keep the RLS at bay. Eventually, by eating dinner earlier in the evening and a smaller meal, I believe, I was able to go down to one capsule. Mind you it seems this trick only works for a handful of people on here but as long as you're taking iron I recommend taking it (hopefully you're taking iron bisglycinate) an hour before bed.

Also watch out for other supplements you might be taking at night. People on here have had trouble with melatonin, antidepressants, allergy remedies, heartburn remedies, and I myself I believe had to switch taking b6 to daytime rather than night time because it seemed to make my RLS worse. I read up on it and it's possible that b6 raises serotonin levels. Anything that raises serotonin, especially if taken at night, tends to interfere with dopamine which is already messed up in people with RLS.

4 likes
Reply

As a fitness instructor, I'll imagine that you use energy drinks. I've found relief by avoiding sugar after lunch and in the evenings. You may like to try the same to see how you get on. A packet of glucose tablets is a handy standby if you're wary of 'hitting the wall'.

2 likes
Reply

Hi. I don’t use energy drinks as I don’t believe in them. But I do have a problem with sugar and I know it does affect me too. Sugar is so hard to give up as it’s a drug to us so will try to force myself more and make a new habit of it. Thanks for this reminder.

3 likes
Reply

Hi Kevin

Are you drinking more coffee to keep going throughout the day ? Some sufferers find giving up caffeine helps. Giving up sugar must be very difficult as it is in so many things and makes food taste good. ;)

2 likes
Reply

Yes. Much more coffee too but not after 4pm and I finish work at 9pm most evenings form teaching fitness classes. And I use sleeping tea with no caffeine that is supposed to help and I use the CBD drops.

1 like
Reply

I drink a lot of coffee, mostly without sugar, and I've never found it to affect me, but we're all different.

1 like
Reply

Caffeine really affects me. I know it too well. Yes we are different. I don’t have sugar in coffee though. :-)

1 like
Reply

I don’t find that caffeine consumption makes a huge difference to whether my legs are bad. Neither does sugar have an appreciable impact. Ice cream and alcohol are the only dietary contributors and even they are not reliable.

1 like
Reply

I am so sorry your rls is so bad, we have all been in the same boat not sleeping in the same bed is the first start , I just want to tell you what I have done and the success ,my legs have been just like yours I have cut out sugar and sweet things the sweetest things I have are grapes, I have just had14 nights sleep wonderful don’t ask me why but it’s true, I still take tramodol Pregablin and the patch but have taken those for 2 yrs with not much help , perhaps after 47 yrs of rls it’s my turn for it to go , read the story’s on this web page and change your doc Good luck xx

1 like
Reply

aw bless you - I feel your pain :( I too hit my legs in an attempt to ease the pain - ridiculous really as hitting is causing another pain! but it seems to work for a few mins at least. I have tried gabapentin, cold/hot packs, tens machine, medicated soap, magnesium spray and all work for a while then I seem to get immune to them !

I am taking pregabalin 150mg and extra iron atm but to no avail :( I am going to suggest to my doc that I may be going through augmentation.

I am going to give Epsom salts a try. I am going to soak in them, rub them in and drink them. I will get back to you on my progress.

I have also ordered a knee pillow to try to release the pressure while sleeping on my side.

1 like
Reply

Ok. I am trying to avoid medication as it can’t be good for you long term. I am going to try heavy blankets made for autistic and anxious people. Apparently it works on some pressure points and helps you feel secured and sleep really well. I tried a cheap version with a heavier duvet and cover and I slept so much better. So there is light somewhere.

2 likes
Reply

A good point by eitheror that iron bisglycinate taken in the evening can help some (but by no means all) but supplements in the evdning can sometimes worsen symptoms.

2 likes
Reply

You mentioned intestine issues in 1 of your replies. Any chance you have celiac disease? I do. RLS is a common neurological component of CD. Anyway, there are many natural things to try. Because of CD the meds don't absorb well and augmentation comes quickly. I find intense exercise makes RLS worse and so does mental stress. Vacation time I have no rls or very little.

Hope some of this helps. Ice helps me some nights. Heat never. I add extra time to sleep because I must get up and walk around during most nights which is the quickest way for me to stop the spasms. I use that time to work in amber lighting which is like firelight to do some light chores. This compensates for going to bed earlier.

Good luck.

2 likes
Reply

Thanks. Ice does help too for me. I am no celiac as I had the test done. It’s more intestin IBS control. I just had 2 weeks off and it’s gone worse. :-) I sometimes walk at night and when cold outside I sit on the freezing patio and wait for my glutes to send me a signal when it’s enough and it works too. But it’s annoying too. Thanks

1 like
Reply

Geez, so sorry! This syndrome is pure hell, isn’t it?!! Have you tried a cooling gel or a numbing agent? I recently started using Lidocaine Plus Pain Relieving Liquid on the nights when my legs are bad. This does a good job at numbing the nerves. I also use knee-high support stockings since the tightness these provide offers help in calming the movements. I also use «Relaxing Leg Cream» by Magnilife, which does a good job at calming the legs (not to mention it feels good!). As a fitness instructor I’m sure you’re familar with trigger points. I suggest massaging those. Also, here are 3 exercises especially for RLS:

healthline.com/health/restl...

The calf, front thigh, and hip flexor stretches are found halfway down.

Take care,

Jessica

2 likes
Reply

Thanks Jess. I am going to buy a heavy duty blanket designed to help relax and sleep better. Made for autistic people and anxious ones but I did a little trial last night and I slept well. I massage myself each night before bed when I take time with an electrical foam roll called Pulseroll and this relaxes my tension in muscles after exercises as a recovery but massage doesn’t help the nerves for long. I will get there. I am going through grief too which some nurses say can affect your mental and nerving system. X

2 likes
Reply

You aren’t by any chance talking about a weighted blanket by «Sensory Goods», are you? These are also specifically designed for those with autism and other sensory disorders. I just got mine a month ago. It really helps cut down on my anxiety, as well as keeps the smaller leg attacks at bay. Bigger ones and I unfortunately just end up kicking it off (it’s an 8 kilo banket!). It helps me look forward to bedtime again, though, and that is a huge improvement! I do see a slight improvement in my sleep quality too!

1 like
Reply

Hi kevindod, I'm wife of Hamish58 and really feel where you are right now. This has been a truly hard and often desperate year and a half for us learning to cope with Hamish58's rls after a back operation made it far worse than his hereditary version. We have both learnt so much from this site reference the triggers that can make it unbearable to cope with. Mostly we've noticed all Sugar, too much Wheat any caffeine or alcohol, antihistamines, flavoured crisps with Paprika in, and now we're watching salt. If he has a worse night we can usually trace it back to a trigger or two, and when he has a few too many triggers in one day the accumulative effect is far worse. Be strong with your doctor as they need to get on board with medication that's available for you as it will definitely help calm it down to a better level but augmentation is a problem with a lot of them ( never knew what that meant before being a rls wife ) As I say to my husband don't give up hope because medication is always getting better and one day a more effective drugs may become available which doesn't exist now. He's been seeing a Kinesiologist that's helped tremendously with diet and any vitamin deficiencies. Just like this site suggests he needed Iron in liquid form, Magnesium and Vitimin B's. Please keep in touch with this site as it's been a complete eye opener to us. Good luck and don't give up hope !

7 likes
Reply

Thanks for the support and kind words

2 likes
Reply

i to was like you about 8 years ago, my doctor calls mine restless leg syndrome/ maclonic jerking, sue i spelled that wrong. which means i have more aggressive movement then regular RLS. after going thru a depression period i to was on line trying to find someone in the same boat as me. I came across a guy saying everything i was feeling with my legs and nothing i have tried helped. He said the only thing that has helped him is Oxycodone well i had just recovered from an knee replacement and as i was sittting there at the computer reading this guys story it dawned on me i had left over Oxycodone from my knee replacement, i went to the medicine cabinet and took 1 and went back to reading this guys story, as i sat there with in 20 minutes i could feel that wierd sensation leave my body. I found my salvation. I have been on it for about 8 years now, a regular doctor most likely will not perscribe it for you unless you have had him for years, most likely you will have to find a good neurologist that knows something about RLS. Good luck and hope you find relief soon.

4 likes
Reply

I’ve been there. There are solutions, so please take heart and don’t worry. First, get an emergency appointment with a movement specialist at a sleep clinic ASAP. Tell them you have severe RLS, and it also sounds like PLMS or Periodic Leg Movement Syndrome.

I was on Ropinerole for several years and it did stop the eposodes, but I eventuality developed augmentation which is an side effect that can occur over time making the condition flare up worse than before often involving the whole body. Finally I found this site and was guided to titrate slowly off Ropinerole. I was also on Gabapentin, it was okay, but only partially mananaged the condition.

Then my doc put me on Lyrica—this was fantastic, but it takes 3 or so weeks to fully kick in. Be patient, it’s worth it!!!

I had to slowly titrate off the Gabapentin while switching to Lyrica. I did go through a horrible month of withdrawal though with that and Ropinerole.

My suggestion to you would be to get on Lyrica or Pregablin as it’s generic is called. Also talk to your doc about being on something else while the Lyrica kicks in as it takes 3 or 4 weeks to feel the full effect. Maybe something like Clonazapan for the short term See if others on this site agree with me???

It may also help to be on Tramadol at the same time as Lyrica, since RLS is best managed with a combination of two meds.

I have been on a combination of 100 mgs Lyrica 3x a day with 100 mgs of Tramadol 3x a day for several months now, and I am pretty much symptom free.

Avoid alcohol as it triggers the RLS. You might want to read my back log posts—Bganim1947—to see what I went through to finally get free of the RLS, so you can avoid my pitfalls.

The most important thing I have found to remain symptom free while on Lyrica is to be vigilant about taking it (or any medication) for RLS at exactly the same time every day. I mean EXACTLY! It really really makes a big difference to keep your symptoms st bay. I use an alarm 3 times a day on my phone. That was the only way I could remember to take my pills. When I do, no RLS.

2 likes
Reply

You get to the heart of this hideous affliction and the frustration of treatments and possible relief. Sure, I tried the soap under the sheets. I would have tried ANYTHING to get relief, to get some sleep. Sleep used to be the refuge you could always count on - now RLS takes that away! RLS is such a complex biochemical condition hitting different people from different directions. The best information on the internet is at Johns Hopkins University - Neurology Dept - menu on the left. hopkinsmedicine.org/neurolo...

2 likes
Reply

I know what you mean. I have had restless leg for probably 30 years or more. I didn't know what it was in the beginning. My hands would feel hot and had a tickle which seemed to run up and down my arms so I couldn't sleep . My legs would twitch for at least one to two hours every night with that tickle running up and down my feet and my legs. Drove me crazy. I also seem to get it now during the day if I sit and try and relax it will start up immediately . I tried many prescriptions finally I am using ropinerole and that seems to be helping. I have gone from 1 mg a day up to 3 mg a day. I make sure I take half a pill before I eat and the other half after. I find if I take too much I get severe cramps in my legs and I mean severe. I seem to have to keep increasing the dosage each year. I also think the ropinerole has an effect on my legs and feet as I feel stiff in the morning or if I sit for short periods of time and then get up and try and walk. I don't like the feeling of that either but what am I to do it's the only thing that I can take where I can actually sleep at night. I am seriously looking into CBD which is a form of hemp or marijuana that I've seen online that may help. At this point I have tried everything online that I could find and nothing else has worked so I will get back to you with the results.

1 like
Reply

Magnesium, magnesium, magnesium... if you are very deficient, you'll need to take high doses and change your diet to a high magnesium/low calcium diet. Exercise, stress, tea, coffee, alcohol, sugar and processed food deplete magnesium.

Magnesium comes out in your sweat when you exercise.

There isn't an accurate blood test for magnesium.

Magnesium citrate is one of the best ones to take for absorption and cost.

If you can get a copy, the book to get is the MagnesiumMiracle by Dr Carolyn Dean. I've had a second copy on order for months. It's life changing.

She has lots of advice on the internet though.

Hope this helps.

Reply

I take magnesium tablets every day with Vitamin B6 to absorb it better. Maybe need more of it. Need to check. I don’t read books as I don’t enjoy doing that. But will look for videos online and audio stuff. Thanks

1 like
Reply

There is hope because I find my rls comes and goes though it is not anything like as severe as many on this forum.

I am afraid exercise makes mine worse when it is bad which is not good news for you.

Being overheated and overtired are also triggers.

Reply

Kevin I have Kineiolage quite often I find that helps ,I expect you will know about it x

Reply

Not sure what that is actually but now started massage every 4 weeks and making a heavy blanket with pressure points to help me sleep

Reply

Kevin kineiolage, is pressure point massage especially by the lower back area xx

Reply

Hi mate.

Don't worry you're not alone. I'm a 30 year old male. I know how frustrating this thing is.

I wrote a topic here - with everything that I find most useful in it.

I hope it can help you.

healthunlocked.com/rlsuk/po...

1 like
Reply

You may also like...