42 and RLS worse than ever

[click4it]

Hello,
I just joined this site in search of answers.

I have had RLS all my life, but its never been a daily thing. It would just flare up from time to time if I was sitting too long & eating caffeine or sugar.

Now, I have had it EVERY single night for the last few weeks. I have also stopped taking klonopin about a month ago, which I was on for 5 years. Ironically, I was not taking klonopin for RLS, but for anxiety. When I found out how addictive it was, I decided to wean myself off it. I had not idea klonopin was used for RLS.

I need to go to the doctor to take a blood test to check for iron levels. If its ok, she said she will give some medicine, but I have no idea what kind yet.

What can I do in the mean time to sleep tonight!??? I also have shoulder impingement which I have pain at night, so I have a double doosey going on here. Sleep is needed at night and I'm not really getting any.

Thanks in advance.

[Rustsmith]

If you read through the forum on physical treatments, you should find a number of coping strategies that have worked for some of us. Unfortunately, we are all quite different, so what works for one person may be useless for another.

Several of these strategies are:
1. Take a hot bath. The temperature may need to be as hot as you can tolerate. You don't have to soak for very long and if it works you will know pretty quickly. One out, go directly to bed and try to fall asleep.
2. Try to do something just before bed that requires great concentration. Some work crossword puzzles and others do sudoku puzzles. The point is to focus your mind so intensely on an activity that you are distracted from the RLS sensations. Also, what ever you try doing, it is something that you would not continue to think about once you go to bed.
3. Stretching works for some and is completely useless for others.
4. Massage, if you can get someone to work on the problem portion of your legs just before turning it, that will often temporarily relieve the symptoms. Self massage is also sometimes effective.

Others may have other suggestions.

[ViewsAskew]

Given that you don't know your serum ferritin yet, I'd not suggest taking iron. BUT - you could simply eat more iron-rich foods - that is unlikely to raise your iron too much in the case it's already high. Cook with cast iron, lots of leafy greens, fortified cereals, etc.

Clonazepam is used for RLS/WED - it mostly knocks people out so they aren't aware of the symptoms (at least that is what some specialists think, as I understand it). Given that you were on it for 5 years, you're not likely someone who has issues with it - as I understand it, they likely would have shown up by now. That said, there are likely other things for anxiety that would help just as much.

Regular exercise helps some people - it likely will take a few weeks. Moderate cardio - walking for example - is perfect.

You also may have hit the point where it just got worse. Many of us have that happen - no real reason we can pinpoint. It's such a horrible thing when that happens .

Some people find their RLS/WED is worse when they are low in certain minerals. Vitamin D, for example. Another that helps some people (but a minority, unfortunately) is magnesium.

If you are in a state with medical marijuana, you might try that. Some people here use kratom. As a moderator for the Foundation, I need to add the caveat that any unregulated drug can be problematic. Kratom can also be habit-forming for some. The majority of people who use it here and talk about it have had NO issues - and they are very happy to have found it.

[figflower]

Hi Click4it. Are you taking any drugs or supplements that might be making your RLS worse? Antacids (ie Tagamet), anti-depressants, antihistamines, statins, melatonin, even estrogen, all have the potential for making symptoms worse. For me, even over-eating, especially in the evening can trigger it. Many women report worsening of symptoms around menopause. And many many people report a worsening of symptoms with any kind of spinal problem.

As far as quick fixes go that you might even have in your house are the following: 1) Teaspoon of mustard in a cup of water at bedtime 2) 1/2 teaspoon of cream of tartar (which is pure potassium) 3)...and my favorite one iron pill on an empty stomach before bed. I use iron bis-glycinate because it is readily absorbed into the bloodstream. However, others will take the ordinary iron (ferrous sulphate) and take it on an empty stomach with vitamin c before bed.

All three should work within one hour, if not less. Form and timing is everything with these remedies. The first two probably work, at least according to scientific studies, because they cause a "release" of dopamine. That's what the prescription drugs for RLS do - cause a release of dopamine. And, it's not that the studies say that these things work for RLS, it's just that a large enough quantity of turmeric (in the mustard) or potassium will cause a release of dopamine. After reading about several people that got relief from these two substances I decided it was time to do some research and found that they have that affect on the brain. The iron works by temporarily shoring up our genetically shoddy dopamine receptors which also leads to better release of dopamine. I'm not anemic, and I have incredibly healthy iron stores, yet whenever I have an attack I run for the iron and it has never failed me.

The iron also never fails my sister in law and ironically enough works for Viewsakew sister in law as well!!! Try it just once or twice then if it works talk to your doctor about it. If it doesn't work I would still have a blood test for anemia.

Muchas suerte!

[click4it]

I have been taking melatonin for a long time, didn't know that could make it worse. :/ Thank you for all the suggestions.

I just got test results back - range looks normal to me, but I need to hear from the doc.

Mustard in water? just regular mustard?

what is kratom? No medical marijuana yet but I don't like mary jane.

I actually felt it worsen when I started exercising more and eating better...go figure!

[Rustsmith]

click4it, the important thing with our blood test is ferritin. The "normal" range for the general population starts at 20, but for those of us with RLS it should be at least 50 and for those taking a dopamine agonist like pramipexole, ropinirole or rotigatine, it should be at least 100.

As for kratom, it is an herb that generally comes for SE Asia. It has an opiate like effect that many with RLS find is helpful. You can purchase it over the internet. But before you start looking, I suggest you search the discussion board for information because there are a number of different types of kratom and some are reported to be more helpful than others. There are also a couple of cautions, which you will see in some of those discussions.

As for the medical marijuana, this is somewhat new and we only have a few with any experience. However, the products that they seem to be gravitating toward are those that have high CDB and low THC. It is the THC that is responsible for the high. The high CDB products are the ones that are being used to treat epileptic children and are starting to be classified as hemp rather than marijuana. Also, most are not smoking it, but are using oils refined from the plants or vapor pens. Note - neither MM or the CDB type products are legal in my state, so I have no direct experience with either one.

[pinkynose]

Hi click4it. I think it is possible that you had RLS many nights before this but the Klonopin allowed you to sleep through it. I say this because I had been taking Ambien to sleep fairly regularly for years. I had stopped a few weeks before RLS hit me hard, every night. I started taking it again and switched it with Xanax or Ativan and was able to sleep most but not all nights without feeling symptoms. If i took Ativan at night it would last much of the day as well. Whenever I tried to stop those medications because of reasons similar to yours, it took some time to get out my system and then the RLS symptoms kept me from sleeping. I did try Klonopin and it had the same effect as the other drugs but was too strong for me. My neurologist recommended Gabapentin and I will be starting this week.

I have found that a heating pad by my bed sometimes gives relief if i catch the symptoms in time. I will let you know if I find anything else that works for me.

[ViewsAskew]

Many of us find that initially exercise makes it worse. Until mine was daily, anytime I'd start exercises when I hadn't been, I'd have terrible symptoms for a week or so. But, after I was used to it, it would get better. Not sure how long you tried regular activity.

Kratom is a non-pharma drug that comes from a plant. It's illegal in some states, not in others. There are a lot of topics about it - you can find them using the search function or just look in the Non-prescription Medicines, Supplements, Diet section.

[figflower]

If you can manage it, try stopping the melatonin for a few nights. That very well may be the entirety of your RLS problems. 1mg of melatonin and I have RLS for half the night. 3mg and I have restless body for the whole night. Let us know!!!

[click4it]

THANKS again...everyone.

I do have one question that is driving me ABSOLUTELY NUTS....why WHY does it occur at almost the same time every single night....starting almost exactly at 12am and almost all through the night till 5am...

I am SLEEP DEPRIVED.

My doc did recommend Pramipexole . I called to ask what it is and she's out of the office. Has anyone tried this???

I'm currently up right now WITH restless legs...its 1am...and I can't take another night of this!!!

[Rustsmith]

click4it, sorry to see that you are also up at this hour.

Unfortunately, the neurochemistry associated with RLS/WED is tied to the portion of the brain that controls wake/sleep cycles. It is still too early to be sure, but it appears that one part of RLS may be associated with the urge-to-move that we all know and the other part is tied to a chemical imbalance that prevents the brain from sort of shutting down so that we can go to sleep. This latter function is the topic of current research at Johns Hopkins, so hopefully we get some better information soon.

As for parmipexole, it is a dopamine agonist (or DA) medication. It is very effective in the treatment of the urge-to-move part of RLS/WED and is frequently the first drug that a doctor will prescribe to treat RLS/WED. It usually works extremely well for new patients, even ones like me who had severe RLS prior to starting treatment.
Unfortunately, it is tied to a phenomenon called Augmentation. This is where your body adapts to the DA so that you require larger and larger doses to get any relief. This can become a vicious circle of increasing the dose, your body adapts and so you need to increase the dose. Obviously this cannot go on forever and even worse, you cannot simply stop taking a DA without going through several days of severe discomfort and no sleep at all. How long you can take pramipexole without any problems varies from person to person. Some can use it for years without experiencing augmentation and others have problems after days or weeks.

Take a look through some of the postings in the Augmentation forum for more information.

The most important thing to keep in mind is to not get too far down the road of increasing doses before you have to get off of it. The current recommendation from one of the experts is that you should not take any more than 0.25mg of pramipexole. It used to be the recommendation was 0.50mg, so they have been moving the point where you switch to lower and lower doses. Also, you need to be aware that many doctors are not familiar with these limitations nor do they know anything about augmentation. They are usually familiar with the FDA's limits for the drug, which can go upwards of 4.0 mg, but this is for Parkinson's patients and not us. So this is something that you may need to control yourself and not rely upon the doctor. In fact, many of us have made it our mission to educate our doctors on this topic.

[Polar Bear]

click4it, I know only too well how you are suffering, all of us have been there.
This book is excellent, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

[figflower]

Click4it, I think I know why your RLS and a lot of people kick in late at night. I read that our iron availability drops precipitously at midnight and continues that way until about 3am at which time it begins to rise. I know that I am in the minority but I do not believe that pushing your iron stores up to around 100 will help much. There's just not enough people getting any type of relief. It seems that there are a lot of people who get relief from iron initially but then they stop and the RLS comes back or it stops working while they are on it. It has never stopped working for me. I only take it when I feel the RLS come on. I take a form called iron bis-glycinate on an empty stomach. Not only does it get rid of the RLS but I swear it puts me to sleep. My iron stores are around 100 yet I still get attacks. I think the reason the iron works (just for one night) is because it is available to the brain from the bloodstream, but once it gets stored forget it. I once tried the regular iron (ferrous sulfate) and it did not help, I assume because very little of it entered my bloodstream because this form is so hard to break down and absorb. Also, if your stores are too high, then I believe your body clamps down and won't let any enter the bloodstream. So this may be another reason it stopped working for some folks.

[ViewsAskew]

Figflower - it may be that you are one of the people for whom iron easily transfers to the brain - no one knows why. The blood brain barrier is there to keep that from happening, yet we need iron in the brain as that is where the cells cannot work correctly! And, some clearly does get through - the question is how much. My SIL is like you - she can take iron through food or pill and her symptoms abate. I did that years before I took iron regularly and it never helped me, unfortunately.

Some doctors believe that 100 is simply an average - some of us may need 200, some of us 50. some 300. And, some of us could get to 500 and nothing would happen. When infusions are given, up to 80% of people have partial to complete relief. 20 percent get nothing. The levels often reach 300. When the symptoms come back, a serum ferritin is given and the doctors then know that this is the number that must be maintained to keep symptoms away.

[figflower]

Viewsaskew I have a theory about those iron infusions. Iron infusions enter the bloodstream, clearly, and so over the several days of the infusion, a person's d2 receptors become Herculean in size, suck that iron up like no tomorrow. The person is able to stop the agonists and opiates. Once you stop the agonists and opiates you also stop the down-regulation of the d2 receptors. It's really bizarre if you think about. We're taking drugs of addiction that down-regulate our receptors when we need to up-regulate them. There's nothing special or different about me and your sister in law. Except that we're not down-regulating our receptors with agonists or opiates and we're giving our brains/d2 receptors a little pep up with when we have an attack.

80% success rate. Pretty darn high. There's something to it. A lot of people will eventually need another infusion. Maybe because the body wants to return to homeostasis or maybe whatever was triggering their RLS in the first place is still there in their lives. Everything from Statins to Estrogen to Sucralose to Digoxin to Over-eating will trigger RLS and probably down-regulate your receptors. I read a study (not for RLS) that showed that mice that were consistently underfed, even if they were obese, grew bigger and stronger d2 receptors. When you're hungry and angry and there are no pleasure foods provoking a release of dopamine, the signal goes out to the brain to ramp up the receptors. And ramp them up it does. Anaerobic exercise might do the same. I read that the lazy man's way to up-regulated d2 receptors is Uridine 5 monophosphate. A substance found in mother's milk and added to infant formula. Now we're in unchartered territory Nite nite