Decades of RLS getting worse

[JimmYLegsCanada]

I'm a male in my early 50s who has been suffering from insomnia and RLS all my life. I remember as a teen being confined to a leg cast and having the irresistible urge to move my leg which couldn't happen because I was in a cast to my hip. It damn near drove me crazy. The doctor called it growing pains. I also remember being a child in school reading with a flashlight under my blanket because I could not sleep. I would go to school dead tired every single day.

It wasn't until my early 30s that I was finally diagnosed. I was trying to deal with my chronic insomnia, which lead to sleep deprivation and night terrors so vivid that one night I woke up straddling my live in GF trying to choke her because I was acting out a dream where I was subduing an intruder. It was a huge wake up call.

There has never been a sleeping pill that allows me to have a normal sleep. I can be passing out tired, tripping over my feet and still won't sleep. Every sleeping pill I have ever tried has made my RLS worse. Zopiclone, Lorazempam etc.... you all know the names. I dealt with the problem by adopting a lifestyle and employment that allowed me to sleep in the day and work in the evenings or night. Bottom line, if I am forced to be awake in the morning I will NOT be able to sleep well at night. There are times when I HAVE to work in the morning so sleep is obviously important.

I also discovered cannabis. For years, I was able to get a good nights sleep by smoking a joint before bed. It calmed my RLS and dealt with the insomnia. Now, years later, I have developed a tolerance to cannabis. I was taking 200 mgs THC before bed and not even feeling it. CBD did absolutely nothing for me. I could possibly increase my THC intake but honestly the level required makes me uncomfortably high and leaves me utterly dragged out the next day.

Orgasm used to help. Whether alone or with a partner if I could achieve orgasm it would send me off to sleepy land. Now it makes it worse. It makes me sleepy for a few minutes but if I don't fall asleep in those few minutes RLS kicks in ferociously.

Those are some of the things that used to work but don't anymore. The past few months have seen my RLS symptoms increase dramatically. It's gone way beyond my legs. My arms, my back and neck. When the symptoms would subside upon movement for 30 seconds or a minute, now they resume seconds after I stop moving. I get it sitting still watching TV in the evening. Sometimes while gaming or reading in the evening but not often. I suspect that is because my brain is active and possibly ignoring or blocking it.

A few more complications have arisen. I had a surgery for a groin hernia a few years ago. Now I find it uncomfortable to sleep on my side. I can feel the mesh digging into my insides. I was always a side sleeper, now forced to sleep on my back. That's not helping. More recently still I have injured my shoulder which will take months to heal even if I don't have surgery and cannot change position easily at all without pain. Pain is also making my normally occurring insomnia worse.

The doctor gave my T3s for the pain. For a few days they worked like gangbusters for both my insomnia and RLS. Now they don't do a thing unless I take a larger dose which then will cause me constipation. The T3s have 30 mgs of codeine so I assume it helped, like I read about low dose opiates, but I think the caffeine in the T3 is offsetting the benefit of the opiate at this point or its simply not enough.

I also have PLMD. Not diagnosed in a sleep lab but I have smacked and kicked my wife enough times while asleep that she sleeps in another room and has for about two years. Sometimes, the twitching will wake me up. With this shoulder injury my flailing limbs wake me up in agony as I subconsciously move it in a way I shouldn't.

For the past 3 months my RLS and insomnia is the absolute worst it has ever been. I have not had more than 2 hours of uninterrupted sleep 9 nights out 10 in this period. I'll typically finally fall asleep at 6-7 am, sleep for an hour or two the spend the rest of the time half asleep half awake until noon or so. I used to be able to sleep very well in the mornings but not anymore. While awake I am a walking zombie. Tripping over my own feet, forgetting the most simple of things, dark circles under my eyes and feeling so sick because lack of sleep makes me nauseous. I've lost 20 lbs in 3 months from not eating enough. I'm constantly irritable, anxious and now, depressed. I wonder if going for a walk in the -20 woods and collapsing in the snow to die of hypothermia isn't so bad. I hear its a peaceful way to go. At least I would be asleep before I died.

I'm not taking this lying down, as crappy as I feel. I've bee researching like mad and talking to my doctor. I have an appointment coming up where I am telling her to refer me to a sleep specialist. There is only one option within 500 miles of me. I discovered them on my own, my doctor is a bit useless, and I am demanding a referral. I called them directly and a referral is required. The bad news is the wait time is almost a year, though they did say it could be as low as 3 months for severe cases. Would I count as severe?

In the meantime I am taking an iron supplement. I just started this week. 20 mgs daily in a liquid with VC and some B vitamins with it.

I am taking magnesium, D3, Vitamin C, Zinc, calcium and copper. I wasn't taking those for RLS but they don't help or hurt it so I will continue. Immune support mostly.

I quit taking cannabis a few days ago to try to clear my receptors. My sleep sucks with or without so a week or two of no cannabis should reset my receptors and maybe it will work again.. even a little.

I will not take any dopamine agonists. Full stop. The potential side effects are not worth it to me. I had an uncle to was on them for actual parkinsons. He was arrested for exposing himself in public and went bankrupt from compulsive gambling brought on by the drugs. I will not go down that road.

I've tried to get my doctor to prescribe low dose opiates but she refuses unless I try the other drugs, like levadopa or gabapentin. Frankly, I do not trust any drug that is going to mess with my brain chemistry, as messed up as it is. I had some past experience with various anti-depressants as a sleep aid and for my anxiety but they all made things worse. Bad dreams, sexual side effects, mood changes, depression. Not for me. Tried a few. Paxil, Effexor Mirtazipine.. none helped enough to justify the crappy way they make me feel.

Also, I have been tested and do not have sleep apnea. I took a machine home and did the test. The only smart thing my doctor has been able to add to this.

So, here I sit. I hope I don't have to wait a year to see that specialist. I can barely function now.

[badnights]

Hi JimmYLegsCanada, I'm in Canada too.

You are in a dreadful place, but I have to say your experience with your uncle, and just who you are, has saved you from an even worse place. Thank goodness you will not use dopaminergic meds. You are aware of the immensely damaging Impulse Control Disorder they can cause. There is something else they cause which you should be aware of, and that’s augmentation of WED/RLS. They make it worse. At first they make it better, but it starts to get worse, starting up earlier in the day, getting more intense, spreading to other body parts - - so your friendly neighborhood well-meaning ignorant doctor raises the dose, which makes the problem worse, so he raises the dose…. etc. Coming off dopamine meds when augmented is a special kind of hell.

Augmentation is also caused by levo-carbidopa (aka Sinemet), which does not cause ICD. A measure of a doctor’s ignorance about WED/RLS is whether she would prescribe levo-carbidopa for daily use for a WED/RLS patient. Bad bad bad idea. Augmentation happens even faster on Sinemet than on the dopaminergics. Please provide the RLS Foundation’s Medical Bulletin to your GP. Please. Instructions for how to acquire a copy are in my signature link. You will want to read it yourself too.

You’re right that keeping your brain engaged blocks the symptoms. Useful to know, but not helpful when trying to sleep.

WED/RLS is generated by a brain iron deficiency. Your iron levels can be fine in your blood but deficient in your brain at the same time. The simplest solution, especially for people who have never taken dopaminergic medications, is to take iron. Oral iron, or IV iron. Most doctors don’t know that WED/RLS can be treated with iron, nor that measurement of serum iron does not tell you if iron in other organs (like the brain) is sufficient.

I assume since you’re taking iron that you’ve checked with your doctor to be sure you’re not in danger of iron overload? If you haven’t please do. I assume by 20 mg you mean 20 mg elemental iron. That may not be enough. 60 mg is commonly taken. It will take about 3 months to have an effect.

Have you had iron bloodwork done? People with WED/RLS should get it checked every 6 months or so, especially at the beginning of treatment. The following should be analyzed:
iron
TIBC (total iron binding capacity)
transferrin saturation (aka saturation index)
ferritin
The last one is not part of the standard iron workup. You have to ask for it specifically. There are people here who can help you interpret your numbers. I will just explain ferritin. It is an iron storage protein. If it’s low, there is an iron deficiency somewhere in your body. If it’s high, you either have lots of iron everywhere or you have an infection or inflammation – in other words, if it’s high, you know nothing more than before. Labs will say 20 nanograms per milliliter (ng/ml) is fine and maybe it is for healthy people, but that’s not so for us. We need 100 ng/ml. It may take a long time to get there at 20 mg Fe daily. The good news is, if you have ferritin under 40 and some other things, you’re a shoe-in to get IV iron, which will have a more dramatic effect than oral iron (or, for the unfortunate quarter of WED/RLS patients who get one, no effect at all). Please download the 2018 consensus paper on iron treatment of WED/RLS from my signature link.

The sleep pain is a hard one. Will your shoulder and groin allow you to lie on your stomach on a long stack of pillows, legs splayed to the sides like a frog? This can be hard on the neck, but sometimes is enough to allow me to fall asleep, and I partly wake up to roll off the pillows. Don’t know if that would work with your shoulder. The face-down frog-legs position seems to still the symptoms for me if they’re not too bad.

You could be right about the caffeine in the T3s. Could ask your doc for codeine without caffeine. It’s almost like you’re allergic to caffeine – it’s not actually an allergy, but it might as well be.

Advice to get to the top of the waiting list for sleep clinic: if they ask about symptoms, tell them you fall asleep driving. WED/RLS patients rarely do, even though we’re so massively sleep-deprived (there is only one disorder that causes greater sleep loss, and that one is invariably fatal), because we also have an unusual amount of glutamate in our brains. (Glutamate is an excitatory neurotransmitter.) But the sleep clinic will see you as high priority if you say you fall asleep operating heavy machinery or similar. Don't feel guilty about saying that, because in reality you are more in need of help than most of their clients; they just don't ask the right questions. The people who put the questions together can't envision the extent of sleep loss we endure. Anyone without WED/RLS who lost that much sleep would be asleep whether they liked it or not, in whatever situation they found themselves - whereas we cannot sleep, no matter how much we need it.

You might be better off seeing a movement disorders specialist, which is a type of neurologist, but honestly, it’s all hit or miss. There are three types of specialists who tend to evolve into sleep specialists:
- psychiatrists (via an interest in the many ways that psychiatric issues affect sleep)
- pulmonologists (via an interest in sleep-disordered breathing) &
- neurologists (because of the many ways neurological issues affect sleep).
The ones who are supposed to know about WED/RLS are neurologists specializing in movement disorders, but not necessarily so.

When you deal with your GP, keep her on your side by being polite (but firm). You might need an ally. And even when she refers you to a specialist, the specialist will send her the recommendations re what to do with you. The specialist will probably not prescribe medications for you him/herself. It might even be the GP who goes to bat for you, trying to get you an iron infusion.

People have had mixed results with cannabis, as you can see by searching this forum.

No sleeping pill will ever help as long as the WED/RLS symptoms are not controlled. Even when they are controlled, you might experience problems sleeping (that excess glutamate) but not everyone does so let’s not worry about that.

Re medications, no dopamine meds. Yay. I’m happy you’re there already. (It might be ok to use levo-carbidopa now and again – like, before a plane ride. I use it intermittently like that. But never more than 2 nights in a row and never more than 3 times a week. Those are number I invented for myself, but they work for me.) You might want to try Horizant, which is a pro-drug of gabapentin. Yes, it messes with neurotransmitters. You might want to give it a try so you can get some sleep, because the mess that’s been made of your brain from not sleeping is probably much worse than what this medication would do. Horizant is waaaay better than gabapentin – the latter is absorbed erratically and so has erratic effects. Caution if you take it, to monitor yourself for sudden changes in mood or deepening depression. (there is no easy win here). Take it easy, don’t ramp up the dose very fast, give it time.

And work on the iron angle. If you can get your iron up, you might not need any other medication.

Also, you might see if your doctor would try you on dipyridamole – but there is no dosing information, we would be guessing based on the few people here who have tried it.

I have to admit, I’m excited for your chances of improving, because you have never touched a dopamine-type med.

Another thing that will help if your symptoms are moderate, but not when they're bad, is a pneumatic compression leg wrap e.g. search ebay for Manamed PlasmaFlow

[JimmYLegsCanada]

Dammit I just typed out a huge reply and it failed on posting. I could cry right about now. Like an hour of one handed typing all gone. When I get up the energy I will replay again.

[JimmYLegsCanada]

My post failed because I typed it in the quick reply section and when I went to post it I hit the big red POST REPLY button which took wiped it out. If I wasn't so stupid with sleep deprivation I would have understood it. From now on I will copy/save before hitting the post button.

Badnights, thank you for your thoughtful and detailed reply. I have an update.

I reached the end of my rope yesterday and called my doctor for an emergency appointment. No real sleep in 3 days. I was starting to hallucinate and it scared the crap out of me so they got me in. My wife had to drive as I was in no condition to operate machinery. I could barely walk.

I staggered out with 3 prescriptions which I immediately filled.

60 mgs pregabalin/lyrica
15 mgs mirtazipine
50 mgs codeine time release. I literally had to beg for the codeine and as a condition she made me turn in my unused T3s to the pharmacy.

She tried hard to push the levadopa on me and I told her no and not ever.

Last night I took the codeine only around 12am. I wasn't able to sleep but it did suppress the RLS symptoms. I could feel them occasionally, but it was not bad enough to need to move. They just went away. I knew they were there but they weren't bothersome. It was an odd sensation.

At 4:30 am I took .5 mgs lorazepam from an old prescription and had a HOT shower. I was asleep by 5. I woke up at 8 but was able to go back to sleep in a few minutes. Woke again at 10 and was back asleep shortly and slept until 1:30 pm. It was GLORIOUS. First real sleep, broken as it was, in months. Today I have hope.

I am concerned about taking both the mirtazipine and lyrica. Both have prominent warnings about suicide. I won't lie, I have been having a fair amount of suicidal ideation these past few weeks. The lack of sleep, feeling ill, feeling disassociated from reality, hopelessness have all taken its toll on my mental health. The past two years have not been kind to me and the RLS is the icing on a very large cake. I have NOT discussed these feelings with my doctor for multiple reasons. Lack of trust and a noticeable lack of compassion are some of them. In today's database world I am concerned with being labeled a suicide risk. It could easily come back to haunt me down the road which is unfair because its clearly, for me, a transitional and situational problem directly related to the steaming impact crater that is my life right now. This is an RLS forum so I have no wish to elaborate but trust me, most people in my boat would probably feel the same way. I am depressed and there are many good reasons for it.

Its not like I have written suicide notes or started giving my stuff away. I do sometimes wish I could go to sleep and never wake up. I sometimes think about taking a walk in a snowstorm so as to die from hypothermia. Hope for a brain aneuryism or something like that. I've never planned a suicide or anything like that so I am not sure if these are dangerous thoughts or actual suicidal thoughts.

The mirtazipine specifically warns about taking it if you have those thoughts. I have taken it in the past for anxiety with no ill effects but it didn't really help either. Zero sum but maybe it will help me sleep at low doses. However, if the codeine/lorazepam combo works with no unwanted side effects should I really take the risk?

The Lyrica side effect profile scares the crap out of me. Huge suicide warnings plus a whole host of other dangerous side effects. I can't see myself taking it under these current conditions. Messing with my brain chemistry is not something I take lightly.

I was taking 20 mgs iron because I wanted to see if my body would tolerate it. I planned to ramp up to higher doses if it does. Well, it doesn't It gives me diarrhea and makes me nauseous. Looks like iron infusion may be the only way to go for me.

Interestingly enough, I have had problems with other metal supplements. I was taking a lot of zinc because of covid. I tried taking copper because it its not good to take large amounts of zinc without it. I vomit the moment the copper supplement hits my stomach, 5 mgs is not much copper but it makes me sick just the same. Perhaps my body has a hard time metabolizing some of these metals/minerals which may be why I have RLS in the first place. What do you think?

I wrote a lot more and will add it if I remember. My memory is not what it used to be, for obvious reasons hahaha. I certainly understand why sleep deprivation is used as torture. Its very effective. And its EVIL.

Thanks again and I look forward to hearing your thoughts.

[badnights]

Yup, harsh way to learn. I periodically copy-all when I'm composing, or move it off into Word or a text editor, where I can save from time to time.

If I were you I would take the Lyrica and not the mirtazipine, since Lyrica actually has an impact on WED/RLS symptoms whereas the anti-depressant doesn’t. I truly think you are in such desperate need of sleep that you are doing your brain more harm by not taking the Lyrica than you would by taking it. Remember, no one gets all the possible side effects, and plenty of people get none of them.

60 mg Lyrica is a pretty low dose. Try it for a couple of nights and see if it has any effect. It will take 1-2 hour to kick in so time it to kick in at the same time as the slow-release codeine – I don’t know the amount of time that takes but you can look it up.

There’s no need to tell that particular GP of suicidal feelings. I once had a similarly ignorant GP who sent me to a psychiatrist, who sent her a note after seeing me. He told her that lack of sleep can cause the symptoms of every single psychiatric disorder, including psychoses. And she was surprised. I don’t get why she was surprised, but there it is, some people (even doctors) don’t realize that sleep is essential to health…. Basically, I am saying your suicidal feelings are more than likely directly attributable to chronic extreme sleep loss. If you were depressed before all this, then there might be something else mixed in.

Re the metals: don’t take other metals at the same time as iron, since they can compete for absorption sites. If something makes you puke, don’t take it, it is poison to you. Did you have work done that showed copper and zinc deficiencies? If not, try to avoid them or ensure you’re getting your needed nutrients from whole foods. If necessary, sprinkle a bit (a half teaspoon?) of crushed dulse on one meal a day. Seaweed concentrates metals.

Iron can be taken with food if it upsets your guts; it doesn’t absorb as well but hey. Take it even if it gives you diarrhea - - unless you can’t replace the water lost and feel really sick. Be sure you eat lots of vegetables and soluble fiber, especially since you‘re taking codeine too, which is constipating. Take iron in the evening.

You need to ask your doctor for the iron-related analyses I recommended last post.

Another supplement that seems to be useful for WED/RLS patients - anecdotally, and with mixed results in formal studies - is vitamin D. I take 4000 IU every day. I heard it's best to take in the mornings because it can have an alerting effect.

[Rustsmith]

I totally agree with Beth about not telling your GP about your suicidal ideation. In the US, any doctor or nurse can place an M1 hold on you if they believe that you are a potential danger to yourself. An M1 Hold is essentially a medical arrest warrant where you are sent to a mental health hospital for evaluation. You can be held there against your will for three days. Many of these "behavioral health hospitals" are in the business of making money and are not there to help their patients, so they have an incentive to extend the 72-hr hold for as long as they can. Legally, they have to take you to court to extend the hold, which means that you are forced to hire an attorney to get out. They can even use weekends and holidays to extend the time before you have to appear in court or court shop to find a judge that has a crowded calendar. Some of the least ethical of these places will even drug up the patient before going to court so that they can say "see, we had to sedate him/her just to get them here". I should add that all this time the hospital is collecting $2K+/day from your insurance just for room and board. They are supposed to provide your normal meds, but since they don't understand RLS, it is questionable whether they would decide that your meds are really necessary and could force you to abruptly stop, even if doing so is dangerous. I was held for a week in one of these places and it was the worst experience of my life.

[sleepdancer2]

How well I remember days and nights like you describe. It was a long haul getting to a place of better sleep, but I got there. I'll share a few things that helped me, just in case you can glean something that helps you. Glad to hear you are not also going to have to address augmentation on a dopamine agonist. That was beyond awful.

Getting nutritionally sound was my first endeavor. Checked my ferritin and worked on getting it up closer to 100. B Vitamins, Magnesium, Vitamin D also on my list. Sounds like you're well on your way with this.

I had a TENS Unit prescribed for my lower back, and I began to use it at bedtime. Using it as prescribed for my lower back turned out after much experimentation to be most effective for me. It wasn't immediately successful, but I persevered, mainly because it was my only hope. Some nights I kept it on all night and would use it periodically through the night. My thinking was I needed to interrupt the signals between my brain and my legs, somehow break the patterns to which my brain had come habituated, allow my brain to heal, and rehabituate my brain to sleep. It seemed to me the longer I used the TENS the more improvement I saw, like the effect was accumulative.

The other piece of the puzzle was something mentioned above - how to keep my mind busy, yet sleep. Tried classical music, nature sounds - you name it. The only thing that helped was soft rock oldies at a level I could hear the words, but not loud enough to be stimulating. Here's my nonprofessional opinion on why this worked best. Because I knew every word by heart, I wasn't kept at alert trying to listen. Because the volume was enough to hear the words, my brain was given something to process and was less likely to get sidetracked with the movement impulses. I'm not gonna lie, it took months of consistency to make any sustainable progress, but the snatches of good sleep I got from time to time was enough to give me the hope and the strength to persevere.

btw, In recent years I only occasionally need to use the TENS or play music. I maintain the supplement support. Good luck going forward.

[badnights]

I love hearing your story, sleepdancer2. Gives me hope every time.

[sleepdancer2]

I love hearing your story, sleepdancer2. Gives me hope every time.

Thank you! Sometimes I feel bad about saying anything because so many have not found relief, but I just hope with everyone's input, there will be enough info to glean from that others might be helped. The info on this site taught me everything I know about augmentation, which was the beginning of change for me. Ever impressed by the breadth and depth of knowledge contained here. What a resource!
Kathy

[badnights]

Thank you! Sometimes I feel bad about saying anything because so many have not found relief, but I just hope with everyone's input, there will be enough info to glean from that others might be helped. The info on this site taught me everything I know about augmentation, which was the beginning of change for me. Ever impressed by the breadth and depth of knowledge contained here. What a resource!
Kathy

I know! Blows me away sometimes.
Don't ever hesitate to share your story. It's always relevant.

[Polar Bear]

Sleepdancer2 - I feel that everything is relevant, each and every thought and comment could be the little piece of information that helps someone else. It is many years since I found and joined this Discussion Board. I was searching in desperation and had never joined anything. I remember saying to my husband.... "You'll never guess what I've done' .... that's how unusual it was for me. Best thing I ever did.
It is good for us to read of the good results, it gives hope.

[Roy]

Hey Jimmy, sorry to hear your story. So much pain and sorrow. Hopefully sleep dancers story was helpful. I am similarly afflicted with RLS.

I concur that seeking mental health aids is essential. My tool is the Calm app which I use along with other meditation to relieve anxiety and gain peace.

Like you, I tried so many things that either worked for a time or had intolerable side affects. Oxycodone has been a blessing for two years now, and I thank my evolved sleep doctor for that. Do whatever you can to find a prescriber. Even though oxy has drawbacks (access for one), I'm experiencing dependency issues that creep up in the afternoon, making me jittery and irritable. I am considering a spinal cord stimulator to eliminate the need for oxy, but it's hard to justify an implant without clear data (even anecdotal) as to its long-term efficacy for RLS.

[badnights]

I'm experiencing dependency issues that creep up in the afternoon, making me jittery and irritable. I am considering a spinal cord stimulator to eliminate the need for oxy, but it's hard to justify an implant without clear data (even anecdotal) as to its long-term efficacy for RLS.

Something you could try in the meantime is a drug holiday - take time off from the oxycodone. Probably it would have to be at least a week perhaps 10 or 12 days. In the meantime, you would have to use a dopamine agonist and preferably also one of the alpha-2deltas (gabapentin, pregabalin/Lyrica, or gabapentin encarbil/Horizant) in order to keep the DA dose low. Taking a DA will be pretty scary if you've augmented before but it will only be for a week or two, hopefully no augmentation in that amount of time (tho I augmented in days so it's possible).

There actually are anecdotal successes of spinal cord stims for WED/RLS - check out debbluebird's story on this board, and I am pretty sure there was someone else - a search of the board should turn up previous discussions on this topic.

EDIT: My apologies, you are aware of Deb's experience and have chatted with her about it. I thought you sounded familiar.

[Roy]

Thank's Badnights,

What benefits might a drug holiday bring? I understand the "costs": pain getting off oxy, risking further augmentation, pharmacy/doc hassles, but unclear about the benefit it might bring.

I have sought-out Oxycontin (the extended release oxycodone) but the generic version is unavailable and the non-generic is $300/month, beyond my budget. The largely-successful Oxycodone is $20/month. Interesting to read that Oxy does have an "alerting" element for some, and I am def among that group, esp when I get up @ night to re-dose. A pharmacist said that morphine extended release is inexpensive and available. Will talk with my doc about that.

Regarding the SCS, I'd like to hear of more clearer successes that answer the long-term efficacy question. As it's use for RLS is always secondary, it's hard to find data or studies.

[Rustsmith]

Roy, I have only heard of one study that looked at the use of spinal cord stimulators for RLS. There was one done a couple of years ago, I think it was in Iowa. I also found this publication in 2019 where it was used. https://www.karger.com/Article/Abstract/494737

As for opioids, you might also ask your doctor about trying methadone. It is a once/day med and is also very cheap. My total cost for 30 days worth of 5mg tablets (total cost, not my co-insurance cost) is $8.20.