I have posted here before. My RLS life/history is driving me crazy. I have it in my arms, hands, hips, and neck… I have super bad nights where I can’t walk much less lie down. Every joint just literally “draws” up for lack of a better explanation. When I see RLS described as a creepy crawly feeling or tingling, or Coca Cola in the veins… I think what the heck kind of explanation is that? Mine is NOTHING like that. A supreme annoyance… debilitating. Last night… after about 4 nights in a row of terrible whatever you describe it….I had to look online to see if Restless Legs and Tourette’s are associated….. because I don’t simply have PLMD. I feel like I have Tourette’s of the boat. Absolutely cannot control myself. Help.
At my wits end…: I have posted here... - Restless Legs Syn...
At my wits end…
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Milescircus
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Welcome back to the forum.This sounds awful: in a previous post here you were enquiring about potassium, but I can't see details of any medical treatment that you've had for RLS? Have you been on dopamine agonists - pramipexole (Mirapex), ropinirole (Requip) or rotigotine (Neupro)?
What other medications - for other conditions - are you on, as many can trigger or exacerbate RLS.
Your profile mentions iron deficiency anaemia, and iron levels - particularly serum ferritin - can be an important factor in RLS. Have you had a recent full panel iron test and what were the results?
Oh gosh. I’ve had RLS since I was 14. It has always been severe. I am on Pramipexole currently 0.5 every am and bedtime. I’m also on gabapentin for years, 600 mg. I’ve tried requip, a long time ago.. I started seeing an integrative doctor because I have so many things going on. I actually found out I have MTHFR c677t homozygous. Could explain a lot of my problems. I have seen a neurologist in the past but we move a lot. I don’t have one here in North Carolina but my pcp has treated me. Now this integrative doctor put me on LDN for joint pain. My hips are a whole different story. Back to. RLS, integrative doctor drew all the labs prior to a follow up on 4/1.
Labs
You have complex issues and need detailed advice from people who have been through similar issues, such as Joolsg and SueJohnson . However, to start:
1. Your serum ferritin and percentage saturation at 20.2 and 13% respectively are too low: ideally you need an iron infusion to try to raise ferritin levels to over 100, preferably higher. This may help your RLS: it does for most.
2. The acceptable maximum daily dose of pramipexole for RLS sufferers is 0.5 mg in most patients, and you are on twice that? And also see point 3. (Note: do NOT suddenly reduce pramipexole: you need expert guidance on weaning off *very* slowly over time: hopefully Joolsg or SueJohnson will be along to advise shortly).
3. Pramipexole, ropinirole and rotigotine are no longer recommended for first line treatment of RLS by experts because of augmentation (worsening of RLS, starting earlier and/or spreading to other parts of the body) and possible impulse control disorders. But again, do not suddenly reduce or stop taking pramipexole, or allow your doctor to switch you to rotigotine (Neupro)
4. Gabapentin and pregabalin are recommended for RLS, but will not help much while you are still on pramipexole. The 600mg you are taking is almost certainly too low: most RLS patients require 1200 to 1800 mg of gabapentin daily. But again, don't take any action until you've had advice from Jools or Sue.
5. Having augmented on pramipexole you may need a low dose opioid, such as methadone or buprenorphine.
Unfortunately a lot of doctors, and even neurologists, are not up-to-date on latest RLS research and practice.
Here is a paper about augmentation with dopamine agonists (can also involve impulse control disorders - excessive eating, spending, gambling...) in case you are or have been taking DAs:
rls-uk.org/augmentation-reb...
Here is a paper about other medications to avoid:
Here is a paper about iron therapy:
rls-uk.org/_files/ugd/b0a19...
Do come back here with more information on your condition and treatment for advice from people who have been through similar problems
It’s so bad I almost think it HAS to be something else. PLMD happens during the night/sleep, it’s almost not even like that. And I have RLS so bad it is also during the day. I will go to the links you shared. I know my transferrin level is 13%. I’ve been in the ER for an iron transfusion for a critical level of 6%. So I know it’s currently low.
I note that at least at one time you seem to have been having iron infusions monthly: is that still the case, or are you now only having them infrequently?
We have moved a lot so I have to carry my records with me… when we got here to NC hematology wouldn’t even see me. Because they said my labs were fine. But my pcp ordered one transfusion herself. So I only had one. In the last year…. I can always tell when things are off… mostly because my legs are taking me by the shoulders and shaking me. But when I ask if we can check labs, the answer will usually be, well it was fine last time… last gland I had things were within “normal” levels but that’s not always normal with RLS. I do take magnesium as well. So no, no regular iron transfusions… which I know would help.
Yes, as you've realised, what's 'normal' for others isn't normal for RLS sufferers. The very recent American Academy of Sleep Medicine clinical practice guideline says:
"In all patients with clinically significant RLS, clinicians should regularly test serum iron studies including ferritin and transferrin saturation (calculated from iron and total iron binding capacity). Testing should ideally be administered in the morning avoiding all iron-containing supplements and foods at least 24 hours prior to blood draw. Analysis of iron studies greatly influences the decision to use oral or intravenous (IV) iron treatment. Consensus guidelines, which have not been empirically tested, suggest that supplementation of iron in adults with RLS should be instituted with oral or IV iron if serum ferritin ≤ 75 ng/mL or transferrin saturation < 20%, and only with IV iron if serum ferritin is between 75 and 100 ng/mL. In children, supplementation of iron should be instituted for serum ferritin < 50 ng/mL with oral or IV formulations. These iron supplementation guidelines are different than for the general population"
Curious that your docs have not spotlighted an iron deficiency as the ultimate cause of your RLS and PLMD. I'm 73 - but as a child I had "growing pains" and doctors then treated me for iron deficiency anemia and the growing pains evaporated. Fast forward to my late 60s - severe (and I do mean severe) RLS - virtually no sleep with movement in my legs and arms. Docs had no idea what I had, they gave me muscle relaxants. I eventually had to discover on my own (Johns Hopkins Neurology) that I was iron deficient (why, who knows). Docs offered me DA drugs - but thanks to this forum - I refused. Iron supplements eliminated the severe nature of the RLS in short order - raised my Ferritin level (iron storage protein) from 49 to 105 in 3 months.
I don't mean to imply that a simple pill will "cure" you. Iron in the human body is part of a complex biochemical system intertwined with many bodily processes. It is certainly worth further investigation
I have intestinal metaplasia, caused by autoimmune Atrophic chronic gastritis. I do have an iron deficiency and b12 deficiency.. as I don’t absorb them at all. I do take children’s chewables with iron… as per the hematologist that did see me in VA children’s chewables with iron have a different type of iron and absorbed differently. I do have an iron deficiency anemia diagnosis.
I feel for you… I know that was awful growing up with it. I was 14 when I first remember it. Couldn’t ride in a car, watch tv, sit still. It’s been the last 10 yrs or so that it’s now when I am standing or even in the morning trying to sit and eat. I have had severe RLS too. When I said it was almost like Tourette’s for RLS… I mean that!! Like, my shoulders, arms, hands, legs/just draw up kind of uncontrollably. So frustrating. Debilitating…
All your symptoms are SEVERE drug-induced worsening caused by Pramipexole.Most of us have been in your situation.
As Dr Andy Spector says, there's no RLS as severe as Augmented RLS.
There is nothing else at play here other than medical negligence and incompetence and Augmentation.
You are on a negligently high dose and your doctor is, quite simply, grossly negligent.
He should NEVER have put you on Pramipexole after Ropinirole.
He should have arranged an iron infusion.
So, the only way you stop the severe, all over RLS, is to slowly get off Pramipexole.
As you're taking Low Dose Naltrexone- you won't be able to use opioids to help you through the tough withdrawals.
Read all SueJohnson replies to posts made in the last 2 weeks.
Join rls.org to find a good doctor in your area. You will need a lot of help to get off 1mg Pramipexole.
Start by insisting on an iron infusion.
Then swap to normal release Pramipexole and reduce by half a 0.125mg (0.088) pill every 2 weeks.
You may have to stop LDN so you can be prescribed a low dose opioid like tramadol, codeine or Oxycontin to get you through severe withdrawal symptoms.
But once off Pramipexole, the RLS will revert to what it was like before dopamine agonists.
It will be less severe and disappear from arms, hands etc.
Many of us have RLS completely controlled with gabapentin (SueJohnson), iron infusions or low dose opioids.
Look at Andy Berkowski 's website at
relacs.com
He explains so much and why dopamine agonists are so dangerous.
Many medications cause or trigger RLS. Look at RLS-UK website and 'medications to avoid'. Anti depressants are the main trigger meds. Safe alternatives are trazodone and wellbutrin.
Your bio says you have Pernicious anaemia and thyroid- both of which are linked to RLS.
I also take gabapentin but I’ve always thought the mirapex was the one I could live without. I have a lot of reading to do… if I can keep my eyes open long enough to do so.. can’t sleep, can’t stay awake. I appreciate all the help. It has to come from someone who knows. I know you all know. Absolute misery.
I was actually on trazadone before, but along with the Pramipexole and gabapentin. I take so much medicine I was just trying to remove anything I didn’t need or I didn’t feel was helping me. I do take Wellbutrin/buproprion.
I guarantee that once you are off Pramipexole and the withdrawal has settled- you will be SO glad you did it.I had severe augmentation. It was in my face and I couldn't sit still in the day.
I am now completely free of all RLS symptoms.
Dr Mark Buchfuhrer is clear. 95-98% of RLS patients WILL be symptom free with the RIGHT doctor using the RIGHT tools.
So now find the right doctor.
I gave you advice 9 months ago. healthunlocked.com/rlsuk/po... It still applies.
Since you are in North Carolina I recommend you see Dr. Andrew Spector, - neurologist & sleep medicine at Duke Health 2424 Erwin Rd, Suite 1001 - I also have him at 234 Crooked Creek Pkwy 919-385-3000. He does telehealth for NC residents. He wrote an excellent book you can get on amazon Navigating Life with Restless Leg Syndrome. He is the doctor Joolsg mentioned.
Thank you.
Hi, I’m not sure if this is similar to my experience of RLS but it might help.
I started to get restless at night 3 years ago . Falling asleep for a few seconds and then waking with this feeling of restlessness across my heart it also went down my arms, . It was so bad that I had to get up and walk about. Sleep deprivation caused me to suffer with anxiety and depression. My only relief at night was to have a hot bath often at 3am . I gave up my job as a nurse as I couldn’t manage with the few hours of sleep I was getting. I was put on Pramiprixal but was worried about augmentation. The GP then changed it to Pregabalin. The dose kept going up along with my weight. The restlessness consumed my whole body. I had some tests done at a sleep clinic and they seem to think that RLS would not have affected my whole body the way I had describe . I have mild Sleep apnoea but nothing concerning . They have advised me that augmentation with Pramiprixal will only happen if I was on a high dose and they will monitor it.
I have started to wean myself off Pregabalin and am now on 50 mg at night. I have started Pramiprixal at 8 micrograms which is a very small dose . It has only been a couple of weeks but I feel so much better. Coincidentally my symptoms of restlessness started after I got Covid. This could just be coincidence .
I’m so sorry you had to go through any of this. I also have apnea and I’m non compliant with my bipap. Hard to use that if you can’t lie down and sleep. When I express my extreme excessive daytime sleepiness… which I also know I need iron, I’m just told to wear my bipap… that’s why they say I’m so tired. I don’t think I’ve ever felt it across my heart.. it’s like everywhere that there is a “joint” anything that can bend or draw up. When it’s so bad it’s like I’m walking while everything is drawing up/twitching at the same time. I tried to show someone and I swear I felt like I was doing the dance routine to Michael Jackson’s Thriller. And when it’s so bad I can try to get up and walk or move around but it’s so bad to even attempt to walk while one leg is tensing up/drawing up. Gosh I don’t know. I guess my only hope is to try to wean myself off Pramipexole and insist on an iron transfusion. I can’t make them though and I’m always fighting a battle. I will look up the neurologist here in NC from a previous post/reply. I’m desperate for relief. “Desperate Leg Syndrome”
No, no, no They are wrong! RLS can affect your whole body. Augmentation can happen at any dose and you will soon augment again .
Pregabalin is more likely to cause weight gain than gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
However it won't help you much until you are again off pramipexole so wait to increase it until you are off it again and your symptoms have settled. Reduce by 1/2 a pill every 2 weeks.
Have you gad your ferritin checked?
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Thank you. I believe my ferritin was 20.2. Saturation was 13%. I do take magnesium with my night time meds so I will stop that. Meds:
Pramipexole, gabapentin, magnesium, vit e, baby aspirin, bupropion, lexapro, children’s chewable with iron, levothyroxine, vit a, pre/probiotic, methylation complete. I just started LDN in Jan and just went up to a whole tablet, I think 4 mg, but I am going back down to 1/2 and will stop. Iam also on Wegovy and have used zofran for nausea/vomiting. Rheumatologist put me on hydroxychloroquine and I tried to take it for awhile but it made me so sick I would throw up.. and then feel better. I see the integrative doctor for a follow up on April 1st. I’ve tried compression socks, I have a weighted blanket, might help sometimes, distraction I always try.. last time I tried a hot bath.. got in and out twice.. but I had taken 2 of everything in desperation and fell asleep in a deep tub of water. I woke up and thought I better get out because if I fall asleep for more n 60 seconds I might drown…
Time your medicines so that you take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.
Lexapro which is an SSRI antidepressant and also used for anxiety makes RLS worse for most. You are already taking bupropion which is safe for RLS. If you need it for anxiety buspar is safe - it can take 2 to 4 weeks to work.
Wegovy can make RLS worse for some as it affects electrolyte balance.
I don’t (think) I’ve specifically been tested for any of those except b12 and D3. I have been off and on deficient in D3 and I am b12 def with maybe the lowest being 240 or so. Right now it’s up, like 1000? But hematologist in VA wanted it 2000. I was doing b12 injections until I found out I carry two copies of MTHFR. C677T homozygous. She had me stop injections and start methylation complete. I saw the integrative dr hoping she could look at the big picture . I have a lot going on and I think she can help me.
My goodness you certainly do.
my goodness, these folks here will get you sorted. I’m your neighbor in Georgia. Although I see Dr. Buchfuhrer, I understand there are some good docs around us to help you fix the meds.
I hope! I have always said I’d want to do some medical trial. It’s always been bad.
What meds are you taking. Have you tried Horizant?
I have tried horizant and neupro both. I can’t remember why he had me stop horizant. It may have been insurance that stopped covering it.
I take Pramipexole, gabapentin, magnesium, LDN, levothyroxine, lexapro, bupropion, baby Asa, children’s chewable with iron, vit e, zofran PRN and Wegovy. I think that’s all.
My RLS is all in my joints, too. Knees, hips, sometimes shoulder but I’ve never related to the ‘tingly, bugs crawling’ sensation people describe. I’m going through a horribly rough patch while weaning off Ropinirole. I haven’t slept well in over a week. I feel your pain.
I know people have varying degrees of RLS, it is awful. I’ve never gone a whole week without sleep, but 3 days when I was pregnant with my youngest. Oh man being pregnant was over the top.
I’ve had RLS since I was a teenager (in the old days — mid-70s) I couldn’t go to a movie without getting up and walking around several times. Of course I didn’t know what it was, I thought it was from messing up my knees being on the volleyball team for years. It turns out, I don’t have any cartilage in my knees and that’s where the majority of my RLS affects me. Involuntary kicking of my legs is double torture. I dont recall any issues while I was pregnant, that must have been rough. 🫤
Hopefully with all the amazing help here, referrals and information, but to mention a wonderful amount of support, you can figure out this puzzle and get some relief. 🤞🏼
I have never understood the “coca cola” in the veins description. I was a nurse in a nursing home at I had one little lady who called it a “supreme annoyance “ I thought that was at least mostly right! She was one of those soap in the foot of the bed gals. She swore by it but also still had problems!
and my husband never understands why I can’t sit and play games with friends… or go to a movie with him. Once on a flight to Vegas… I thought drinking a bloody Maria (tequila not vodka) omg. I was in a window seat, couldn’t move but my body was insisting on it.. I was actually crying…. My husband was in the aisle seat and someone between us.. he looked over and saw the tears and knew what was going on. My mom and sister had mild RLS. Not as bad as I do, but have it.
When you can’t sleep because you’re so tired and you’re so tired because you can’t sleep. It’s a total feeling of helplessness.
I highly recommend Helmenthic therapy and in the interim if you are able to take an opioid buprenorphine is best but not always easily available
My might like to Read my posts , I know people doing helmenthic therapy who have had no RLS for 6 years
Some were trying it for other things and found that it stopped their RLS
It’s certainly worth looking into
I will read about it. Thank you.
oh man! I looked into it! Not sure I could do that!! But I’ll keep reading..
I read the article. I guess I don’t totally understand the science of it but don’t animals get hookworms/roundworms? Once they’re in your body doing their business.. how/ when do you get to give them their walking papers?
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