I had RLS (in my shins) as a teen-early 20s, but it was usually a sign of being tired and going to bed was enough. Eventually it got worse, moved up to my thighs and would not always go away with sleep. The last 3 years became unbearable. I would have it deep in my hips, up my spine and in my arms. It would start up whenever I was remotely at rest -- at my desk, watching TV, reading, meditating, during massages, in the dentist chair.
I've tried many many things-- multiple types of magnesium, I am active (daily walks/pilates), I practice yoga and meditation regularly. I do cold plunges and hot baths with salts. I use massage tools, weighted blankets, compression socks. I found antihistamines, muscle relaxers and melatonin make it worse. CBD does nothing, actual THC / getting high takes the edge off but not for long. Tried taking high quality iron for 3+ months. I eat fairly healthy, dont eat late at night, I watch my electrolytes.
I had my bloodwork done last summer, Iron was 21.2 umol/L, transferrin was 2.03 g/L, Transferrin Saturation 0.42(no unit). My B12 is fine. I have been on prescription vitamin D for 6 months.
Doctor put me on 0.25mg of pramipexole 6 months ago..... I finally started getting a lot more sleep and can mostly relax during the day. But I am experiencing mild-moderate symptoms in the evenings (in my left hip only) when I try to deeply wind down with a meditation, breathing exercises etc. If I stay active until I go to sleep its okay (and if I smoke a joint).. but I really need morw mindfulness and quiet time for my mental health.
I took pregabalin a few years ago for anxiety... I really didn't like that drug...... getting off it was a nightmare.
Any further suggestions?
Anyone recognize a link with mindfulness and activated parasympahtic nervous system? Why is it my symptoms flare up when I induce deep relaxation?
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Catsmeow13
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You really don't want to be on pramipexole. You will eventually suffer from augmentation and in fact you are starting now since you are starting to get symptoms. Getting off it when that happens can be hell. I strongly suggest you come off it now while you haven't been on it long and haven't gotten up to the maximum dose.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.
To come off pramipexole, reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Although you didn't like the side effects on pregabalin I would try gabapentin as the side effects that bother one on pregabalin may not bother you on gabapentin and if they do you can come off it without withdrawal effects by reducing by 100 mg every 2 weeks. (You should have reduced the pregabalin by 25 mg every 2 weeks)
On the gabapentin the beginning dose is usually 300 mg gabapentin . Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason
Have you had your ferritin checked? You don't mention it in your blood tests. If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin number. If your ferritin is less than 100 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
You have certainly tried many things but let me give my usual help/hurt advice which includes some of them.
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.
Cat, are you on any anti-depressants like an SSRI? Or hormonal birth control? Or a PPI? These drugs can make the symptoms of RLS much worse than they have to be.
I think you’re on the right track. Just go as low as you can for now with the SSRI. I bet that’s 90% of your worsened symptoms pre-DA.
What time of day were you taking the iron? You gotta take it at night about two hours before bed on an empty stomach. Preferably about 56mg of ferrous bisglycinate. Some, possibly all, of your symptoms should go in about one hours time…for one night.
On the bright side, the SSRI has not worsened the RLS itself - which is “lousy dopamine receptors.” And may even have countered some of the damaging effects of the DA - a dopamine agonist. The SSRI is a dopamine antagonist. The direct opposite.
Talk to your doctor about alternatives to the SSRI. There aren’t a whole lot of choices I know, but there are some out there. Getting off the Prami should be a lot easier if you’re off (or on a very low dose). My recommendation is to have a low dose opiate like codeine waiting in the wings as you get down to that last little bit of the DA.
You shouldn’t need any long term drugs like Gaba once you’re off (or low) the SSRI. Any minor RLS should be well covered by ferrous bisglycinate.
Contained in this thread is my 600 page description of RLS (at least it seems that long 🙄). Good luck and keep us posted.
I am always shocked when a new, young member posts that a doctor has prescribed a dopamine agonist in the last 6 years.The evidence is readily available. These drugs are dangerous and are now relegated to 'end of life scenarios' because of the very high rates of drug-induced worsening ( augmentation) and Impulse Control Disorder (gambling etc).
Your blood tests don't show serum ferritin which is very important for RLS. Your serum iron and saturation are low and indicate you need iron therapy.
RLS-UK runs this forum and their website has a withdrawal schedule and an iron therapy page under 'useful resources'.
Show them to your doctor and tell him to read the Mayo Algorithm and the new AASM guidance.
Follow SueJohnson advice and get off Pramipexole now.
You can probably resolve your RLS with iron therapy.
First, I concur with the dopamine agonist. You sound like a contender for augmentation. You don’t want to go there! If you don’t like pregabalin then an opioid such as Buprenorphine is the only alternative. I also concur that hormonal treatments can cause it.
Second, it’s in the deep relaxed state that RLS usually kicks off. Meditation can be such a state. It’s technically called the hypnagogic sleep state and it tends to be paradoxical so it’s not too surprising that the counter urge to be vigilant appears just when your body wants to go into sleep mode. My worst RLS usually comes when I’m the sleepiest. We know that an increase in serotonin and melatonin sparks RLS but there could be more to the story. Personally I know I’m sensitive to glycine, which may be part of the process during which the body locks its motor reflexes so we don’t act out our dreams.
I have noticed the link too. It is rather maddening that the moment you start to relax is what brings on the torture.
I really don’t even know how to explain this well, but I’m going to try to tell you what I’ve been experiencing and my theory behind it.
I’ve been on a healing journey for the past 5 years. It started after I had a bunch of body work done (similar to Rolfing) to help correct postural and movement issues and pain. This concluded with Covid as the woman doing the work shut down her practice.
I had done a 12 session package with her that pretty much covered my entire body. At the end I was becoming aware that there was still an area of my body that we had not covered and that I realized contained a lot of dysfunction. That was my belly/pelvic area and eventually my whole torso including my ribs.
I started working on my belly myself feeling around and discovering all this knotted and stuck tisuse. It has been a very slow process of gently pressing and holding the spots until the relax, let go and the tissue feels smooth and flowing/moving. I do a lot of somatic type work where I am not just holding the tissue but I and breathing into the area and moving around.
I started having these emotional releases where I would feel intense fear or sadness etc. and I became aware that I had a lot of repressed emotions from a somewhat crappy childhood that I was in complete denial of up to that point. I’ve learned a lot about complex trauma and how we store unprocessed emotions in our bodies. And I unfortunately had a lot of it stored in my body to the point that it was dysfunctional.
Anyway, over the past five years I have worked on my body and made some discoveries which have lead me to my working theroy. That I suffer from C-PTSD and that my core muscles were in a frozen state. They stay tense all the time. This is not something I am aware of on the day to day. It took me feeling them and getting them to start releasing to realize it.
during this process my RLS has changed so much. I have gone from being intolerably bad like you have described, to seeing the link between my soft tissues and RLS. These days my RLS, though not gone yet, is much more quiet. And I can get it to calm down by working on whatever muscles or soft tissues are spasming (not sure that is the right way to describe it) I can also bring on an RLS attack when I mess with some of these areas that are still pretty tense and not ready to release.
So here is my theory on why it gets worse with relaxation. While I am awake and alert my body stays in a level of tenseness. (Not that I am aware of it) and this tenseness is actually holding things in place. the moment I start to relax my body start to release some of the tension. But other areas are stuck tense, and this in turn aggravates my nervous system as some nerves are possibly being pulled or pinched etc. and causes an RLS attack.
when I try to do deep breathing or mediation it can flare up becasue I am trying to get those edeep muscles and tissues to move with my breath and they are spamming in response. as they are not able to release and relax.
Its just a partial working theory. and I am not sure if it's even the whole picture. Or if there are secondary causes too like chemical imbalances in the brain etc. but I know that what I have been doing has been changing things. So I will see where this leads.
So there is my very long and probably not too clear explanation. Lol
I also use weed to take the edge off. it is part of what makes me able to do the work I have been doing, as without it this work is often too intense and triggering.
I really resonate withthis! The body stores trauma in so many ways, I believe in somatic work.. its not easy and requires vulnerability but I think there is power in this. Good luck on your journey, thank you for sharing and inspiring.
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lab work 8 weeks post iron infusion - advice?
RLS, Neuropathy and Flare Ups of lower legs
Treatment of RLS with Pramipexole 
Blood results
Iron Levels 
