I just wanted to find out if anyone can relate to my symptoms.
About 13 months ago, I received an infusion of iron sucrose.
Before then, I was dealing with RLS 24/7. I felt like I was vibrating all the time, sleep was horrible. I stopped DA's cold turkey, because... about 6 months? earlier.
I did oral supplement during the year and I just got tested yesterday. The results may take awhile I am told.
So, how am I doing now?
The feeling of being plugged into an electrical outlet is still there every night when I get into bed. The intensity is way down. I know that if I let the feelings run, my RLS can get bad. So I try to breath and work through it. Yes, I tap and fidget almost every night for at least 10 to 20 minutes. Some nights, and lately more frequently I have to get out of bed.
First, I also get involuntary jerks now. Sure of course in my legs, my kicks and stuff and mostly quick and really fast. I get quick jerks in my shoulders and arms. However, I also get jerks in my abdomen that are intense, completely out of nowhere and completely involuntary. I will be laying in bed with no RLS symptoms. Falling asleep quite nicely and WHAM. If I am laying on my side, I will do an on my side sit up, without warning and instantaneously. If I am laying on my back, which I no longer do, I will do a sit up with out bracing my neck, this is NOT a good thing.
Second, sometimes these jerks become intense contractions. Not cramps but contractions. This is really hard to explain, because it is hard for me to understand. It is like the default is to contract, i have to tell my stomach to stop contracting and even then it is difficult. These stomach contractions more than anything has gotten me out of bed. The contractions even hurt physically a couple nights ago I walked around for 20 minutes for the pain to go away, it didn't. The next morning I was still a bit sore. Again, this is not a cramp. Trust me, I know cramps. Cramps are much more painful and I have no control over them.
Finally, does anyone feel the electricity/buzzing/vibrating stop. Almost every night. I have to start on my own. Sometimes I go to the hard floor with a blanket, it seems to help. Anyway, I feel the buzzing stop, then I can hug my wife. It started with the Gabapentin. At first it was a strongly feeling of flushing or washing in my hands and extremities. I then knew the rest of the night would be ok, unless there was a loud noise or I had to get out of bed. The feeling still happens but it less defined. I just have a feeling it is gone. Not 100% accurate, but it is significantly less.
So does anyone get jerks, contractions AND feel RLS turn off or at least turn down?
BTW, I know a good Neurologist can help. Finding a good Neurologist has been difficult.
Regards,
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The muscle contractions can cause "spasms" where the contraction gets locked. It's not, as you say, the same as cramp and it can leave the muscle sore.
Thanks Manerva, you have mentioned the jerk and abdomen stuff before. I think we may be the only ones. The contractions too? It so weird, how many people have to have the conversation with themselves. "Are you doing this on purpose?".
If the iron didn't help so much, I would be positive I am losing my mind.
I've come across quite a few folks who write about "jerking", "twitching" "kicking", "cramps", "spasms", "involuntary movements", etc. I think we all use different words maybe, but they amount to the same thing.
I lost my mind years ago. I gave up looking for it.
You’re not alone. I sometimes deliberately stay still while lying on the sofa & during an RLS attack my legs will jerk violently. I took a video of it. I too will sometimes get wave like contractions in my arms & abdomen. I think it’s very common in severe RLS even when you’re off dopamine agonists and taking low dose opioids.
So are you saying it’s better to be in low dose opioids than ropinole or gabapentin? I take tramadol now and seems to help a lot. While my new relief with potassium citrate is still working well, I believe Manerva was right to say I was augmenting off the tiny (.25 then .25 + half) ropinole dose I’d been taking.
It depends on how you respond/react to gabapentin or pregabalin. Some people find pregabalin completely controls their RLS. Others find low dose opioids work better. It’s a case of trial and error after dopamine agonists have caused augmentation.
There are currently trials of a new drug which dampens down the D1 dopamine receptor to prevent symptoms of Augmentation on DAs. If it works, that would be the Holy Grail of RLS treatment.
You take potassium citrate for RLS? How did you find out that this was something to try for RLS relief? How much do you take, what strength, and how long it did take to start working and how long have you been taking it? I am very interested!
So here's a post from health unlocked a year ago and replying to Widebody with Dr. Berg utube of same info. It's working for me still although I'm still taking A .25 ropinole as well:
Use of Potassium Citrate in Restless Leg Syndrome (RLS)
Abstract
It was an incidental finding that potassium citrate is significantly effective
in Restless leg syndrome (RLS). While on use of potassium citrate 1080 mg
equivalent to 10 mEq potassium orally once daily for the prevention of renal
calculus in a patient suffering from renal colic it was incidentally observed that it
significantly relieved the RLS of the patient.
To evaluate the efficacy of potassium citrate in the treatment of RLS, a study was
conducted on 68 patients having moderate to severe RLS. The patients were aged
between 30 and 80.
It was observed that 37 (54.4%) patients were completely relieved from RLS at
the end of 15 days therapy and 20 (29.4%) patients were relieved after one month
and 11 (16.1%) were completely relieved after 45 days therapy.
Extensive methodological study is suggested to further explore the potentiality
of potassium citrate in the treatment of RLS, as very few references could be
searched out which are consistent with the results of the present study
Here's Dr. Berg's utube (I love his podcasts on iphone) on potassium citrate or B1. I will try the B1 as well. Be careful with the potassium citrate use.
I experience violent jerks if I try to stay still during an RLS attack. That’s why I keep my legs moving constantly. Even though I am no longer on dopamine agonists and am on low dose OxyContin I still get RLS every single night badly for up to an hour. I also get the cramping wave like sensations in my trunk and arms. I suspect my very severe RLS is permanent & caused by damaged dopamine receptors after 16 years on high dose Ropinirole.
There have been attempts to rename it Willis Ekbom Disease or WED but most organisations decided against it because WED brings up weddings/venues etc when ‘googled’. But you’re right - it’s a ridiculous name & minimises the horror of the disease.
Whilst I was having my recent iron infusion, I was chatting with the consultant on duty. He asked me to describe to him what augmentation felt like. I went into quite a lot of detail of how awful it was not only physically, but also mentally. I even shed a few tears whilst I was recalling how horrendous it was including the symptoms I experienced whilst withdrawing from ropinirole. I did challenge him, (nicely!) as to why DA's were still being prescribed in the UK for this condition in light of the dreadful long term side effects. He couldn't really give me an answer.
He felt that RLS should be categorised into two conditions. Those who suffered mildly and those, who like me, suffered very severely from it. He thought that to call it RLS trivialised the condition, in particular, for those who were severe suffers. He was a nice chap!
We need more like him. Maybe next time someone is going through Augmentation & withdrawal we could ask them/ their friends/family to video the awful spasms/jerks/lack of sleep as it would definitely help the medical profession realise how traumatic it can be.
I wholeheartedly agree with you. If the medical profession could see for themselves how traumatic the symptoms are, they just might be more sympathetic and be more willing to prescribe the appropriate medication instead of suggesting, what was it? To drink a mug of warm milk! I think I'd be in prison if my GP said that to me! Mind you I do know of a good criminal lawyer! 😂.
My son occasionally has it in his arms. People would look at him like he had two heads if he told them he didn't sleep well because the restless legs syndrome in his arms kept him awake.
I find it interesting in our N=3, 100% are off DA drugs. A couple more things. When the stomach thing happens, for lack of a better word, I grunt. So that's a few hundred grunts a night. Also, I make faces. Yeah, in the dark, I make all sorts of scrunched up faces. I hate this disease.
The spasms or contractions you describe are very familiar to me. These are worse if I try to go back to sleep lying on my side. If they start when I am lying on my back I give up trying to sleep.
Before I started on Ropinerole for my symptoms these are all the symptoms I suffered from. I had the jerks in my arms, legs and shoulders, then occasionally it would be a jerk in my chest/stomach which felt like a scene from Alien! The Ropinerole are working well at the moment but i still suffer with the contractions/ spasms in my legs. It wakes me and when it relaxes pretty much up to my bum is raised in a spasm. My calves often feel like I've ran a marathon. I must admit I had put this down to other neurological problems that I seem to be having ( which I see a neurologist for but no answers yet) but maybe not??
I'm like you, I can dread going to bed as I never know what adventures I'm going to have! 😆
Omg, I am new to Restless limb syndrome, I was diagnosed with pperonial neuropathy years ago but after I turned fifty, I am now recently diagnosed with Restless limb syndrome in both rheumatoid arthritic feet. I also have jerks, stomach and esophageal spasms that have placed me in the hosp for up to ten days at a time, at least 3 times a yearr the past few years. I cant swallow water, food meds when this happens. This is the first correlation that I have completely identified with and now im putting some puzzle pieces together, hope you are following me. I do have Barrattes esophagus, pre cancer cells and two stomach surguries trying to repair whatever the doctors are thinking I need next. I am on oxycodone, tramadol and a new med, Oxcarbazepine, that I have not picked up from the pharmacy yet. Like I said, new to RLS. Anyway , I feel like I have a finger nail in an electrical outlet and am at a low irritating buzzing in my body and maddening in my feet at night along with legs that make me look like I have ADHD. I cant give you any recommendations but I'm so glad you posted your question. I understand what you are trying to describe and Im frightened every night that my jerks, stomach and esophagus will land me in the hospital absolutely freaked out and miserable. Just to be told I am suffering with esophageal spasms and do not piece any of my symptoms together abviosly. My ne med Oxcarbazepine is a seizure med but im told it calms down nerve pathways in the brain and helps sleep. Something I miss so bad! I will follow your post, read all comments and update you on this new medication. I have so many weird symptoms but what you posted sounds so damn familiar I do not feel like I am alone or crazy. I see my pain specialist next week after I start the Oxcarbazepine for a week. Sorry I can't help, just know you are not alone and I will report how I do on the new medication soon. I also was placed in the hosp recently for extreme low potassium level 1.7. This is the worst my symptoms have been and Im also on a effervescent potassium table 2 times a day now. I wonder if this is connected. Sorry if my post is scattered, lack of sleep and just blown away by your post and comments. Thank you so much for sharing! Laura from Seattle WA USA
Hi, just to clarify some things for you which I hope you'll find helpful.
The problems you have with your esophagus and stomach arr entirely unrelated to RLS. These internal organs contain an entirely different type of muscle to that involved with RLS.
The the two types of muscle are controlled by different parts of the nervous system.
Hence RLS has nothing to do with your esophageal or stomach problems.
RLS however can cause spasms in outer abdominal muscles, NOT abdominal organs.
If you're a bit oldet and havepe only recently developed RLS, then it's probably "secondary" RLS possibly caused by low potassium.
Oxcarbazepine is not a recognised treatment for RLS. There are anticonvulsants used, but these are either pregabslin or gabapentin. These are well tried and recommended.
It may be thst you were prescribed the Oxcarbazepine for your esophagus/ stomach, not for RLS.
I had the same thing. I went from restless legs to what i jokingly called dry humping the bed. The jerks were so bad. They could have me laying on my side to pushed over and face in the pillow. My back would cramp and it takes minutes before i could move my body again. Saw neurologist who put me on garberpentin. Just had to increase dose but much improved.
My body also feels like it's plugged into the mains ,it goes all the way up to the base of my skull I also have too pace the floor boards for some kind of releif.
I hesitate to mention this but what the heck. My wife went to the hairdresser the other day and she mentioned that her daughter had severe RLS and that she tried the KATO diet. Her symptoms went away. I know RLS is different for everyone but I do know that diet does play some role in it for most. For what its worth..
Yep - diet clearly helps some people. I have tried them ALL for extended time periods. I was keto/paleo for a year & it certainly keeps you slim but did nothing for my RLS. I also tried low FODMAPS for 6 months & vegan for 9 months.
I have noticed that coffee and moderate alcohol helps my RLS though.
I guess you mean KETO diet. This is a very low carbohydrate diet that causes a build up of ketones. I believe it was originally tried for controlling epilepsy.
Inflammation is a mediating factor in RLS as it interferes with iron metabolism and anything that causes inflammation, particularly of the gut can cause more generalised "sub-clinical" inflammation, i.e. it's asymptomatic. An excessive intake of simple sugars can cause inflammation.
Inflammation of the gut can be caused by different things in different people. Some people are sensitive to gluten, others to lactose, others to oxalates or food additives. There is an assoociation between SIBO (Small Intestinal Bacterial Overgrowth) and RLS.
what ever it is. I am not giving up just yet. My appointment is monday. I have my blood tests from the past 10 years. I intend to put the results into excel and plot this. I think part of the problem is the Doctors don't see the overall trends. Like gee, your ferritin has fallen for two straight years.... AND you have RLS symptoms.... two + two. But no, its gee your ferritin is a normal 30.
Sorry to be so bent lately, I am a bit concerned. I thought I was making progress.
I don't wish to worry you unduly, but a falling haemoglobin could indicate a fairly serious problem. Although there may be a simple explanation. your GP should really investigate it.
Thanks Manerva, I completely understand. My story is a bit long. When I was first diagnosed as anemic and NOT having RLS, ( Yes, Anemia was in my charts and both my Doctor and Neurologist prescribed a DA drug.) When I was first diagnosed as anemic, I had to get a colonoscopy (I was given the 10 year, two thumbs up). Look at that... it was about 10 years ago. I then started oral iron, after six months of over the counter fails, the doctor prescribed liquid ferrous sulfate. When my ferritin hit 200 I was told to stop. Interesting, my ferritin was 7, I started liquid ferrous sulfate my ferritin was 18 and my hemocrit? went above 50% (I will have more accurate data later). But now as my ferritin goes up, the red blood cells go down. This was my first concern. If I drop one more point, I am anemic, then what?
It took about 18 months (IIRC) for my ferritin to go from 200 back to 30, (years ago) RLS started in earnest then. I will be looking at all my blood tests later today. There really should be an AI to pass this information into.
Also, while the benefits of getting my ferritin going from 30 to 200 was fantastic. The gain from 250 - 300 hasn't seen any appreciable improvement. So I will be slowing down on the iron, but still supplementing. (I think). I will be doubling down on Vitamin D.
Then looking for inflammation, I am not fully sure how that is done. I don't know if this matters, but my daily physical activity, yoga, saunas, biking have been crushed since the start of Covid. Yes even the biking events were cancelled. I know I am grasping for straws here.
Thanks for responding. Sorry if I am not explaining things very clearly.
Sorry Manerva, Dumb question time. My testosterone was low... the Doctor wants me to do Injections, he thinks it will help with my anemia. Does that even make sense? I am not lance armstrong and I am turning 60 soon. Thanks!
Thanks Manerva, of all the values, my PSA is fine... so far. I will continue to watch the PSA. Energy would be welcome around here. So I guess it is a go Also, I need to get the Vitamin D up. I looked at all my tests over 10 years, all of the Vitamin D was below normal. It was a rough night, not sure why some nights are good and some are so bad. Not the RLS, just insomnia. I appreciate all your responses. Thanks!
I am in the same boat as all of you as far as the jerking. I've heard some say it's not restless legs syndrome, that it's something else. I believe the body jerks go hand-in-hand with RLS. I've described mine as a belly laugh without the laugh, a sneeze without the sneeze, a deep cough without the cough. I've even wondered what comes first -- the jerk or the split second thought I'm going to jerk. And sometimes when the legs are really going wild they will just fling on their own. I have seen several neurologists and sleep specialists. I have had iron infusions and EEG test. I weened off dopamine drugs back in 2015 because of augmentation. I have tried every imaginable prescription, supplement, and lotion and potions out there. Right now I'm taking Percoset but I think it too is messing with my sleep. I think I finally fell asleep around 4 am last night with being up and down all night long. Restless legs syndrome is so cruel.
Yes- I only ever had RLS in my legs before DAs. Dr Buchfuhrer told me by email he believes that DAs permanently damage the dopamine receptors in the brain which would explain why pregabalin sometimes doesn’t help after augmentation and why we experience weird spasms elsewhere.
Pretty sure it’ll all be clear in a decade after they do more research.
I only had RLS in my legs until I took Tramadol for sciatica. Since weaning off Tramadol over a year and a half ago I have it in my left arm, neck and base of my spine. Recently I’ve started to feel it in my forehead area, would you believe! So maybe it’s not just DAs that can cause permanent damage to the dopamine receptors in the brain and we need to be wary of Tramadol too. It’s okay while you’re taking it so you wouldn’t know the damage has been done until you try to stop. I’m on Pregabalin and even that’s not working properly anymore.
I was taking Mirapex for quite a few years and it seemed to work fairly good until I injured my knee and the doctor prescribed Tramadol. Augmentation set in big time. Even when I quit the Tramadol I still had severe restless legs syndrome. In 2015, I detoxed off the Mirapex. It was absolutely horrible. The sensations in my legs and hips were like something out of a horror movie.
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Also, I make faces. Yeah, in the dark, I make all sorts of scrunched up faces. I hate this disease.
and I am turning 60 soon. Thanks!
hands shaking,and body gets tense
Does this sound like RLS to those experienced?
What helps you when you have a RLS attack?
Does this sound like RLS?
Piriformous stretching
