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People who have had Rls for a long ti... - Restless Legs Syn...
People who have had Rls for a long time, how how has your life progressed and how have your symptoms changed over time?
32 Replies
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Until I got onto opiates, my life was completely bound up with the ingredients in my food. I was afraid to eat out, have alcohol and even go on holidays.
My life now is totally changed-- I hardly give a thought to what I eat, although , for health reasons , I avoid most processed foods.
But I can now eat a Crunchy bar, have a tasty salty rasher without worrying that I'll be crawling the walls all night long.
Bliss.🤪🤩
• in reply toMadlegs1
Do opiates have any nasty side effects.Plus another question if you don't mind answering. I have rls during the day not only at night .Is that normal?
Joolsg• in reply to
For some people yes. Are you taking any meds, including any OTC meds like cough syrup or anti histamines?
• in reply toJoolsg
Nope.Just supplements like magnesium and vitamin c.
Joolsg• in reply to
Have you had blood tests? Raising serum ferritin can help 50% of sufferers- in some cases it can get rid of it completely. Levels need to be above 100, preferably 350.
• in reply toJoolsg
Yes I have.I don't remember the values or if the ferritin got tested but if it did it wasn't too high or low because the only things which were out of the ordinary were iron(which was quite high ) and magnesium which (was low).Will definitely check it after the lock down ends.I want you to have a great day and let you know that you have made me a lot happier at the end of mine with your help.(Sorry if this sounds chummy but its true) 😁
Madlegs1• in reply to
Opiates side effects can include- short term -- itchyness, insomnia and constipation.
Long term there may be issues of tolerance and addiction and various others.
In your case of 24 hr rls-- it sounds like some sort of augmentation or continuous triggering.
We would need a lot more information.
• in reply toMadlegs1
Thanks for the answer.From what I have read I don't think it's augmentation because i don't take any serious level meds that could cause it(could you tell me if augmentation is possible on it's own) .I believe that continuous triggers are more possible and I believe its caused by anxiety (i mainly suspect that because it feel it through out most of the day) sugar and carbs .
• in reply to
RLS generally starts in the legs, hence the name. Some people do get RLS in other parts of the body. However, augmentation is not just about it spreading to other parts of the body and strictly speaking it is caused by taking either L Dopa, a dopamine agonist for months or years or Tramadol.
Really then, if you've never taken any of these, which you didn't previously mention, then if you have RLS in other parts of the body, it is just RLS, not augmentation.
Also, your later reply in your previous post does cast some doubt on whether you have RLS or not. I've experienced symptoms in other parts of the body e.g. arms, shoulders, neck and abdomen. However, it's always been those parts AND my legs, not just those parts without the legs.
RLS symptoms also generally start spontaneously due to keeping still and it doesn't tend to make any great difference whatever position you're in.
I still think the neurologist may be wrong to say your symptoms were due to lack of movement as a result of lockdown. If you find lying in a certain position e.g. on your arm, brings on symptoms in your shoulder this sounds more like a nerve problem it's also possible that due to stress you're suffering health anxiety.
Not surprising, I imagine there's a lot more people than usual suffering health anxiety at the moment. The oither day my wife said her eye felt like it had sand in it, it was dry. She started thinking about a friend of hers who had eye cancer. She quite often gets bitten by bugs, yesterday she said one of the bites was quite red and she thought that whatever had bitten her had bitten someone with covid 19 previously and had now bitten er!
Health anxiety tends to be an exaggerated misinterpretation of what might be a fairly "normal" sensation. Sometimes stress symptoms themselves can be misinterpreted, causing anxiety. If you focus your attention on such things, they do appear to become worse.
• in reply toMadlegs1
I also sleep on my arms (more precisely my shoulders).I do it to raise my pillow because it's really slim.Could that have something to do with the rls sensations in my shoulders?
6220• in reply to
Opiates do have a lot of nasty side effects and they stop working after a while...rls during the day normal everyone is different i use ti get it day and night... i will refer you to my last post about using canibus saved me.
lorrinet• in reply to
Constipation. Eat plenty of fruit and veg to deal with that, also liquorice (though not too much as it can give you high blood pressure, as happened with me). I've been on opiates for the best part of 20 years - I would have topped myself without them.
Another thing is, if you're going for surgery you must ensure the medical staff know you take opiates. I had a minor procedure recently and woke half-way through it, which was alarming. The doctor apologised for not having noticed it in my notes.
• in reply to
They do not have any side effects for me at all. They may be for other people. As an addict (compulsive eating disorder, now down 110 lbs and in remission thanks to a 12-step program), I was very concerned about addiction. I have never felt high, wanted to move on to other drugs or felt tired or hung over. It is/was extremely rare that I would exceed the prescribed dose unless the RLS was bonkers and I did have my physician's permission to go over within reason on those rare occasions when it was out-of-control.
I am able to stop the oxycodone for breakthrough RLS episodes when those episodes stopped. No withdrawal symptoms or anything else nefarious with stopping.
There is also data published out there that people with RLS are much less likely to abuse opiates. My physician has documented the issues well and stated that if the FDA or my HMO came down on him about my use of methadone and oxycodone, he would be able to justify it without any problem.
Use of opiates can be an issue. Another member of the same 12-step program I am in for my eating disorder was telling me that all it would take is one oxycodone and all of his problems would disappear. He is severely affected by it and it would be a disaster for him to use them.
I would advise personal caution and scrupulous honesty with the use of opiates. Make sure that you understand there is a potential for addiction. Monitor for subtle increases in use. Discuss issues with family, physician, and pharmacist. Give them permission to question you about your use or any problems that they may see. My husband knows that he may ask me anything about my use of opiates without any defensiveness on my part.
As noted by others, constipation can be an issue. I take a stool softener (generic Colace) at night before I go to bed and every morning, I have a capful of Miralax or one of its generic equivalents in my orange juice. My physician told me it was fine to take daily. I also have a backup supply of the prescription drug Linzess which is designed for treatment of opiate-related constipation. Once you get a handle on the constipation meds, it should be easy sailing. If you adjust your opiates, or have to take more than usual for a nasty RLS sequence, you may need to refine your constipation medication use.
Hope this helps.
Jerold
Hello I’ve had rls for years tried everything remedy out there..2 years ago it started getting real bad getting 2 hours sleep a night.. out desperation i tried canibus.. haven’t looked back im getting 9 hours sleep a night, i use a strain used by Parkinson sufferers... it’s brilliant.. i now grow my own meds , not a cure but my god ive got my life back..
It works... this plant has been demonized for far to long.. do with this information what you will.. 🙏
For 14 years I was on Ropinirole and life was bliss BUT it then became a living hell- symptoms 24/7 and it moved to my arms, back and my face. It was augmentation so had to get off Ropinirole and find alternative meds.
I’m now on OxyContin 25mg a day and 75- 100mg of pregabalin.
I still get woken up 5 nights a week with RLS but it’s mild and I can get back to sleep within 30-40 mins.
The Ropinirole seems to have caused permanent damage to my dopamine receptors so I will always have RLS nightly but I can manage to get about 7 hours sleep in a 24 hour period. I would love to sleep for more than 3 hours in one go but....
At least I no longer get it in the day so I can travel by car, plane and go to the cinema without any leg issues.
I've had it from infancy and it has almost destroyed my life on a number of occasions.
From childhood poor sleep left me unable to concentrate at school. Numerous visits to Drs as a child having to pay for appointments only to be told time and time again that the agony and moving was 'growing pains.' So there was the financial and emotional stress of it on my folks.
I had girlfriends break up with me as they couldn't share a bed, well they could but they seemed to take umbrage at the nightly kickings and inability to get sleep due to the PLMD that came along with the RLS,
I've had to avoid desk jobs due to the constant 'jiggling' and need to move - the joys of having it through the day too, but that's OK as I could never focus well enough at school to do well enough to get a desk job.
I eventually found my dream job only to have to get adjustments made to accommodate my moving however due to RLS I've lost my job (well it was M.E. but I could have coped with that had I been able to catch a couple of hours unbroken sleep and the ability to rest).
I have spent too many nights hoping, wishing and even praying for death to end the pain that I have lost count. I bought enough on thienodiazepine to kill myself but thankfully never got the nerve up to do it.
I took drugs that made me think I was going mad and spent too many times arguing with Drs that not everyone who took an opiate became a mainlining heroin user in a week and that there was indeed a difference in dependence and addiction - that was long after getting a f**king Dr to take the condition seriously enough to prescribe something.
I have spent the wealth of a small island nation in vitamins and minerals and treatments to help - the only saving grace is I never bought the soap!!!
I've had to pass up many holidays and functions as I could not get my body under control and lost the opportunity to get on a really expensive course for free because I was going through a particularly bad and long lasting patch.
I went from very painful legs as a child to constant movement in my legs and kicking at night to all over body spasms, discomfort and pain ranging from 3 or 4 hours a night to 20 + hours a day over almost 50 years.
Thankfully now, between a god send of a Dr, this site and my own ingenuity I manage to spend the majority of my nights pain and restlessness free, unfortunately majority is not all but better than few.
I am getting more and more of a handle on the blasted condition and I will die with a peaceful body by hook or by crook
• in reply to
God that sounds awful.I am happy you found a way to sort of deal with it.
Peoples experience of RLS over their life can be very different.
Some people have an inherited tendency to suffer the condition to varying degrees and it then only requires something to "trigger" it. This may be called idiopathic (or primary) RLS. For others, they may not have the same inherited tendency, but it is caused by some other condition. This may be called secondary RLS.
Idiopathic RLS can start when someone's quite young, but not necessarily. It also depends what triggers they're exposed to. There is no "cure" for this kind of RLS, it's constitutional. It does tend to get worse as you get older
Secondary RLS tends to start later in life, but significantly it's connected to some underlying conditon of which there are various. In some cases, if the underlying condition is reversible, then the RLS is cured. However, some of these underlying conditions are themselves irreversible, so the effect's the same.
RLS is also very variable in severity. There may be a lot of people who have it, who never pay it much attention. There may be some that don't even know they have it.
About 80% of RLS sufferers also have Periodic Limb Movement Disorder (PLMD). This consists of involuntary leg movements that mainly occur when you're asleep. They don't necessarily wake you up and you may not even know you have them.
My RLS didnt really come to my attention until I was in my 30s. It actually started as PLMD, my wife told nme I was kicking her. I thought she was making it up.
I then had mild symptoms for decades without seeking treatment.
In my late fifties I had a course of a SSRI antidpressant, followed by another type of antidepressant which triggered severe RLS. My main problem was a more or less total lack of sleep. I was diagnosed as having idiopathic RLS.
I was prescribed a large dose of a dopamine agonist without any warnings or explanations. It was a wonderful relief. However after years it failed to work and I suffered augmentation for several years. I've since found out a lot more about RLS, weaned off the agonist and am now fortunate enough to have very good symptom control by taking a relatively small amount of an alternative medicine.
My most bothersome symptom has always been insomnia, something I've suffered from since being a child.
I've been very lucky, I suppose. I've had RLS most of my life, but most of the time it's been relatively mild. It was only after being mis-prescribed antidepressants, then dopamine agonist that I had a bad ten years.
To put it into perspective, RLS has been a problem for me, but like most people and especially as you get older, it is just another problem. I have and have had worse!
Hey there. I can speak to this. Sorry this is so long, but I wanted to share my journey with this misunderstood disease. I may jump around a bit since I am trying to recall a loooong experience with this disease and treatment.
I have had RLS since I was in my 20;s but possibly since I was a teenager. My brother and I used to talk about having to move our legs when I was in high school although I do not exactly remember what it was about. I just had occasional twinges of it until early adulthood.
I developed it in earnest when I was 24. I am 66 now. I remember thinking WTF is the matter with my legs as I was trying to go to sleep. I thought I was mentally ill. I was telling a neurologist at work about it (I was a critical care nurse) and made an appointment with her. She suggested Klonopin. I had just going through a treatment program for an eating disorder and considered myself an addict in the truest sense of the word with my eating disorder, She changed it to Sinemet which helped for a while then it sort of went lessened and was just a minor annoyance for several years. I went off the Sinemet
It began to become bothersome again in the early 90's. I went a pulmonologist who was branching out into a new field called sleep medicine. He did a sleep test and said my legs were moving all night and prescribed Restoril which was a definite cure at that time. I stayed on it for several years.
I started having breakthrough RLS again. I had I went to another sleep medicine doctor (my insurance changed) and they started me on Requip. Did not do a lot for me.
One night, when my husband was out of town, I had the mother of all recurrences. I could not stop moving. It was like I had the jelly-legs jinx from Harry Potter. I also had it in my arms for the first time, I drove to the ER I worked at. They started me on Valium (felt logy on it and was afraid of it from my addictive personality so I only took a couple of doses) and Oxycodone. The oxycodone worked well, did not make me feel intoxicated nor did it trigger my addictive nature, My sleep medicine guy continued it and I maintained on the lowest doses that did the job.
I had reached some "zen" with the RLS in the legs, but having it in the arms was and still is horrible.
I was working somewhere else and had to go to a different sleep doctor with my insurance. They did another sleep test which showed sleep apnea (I was 5'6" and had ballooned back to 200 lbs with my eating disorder. ) I started on CPAP and the RLS lessened a bit.
This doctor did not treat the RLS, only the sleep apnea so I had to find a neurologist. I was talking to a coworker and she suggested my current doctor. He was the first person that ever truly listened to me and I was so relieved that I cried in the office. We tried a number of thing including Klonopin with the oxycodone. I found out that Klonopin put that portion of my brain to sleep that controls anger and had a couple of horrible days where I had "rage reactions" to minor events. My husband talked to my doctor and he saw me right away. This is an uncommon, but not unheard of side effect.
He continued the oxycodone and we tried a number of different medication including Neupro patches, Gabapentin in all its forms, and several others. I had an unpleasant reaction to the Neupro patches. He bumped it up one increment (I do not remember if it was grams or what. This is a bit embarrassing but we are all adults here. I developed a porn addiction out of the clear blue sky and had trouble leaving the house for a couple of days. This time I recognized that something was out of character for me and made an emergency appointment. Both of us do have a sense of humor and thought it was humorous that I went from 3 to 4 and I developed this (big guy at 250, while he has "little old ladies" that take 15 with their Parkinson's with no problem. Backed it back to 2mg and the addictive behavior disappeared as quickly as it came although the RLS increased again.
All of my life, I had always felt achy and in pain. I thought it was normal for my fingers to hurt to bend them or to wake up tired and foggy in the mornings. During this time, I came across a starter pack of Savella at work. I read about it and the symptoms of fibromyalgia. I took this information back to my primary physician who told me I could not have fibromyalgia because I was a male. She did however do the physical test and after she was done said that I showed the symptoms of fibromyalgia. She them joked with me that it was probably because I was a gay man (we both had weird senses of humor). Within 4 days of starting that drug. I felt better than I had ever felt in my life. and continue to take it.
She sent me to a doctor that also had this disorder. He told me that I needed to get the RLS under control and started me on Methadone 10mg twice a day. My RLS completely disappeared! I could not believe it. I hd a twinge or two of it but it was basically gone. No side effects, unpleasant feelings, feelings like I needed to increase the dose or misuse it, I stopped the oxycodone. I had read that people with RLS are not nearly as likely to have addiction problems from opiates and I can attest to that. I always took the lowest doses to treat my symptoms, never got "high" and was able to stop and start them with no withdrawal issues.
This doctor was brilliant as he explained everything to me and understood where I was coming from., but had some office management issues that were totally unacceptable to me. I would have a 10:00 am appointment and he did not see me until 5:00 pm. I could hear him wasting hours talking to his buddies, going out for 2 hour lunches and fiddling around. The last time I went, a friend of his from out of town came in. they chatted for a couple hours and then he mentioned he needed a DOT physical. He said he could do that right now and spent another hour on that. It was now 4:00 PM and I had a 10:00 AM appointment and still had not been seen. His office staff brought their toddlers to work and they ran amok in the office with them yelling at them all the time. The office staff also was terrible about following up with his orders and I never did get some lab work done that was ordered on my first visit.
After that 3rd visit, I had had enough. I told my primary physician what the issue was and she apologized profusely. I went back to the neurologist I liked before. I explained to him what had gone on. He had no trouble continuing the methadone and we also started to deal with peripheral neuropathy which was in addition to the RLS in my arms and legs (also in my face and back a couple of times). Imagine standing in an inch of boiling water and having my fingers plunged into this water as well. It was not every day but often enough.
A few years later and 2.5 years ago, I started having trouble with falling asleep while I drove. I always fall asleep as a passenger but never had trouble driving. I had left nursing earlier as I did not like the way we treated patients like an "ATM cash machine" and became a process server (the you've been served" guy). My neighbor asked me to help him out with subpoenas and I loved the work. I was good at it and enjoyed being out of an office. Got certified and eventually got my own business but was bedeviled with falling asleep while driving. After two accidents (only my car) two days in a row, I realized that I was no longer safe on the road. I was afraid that I would kill myself or someone else. I dissolved my business immediately and I went on social security at 64. I had no changes in medications that could have caused this.
I continued the oxycodone for breakthrough RLS in addition to the methadone. Again, it was very low dose and I never increased the amounts prescribed. I did begin to have more RLS and peripheral neuropathy gradually over the last two years. Last month, we upped the methadone to 15 mg twice a day with only rare breakthrough. Again I stopped the oxycodone with only minor twinges of RLS.
That has been my RLS journey. I am fortunate that my husband of 43 years understands and has been very supportive. He gets an occasional bout of RLS maybe once a month or so. He asked me how I put up with it day in and day out. I have a philosophy that I heard from a cancer patient years ago. "What cannot be cured, must be endured". I have tried to follow this philosophy. My husband is aware of what an issue this is for me. He has always advocated on my behalf to make sure my RLS is treated seriously when I have been in the hospital. I wear a med alert bracelet with allergies and the statement "Severe RLS in arms and legs - may be mistaken for agitated behavior"
Best to you out there. If you are not happy with your treatment of a physician disses you about your RLS - find someone else.
"We are all good people with a horrid disease and we deserve to be treated with competence, dignity and respect."
• in reply to
This is very inspirational to me personally .Being a 17 year old teen who MAY (I say may because my neurologist hasn't said I have it yet ) have a very mild form of it I read up on a lot of stories of people who have it and say it's terrible.My heart sank to my stomach because I thought that I wouldn't be able to achieve my dreams because of it but every now and then I read stories like yours that really cheer me up😁.Do you know if your RLS is triggered by anything btw.
Thank you - I was afraid it was too long. I am glad it touched you. My understanding is that it has something to do with a malfunction in the iron absorption of the substantia nigra in the brain. The substantia nigra is a basal ganglia structure located in the midbrain that plays an important role in pleasure-reward and movement. This was the reason the drug increase to treat the dopamine triggered a compulsive obsessive disorder and I had to back off it. I believe that this is the area affected in Parkinson's as well. It is telling the cerebral-spinal fluid that does not need iron, when in fact its iron level is low. Low iron levels mess up the dopamine pathways and RLS happens. This is my understanding, RLS begins in the brain.
I take 325 mg of iron twice daily along with 500 mg of Vitamin C which helps the body in iron absorption just to keep a high amount of ferritin (which is different from a high iron level.) I am also a lacto-ova vegetarian.
Hopes this helps. I would not be discouraged. There has been a tremendous amount of research and medications out there that were not there 10 years ago. I may live to see a cure for it. You most likely will.
It only seems to start off at night Im finding now - its not so bad during the day I find
Had RLS most my life and would say deffo couldn't call it living more like a living hell sleeping roughly 6hrs a week sometimes less so far not found owt that works for me tried everything so far ggrr my neuro put that its due to my back hmm ermm didn't have a bad back when i was younger plus my sister and daughter has it neuro dr's know nothing dr's know nothing just have get on with life best i know how although sometimes wonder why .
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