I always thought RLS was all about uncontrollable movements. Now I am wondering if a uncomfortable feeling in my thighs, almost painful, is also a form of RLS?
I do get the uncontrollable urge to move my legs but not anywhere near is often as this pain type thing.
Hello Smophie
The principal defining characteristic of RLS is the "urge to move" which is often accompanied by an unpleasant sensation, typically described a "crawling", "weird". "itching", "like millions of ants" etc.
The accepted diagnostic criteria for RLS state that the diagnosis is confirmed if
1 An urge to move is experienced in the legs which may or may not be accompanied by unomfortable and unpleasant sensations in the legs.
2 The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.
3 The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
4 The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.
Involuntary movements isn't usually thought of as a symptom of RLS and doesn't have to occur for the diagnosis to be given.
80% of RLS sufferers also suffer PLMD (Periodic Limb Movement Disorder). The principal defining characteristic of PLMD IS involuntaery movement. However, PLMD in most cases only occurs when you are alseep and many people with PLMD aren't even aware of the movements. PLMD is considered an associated but separate condition.
A very common feature of RLS, not mentioned in the criteria but which oocurs as a result is insomnia, this may be - difficulty in falling asleep (because of symptoms) or early waking, or both.
In addition to the above ctiteria is a fifth criteria i.e. that the occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition.
The "urge to move" is a bit of an ambiguous term and can easily be misinterpreted. There are other conditions which might caise this or a similar symptom which is also called akathisia.
Some people also apply the term to a simple need to move to ease discomfort or nervous restlessness. These aren't the urge to move in the same sense as it's experienced in RLS.
Some people with RLS do experience pain as part of their RLS, but many don't. The ones that do seem to describe it as a deep ache.
Some people experience symptoms in one leg, some in both and usually it's the whole leg, or the lower leg.
Returning to the criteria (all 5), in order for the diagnosis to be confirmed symptoms have to match ALL 5 ctriteria. If they don;t match even one fo them, then it's ptobably not RLS.
In summary
Having the symptoms you describe as an "urge to move" and pains in your thighs is insufficient on their own to say you have RLS.
Whether they are RLS depends on what makes them worse, what makes them better, WHEN they occur and any other health condition you may have.
A possible alternative diagnosis for your symptoms, based solely on the detail you give, is that you may have a neuropathy. As well as having RLS, I also experience symptoms as you describe, but i n my case it is a a known diagnosed spinal neuropathy conflrmed by an MRI.
Depending on what other information you give I may be able to say with more certainty whether you do have RLS or not
Thank you for your reply, you have given a lot of information there. I'm feeling pretty tired right now so I will reply again tomorrow.
Thanks again
I have a feeling that's mainly in my thighs that I find hard to discribe. Its like a pressure just below the skin pr some sprt of low level pain which gets harder to bear the longer it goes on. It is mainly an issue at rest, at the monent, i have it thoughout the day. Heat, movement and massage helps. Although I wouldn't say I have an urge to move, I am very aware that doing so will relieve the symptoms. Stress makes it worse.
Occasionally I will have sensations that require me to move my leg. If I try to ignore it, it builds up and I move my leg involuntary. This is mainly in the evenings when I experience stress
Thanks for your input
It doesn't seem as if your symptoms fit the RLS diagnostic criteria. So I don't think you have RLS.
Although I'm not qualified to offer any alternative, it does sound like a spinal neuropathy.
Posture can affect the pain, if you're sat upright and bent at the hips, e.g. as sat in a chair then a) gravity will be pressing your vertebrae together. b) In addition the affected nerve(s) going down your leg(s) will be stretched. This combination may be affecting a sensory nerve coming from your leg(s). You will feel the pain where the nerve is coming from and it may even feel tender there, but the issue may really be in the spine.
Counterirritants like heat, and massage may relieve the symptoms. Simply put, this is because sensations from counterirritants go along nerves that are faster than pain nerves and get to the spinal chord first and block the pain nerve.
I know it sounds odd, but it is called the "gate control" theory.
Moving may also have an effect because of the change of posture.
Some people do get symptoms during the day, but even so, it is still worse at night. Many people's RLS symptoms are at their worst when falling asleep. This because one of the factors associated with RLS is dopamine, a neurotransmitter. The level of this rises and falls over a 24 hour cycle. The level is at it lowest as you're falling asleep. Or thereabouts.
It's because of this that people with RLS often complain of not being able to get to sleep. It's why many decide to seek medical help because of this.
I suggest you discuss this with your doctor.
This us exactly what I have. Would u describe it as kind of a burning pain like you have been exercising really hard?. I am diagnosed with both RLS and PLMD and I often feel my symptoms don't exactly match those of others. When I am up and moving my pain seems to be ok - but as soon as I lie down or rest (which I have to do often as my legs are SO tired) the pain becomes terrible...like my legs are filled with acid. The twitching (which is not as severe as I have seen in some PLMD patients) can be best described as hundreds of smaller muscular twitches (even in my upper torso). When it is super bad- like at the moment- I get this feeling that my muscles are literally being ripped from the inside (hence the pain). My doctors and specialists all agree with this diagnosis. A sleep study recorded 120movements/hr. I am in a terrible state at the moment, barely able to leave the house or do simple chores and after having tried almost every medication am speaking with a doctor in the U.S.A about my next treatment option.
I will definitely agree to the "deep ache" symptom. Personally I describe it as the feeling you would get if u ran a marathon...uphill... in 40deg heat. I am an ex- P.E teacher (I had to resign from my job due to this disease) and have played sport at a high level. I know the feeling of D.O.MS (delayed onset muscles soreness) after high intensity exercise - but it is like that on steroids! Plus other symtoms which don't necessarily fit into a certain category. Twitching, cramping, crawling ants, spasms, joint pain from continuous flexing of joints (toes, ankles, knees and even hips) and burning. Plus I get it day and night now and in my upper extremities. I have had full body MRI and CT scans which have been inconclusive (although I have had an L5/S1 disc replacement which i often questions has contributed to the severity). This disease has been devastating for me. I have been suicidal on numerous occasions due to sleep deprivation, pain and side effects of medication.
I am really sorry to hear RLS has such a devastating effect on your life. It does sound as if you do have very severe RLS/PLMD.
I hope you got some useful information from shumbah and the doctor in the US can help.
It does sound as if as well as RLS you have some other neurological issue which CT or MRI scans might not necessarily detect.
I'm afraid I have no idea what it feels like to run a marathon. I have never been a physical person. It might sound odd, but I don't live in my body, I live in my head. I don't abuse my body but I don't generally pay it much attention. It generally works OK and doesn't hurt too much.
it seems that unlike a significant number of people I don't equate "fitness" with "health". You do hear of apparently "very fit" people suffering sudden death syndrome as a consquence of their physical activities.
I wonder if your emphasis on the physical has damaged you in some way?
Wondering what you mean with having an emphasis on the physical being damaging ? I have had back surgery and I do wonder if this is intertwined with my RLS/PLMD. M symptoms also emerged significantly with my first pregnancy however I do belive I have had the disorders my whole life - just never knew what it was. I also live in my head- in fact i have had numerous councillors tell me i need to get more in touch with my "body " and get out of my head- but this suxs when your body hurts!
Apologies, I may have expressed my ideas badly.
I was also perhaps being presumptious. I had assumed that having a career in teaching physical activities and apparently running marathons would mean you focus a lot of attention on physical activity. This implies a somatotonic personality.
It isn't intended as a judgement, just an observation.
I've always paid more attention to thoughts and ideas rather than the physical, which I have perhaps neglected. I have a typical cerebrotonic personality.
Both have their good and bad points.
Your counsellor is probably right to advise against being too introspective, if this was what was meant. Being cerebrotonic isn't quite the same thing.
Notwithstanding, whatever your personality, some repetitive physical activities e.g. running, clearly have benefit but can incur accumulative skeletal damage. The repetitive impact which occurs in running can damage knee and hip joints as well as the spine.
Narrowing of the gaps between the vertebrae can cause neuropathy.
This can be a factor in RLS as it can lead to motor nerves being oversensitive, which is a feature of RLS. This might confirm what you suspected, i.e. that back surgery is intertwined.
Again, I am being presumptious i.e. that your back surgery.was because of spinal problems.
The other danger of a lot of prolonged running is that heart muscle becomes stretched and such stretching can interfere with the conduction mechanism of the heart. This can reach a point where the heart just stops contracting - sudden death syndrome.
Nothing to do with RLS!
I have always been an active person, but never been interested in any sport or exercise. Despite this, I have some spinal degeneration leading to at least one compressed nerve and consequent pain and other symptoms.
It does seem that this interacts wuth my RLS symptoms, (which precede rhe neuropathy).
In fact, the only medication I now take for RLS is gabapentin, which I was originally prescribed for the nerve pain. It works for both
because in effect, it desensitises nerves.
I hope this helps.
Dear Nikwat - I am sorry you have had so much trouble with this disease. I know that pain of having to quit a job because of it. After I left my role as an RN who was trained to help detect, prevent and control hospital infections ( I am so glad I am not having to professionally deal with COVID 19 from a professional point of view), I became a process server (for those of you that do not know what this is, I would deliver summons and complaints to people that had legal actions filed against them). I had my own business, was polite and respectful with people and it gave me a chance to use my detective skills. Believe it or not, I thoroughly enjoyed doing it.
The problem was that I spent hours in the car. When I was younger and had a bad night with RLS, I had the reserve to carry on in the morning. As I approached my mid 60's that reserve had diminished to zero. I began to have micro sleeps when I was driving and fugue moments when I did not know where I was on the road or what I was doing because I was so sleep-deprived. One time, I drove across a dangerous intersection here in Tampa and woke up in a parking lot without any knowledge of how I got there. I would also have to stop the car and get out to walk, sometimes on the freeway, because my RLS was so bad
In the space of two days, I had two accidents where I wrecked my vehicle slamming into curbs because I fell asleep. I decided that I was a danger to myself and others and made a decision that I needed to retire right now before I killed myself or, worse yet, someone else. Fortunately, my husband and I were in a financial place where we could do this. I was also suicidal because of the way this disease had impacted my life and what was to come.
I have always been a severely obese man due to a compulsive eating disorder and an addiction to carbohydrates, About 3.5 years ago, I went back to a 12-step group like AA which had been the only thing that had ever worked. Not only have I lost 110 lbs down to a normal weight on my 5'6" frame, but I have learned to take things one day at a time, not spend my life doing "anxiety rehearsals" about what may or may not be coming up for me, and learning "what can't be cured must be endured". It was also at this time that my neurologist put me on methadone for my 24/7 RLS. This has also made a huge difference. Do I still have bad times - yes, but it is better than it was before. My worst day now is better that my best days before,
Today, my husband and I were working outside in the outrageous Florida heat. I made the mistake of being shirtless and got heatsick and sunburned. This always sends my RLS into orbit and had to take some supplemental medicine for my RLS since it is terrible. I do know that this will pass however. I have been distracting myself tonight by working on my model trains and restoring antique railroad signals. These are things I can do standing up which help rather than watching TV or something sedentary.
I guess my point is that with this terrible disease, I am not ready to give up on my life. I am going to have to learn to adapt to it and live life to the fullest that I can.
I think about this a lot. We are all good people with a horrid disease and we deserve to have it managed the best we can so we can live our lives.
Jerold in Citrus Park, FL
Thank you for your kind reply. After speaking with doctors in the U.S I am trying to access buprenorphine here in Australia (then possibily methadone if I can't access it). The problem is that I am having to jump through hoops to access this medication as it is primarily used for drug detox in an drug rehab setting. If i was classified as a drug addict I could easily access it AND the scripts would be subsided by the governemt! So I am basically being punished because I am NOT an addict. It baffles me. My g.p could put me on a controlled release patch with no problems but the form i wish into get it in needs special authority (perhaps because it is not controlled release?) but it is at a lower dose! So I could be put on a patch at a higher dose than I would possibly need. It is mind boggling. I do wish you all the best and hope you are over your harrowing ordeals with driving! I am also so lucky to have a husband who can financially support me. If I didn't I honestly don't know where I would be. On a side note - were u on any dopamine agonist medications when u had issues with compulsive eating? I discovered that I had developed impulse control issues as a side effect of those meds and uncontrollable eating was one! As soon as I went of the DA it stopped.
Thanks for the nice note back. I am not familiar with this drug: buprenorphine. I found a trade name but not a lot of information on it. I would go on line and print copies of all the articles on the use of either buprenorphine or methadone and their use in RLS. The RLS Web Site should be able to help you. If you find any scientific studies, printing the abstracts should be fine.
I had seen my neurologist for years. My GP wanted me to see a sleep medicine/neurologist she knew. Although he was very bright, he had some office issues, making you wait until 4:00 PM for a 10:00 AM appointment ROUTINELY, etc., which were unacceptable. He was the one who started me on methadone and diagnosed me as being a super-metabolizer of oxycodone. I told my GP who was apologetic about the issues and I went back to my original neurologist. I told him what happened and how well it worked and he was happy to continue and manage my methadone. Works well for me. Did have to increase from 10 mg to 15 mg twice a day about 6 months ago because my RLS was progressively getting worse as it is wont to do with age. Never had any side effects such as euphoria or not being able to drive. Just controls the unpleasant feelings in my arms and legs (I get it in my arms as well - another consequence of the progressive nature of RLS)
He told me that he kept detailed notes in case he was audited by the FDA (the USA's Food and Drug Administration which has caused severe problems for legitimate users. He was telling me about cancer patients who could no longer get opiates. I guess Ronald Reagan was correct when he said the 9 scariest words in the American English language are "I'm from the government and I'm here to help!"
As far as the eating disorder, that was a lifelong issue for me since the age of 5 or so, Battled it all my life. The medications may or may not have made it worse, but if so, it was not noticeable as it was so out of control anyway. I have noticed that I had put back on about 30 lbs. over the past year. This occurred when I started Lyrica (pregabalin) for some nerve pain in my legs that was like standing in an inch of boiling water at night. I finally realized that it was increasing my hunger from users of this website and made some adjustments to my eating plan which have helped and I have started to lose 30 lbs again on the way back to my ideal weight.
We are all adults so I will share this. I did develop a compulsive obsessive disorder from Neupro (rotigotine) patches. I was on 3 mg and was increased to 4 mg. I suddenly developed a porn/"self gratification" addiction that I had never had. After 2 days, I recognized that something was seriously amiss and went back to the neurologist. I explained to the neurologist what we going on. Our relationship also include a healthy dose of humor and he both laughed about it. He was commenting on me at 270 lbs. being affected that way on 4 mg while he had little old ladies on 15 mg patches with no issues with compulsive obsessive issue. He decreased me back to 3 mg patches and then we back transitioned to oxycodone as a primary medication to treat the symptoms. I had previously been on it with good results although it only worked for a couple of hours each dose due to my rapid metabolism. The compulsive-obsessive behavior immediately ceased and had not returned. The "self gratification" behavior decreased to normal background levels.
I hope this helps.
Jerold in Citrus Park, FL
My understanding is that RLS can have a pain-type of component involved, usually, but not always in those of us that have had it for a long time. Movement is not a requirement for an RLS diagnosis, but rather is a response to the restless legs syndrome symptoms. Sometimes I have RLS symptoms but they are not strong enough to elicit movement, other times, they are so strong that I have no choice but to move them because the feeling is so incredibly unpleasant. For example, as I sat down to write this and check the rest of my email, I am having some mild RLS symptoms. I have not needed to shift my position. Other times, I need to move literally every 2-3 seconds because it so so unpleasant.
I am glad to hear this as this is very similar to what i experience.
Thank you everyone for your replys. It's a bit of a relief to find others that understand.
Restless legs pain!!! 
How to distinguish RLS and Periodiic Limb Movements?
Involuntary movements
Is acute pain part of your RLS experience?
