I’m intending to write about some of the psycho- social and other factors affecting RLS. The intention of this is to offer further help to RLS sufferers mainly, on how to “manage” or “cope” with their RLS.
It seems that psycho- social factors particularly, are largely unexplored and ignored for RLS in comparison to other chronic serious conditions where they are commonly accepted as being helpful.
It seems as if there are three aspects to RLS
1) The causes of RLS and its symptoms
2) Treatments and remedies
3) “Coping with” or “Managing” RLS.
There is apparently very little specific literature in respect of the third aspect of RLS. There also appears to be very little reference to literature on this aspect in general, i.e. as applied to other serious chronic health conditions.
Briefly about the first two.
Nobody (I hope) would dispute that RLS is a physical condition due to differences in the nervous system. Whatever brings these about. Neither then would anybody disagree that the causes of RLS are also physical.
However, in some respects, it does not appear to be absolutely true that there are no psychological factors contributing to RLS.
One factor is anxiety. Anxiety is a psychological response and may have psychological causes. In addition, anxiety is a part of the “stress” response, a physiological response.
I believe that it is fairly well accepted that the stress response as part of anxiety can trigger or exacerbate RLS symptoms. In support of this, the link below is not to a particularly credible source of information but does at least suggest that this is not solely my opinion.
If this is accepted then logically it appears that if anxiety exacerbates RLS symptoms then anxiety management can help remedy RLS symptoms. This is NOT a “cure”, nor does it mean total elimination of all symptoms, but can help.
Another possible psychological factor in RLS is sleep/insomnia.
I can’t imagine that anybody would dispute that RLS causes insomnia. What might be less acceptable to some is that insomnia can exacerbate (if not causes ) RLS. When this is the case it’s easy to assume that the insomnia is totally due to RLS. However, the insomnia may be partly due to psychological factors. In which case, psychological remedies for insomnia may be of help.
Having looked into this a, little, it does appear that the relationship between sleep is more complicated than is at first apparent.
Considering the relationship between anxiety, insomnia and RLS and to say that absolutely NO psychological intervention can help treat RLS does not appear to be entirely true.
Following only a little reading it does appear that there are some very significant psychological and other non-physical factors affecting people suffering RLS and that also similarly to other serious chronic health conditions, coping with RLS requires a holistic approach.
In this sense a holistic approach means looking at the person as a whole, not just their condition and it’s symptoms but at the person’s mental, emotional, social and spiritual needs.
This is in sharp contrast to the “medical model” applied to RLS which focusses solely on symptoms and treatments.
It also needs to distinguished from some alternative, complementary or herbal remedies that may be called “holistic” but in fact are not.
One key concept found in health psychology theory which can be applied to how people cope with any physical condition is known as “locus of control”. Another concept is that of “coping styles”.
I intend to submit further posts on these topics, explain them in simple terms if I can and hopefully will be able to suggest how they can be applied to coping with RLS.
I think it's important for me personally to come to terms with the fact that this is a lifelong condition. It's a case of learning to live with it. I have given up looking for some medication to take this affliction away.
I think too there is a lot of anxiety because so few people get taken seriously by most doctors. One has to do a massive search and be an advocate for one’s own health to a large degree to get anyone to even LISTEN. Further, the only test is to give anecdotal evidence, which often gets us thrown into the category of “drug seekers.”
I also have such dread knowing that if my symptoms are this severe at my relatively young age, how much worse will they be in a few decades? (God willing that I live that long.) and what will my quality of life be like then when my lifetime is already consumed with RLS now? Did I pass it on to my child?
There is a lot to unpack. I’ll be interested to see what you post.
I feel exactly the same. I’m only 45 and have been suffering with RLS my entire life but it only became a real issue when I feel pregnant with my first child 10 years ago. It’s been a constant battle ever since then. Judge by your user name, I’m guessing you’ve recently had your first child? Congratulations! Did you have RLS before this?
It worries me how much my RLS have worsened over the past 10 years. I dread to think how I’ll cope if it continues to worsen at this rate.
My younger daughter (whose 8 now) is showing possible symptoms but I’m hoping it’s just frowning pains…only time will tell.
I sympathize with you. My only advise is to read as much information as you can and be open to try anything which is suggested on this site as the people here are far more informed than most doctors. If you haven’t got a neurologist yet, I would suggest you find one. I see mine every 6 months (before Covid), and although she hasn’t provided a magical cure, she is at least willing to try!
I gratefully found this forum right after my first son was born almost a year ago, and my symptoms were so severe that I couldn’t even sit to breastfeed my son for longer than thirty seconds at a time without moving or having involuntary jerks. I was told that ropinerole was suppressing my lactation, and, as we were still living in the midst of COVID uncertainty, I wanted to give my baby every possible immunity I could. I stopped 2mg nightly cold turkey, having absolutely NO idea that I had to wean down. It has been a horrific nightmare ever since. (I’ve had RLS as long as I can remember, but it didn’t realize I could be medicated for it until about ten years ago, and I was promptly out on 1mg of ropinerole. I’ve been increasing in dosage for about a year to 2mg, and then found it wasn’t covering my symptoms. Had no idea augmentation was a “thing.”)
Found a neurologist. Neurologist told me “breastfeeding is stupid” and wanted to increase my ropinerol even more. Told me “no one in my practice gets opiates.” Left her office crying more than once because I was so desperate.
Got a new neurologist. She finally agreed to put me on opiates after I exhausted everything else under the sun, including gabapentin, Horizant, magnesium, oral iron, 5 IV iron infusions. (Turns out my ferritin was 7), clonazapam, and ambien. FINALLY titrated off the rest of the ropinerole about a month ago, and am finding a bit of relief with hydrocodone, though my doc does nothing want that to be my longer solution because “I am too young.” I have countered with every peer-reviewed article I can, and have expressed my fear at the cardiac damage I am doing to myself from such extreme sleep deprivation.
It’s been absolute hell. I cannot emphasize that enough. I have seen the articles that demonstrate a correlation between RLS and significantly increased rates of suicide, and even though I am only 38, I totally understand why. If I get cut off from opiates, I don’t know what I would do. Just thinking about it puts me into cold sweats.
If they told me that smearing peanut butter on my eyebrows and standing on my head would work, I would do it. I don’t care. I’m open to whatever WORKS.
Thanks . I’m already doing it with vitamin c before bed and have for the better part of a year since I discovered it could help my symptoms. I just can’t seem to keep my levels very high, though. Currently working on this with my neurologist.
What form of iron are you taking if I might ask? Do you feel like you get any benefit from that nightly iron? The other issue to be mindful of is to avoid things like melatonin, anti-depressants, certain antihistamine and certain antacids like Tagamet.
I should mention that ferrous sulfate is difficult to absorb and unlike the ferrous bisglycinate that I take, it does not provide the nightly relief from RLS.
I haven’t noticed any difference whatsoever from taking the iron. It’s slow iron, I don’t remember the brand name at the moment. I’ve also had 5 IV infusions, and, while it cured my severe anemia, did nothing for my RLS symptoms, alas.
Thanks Manerva, I appreciate you taking the time to share your research, knowledge and thoughts on these matters and I look forward to following your next postings. Kind regards Julie McGowan from Western Australia.
Thanks Manerva, I'd certainly be interested in hearing more about health psychology approaches to managing chronic conditions.
Interesting. I certainly know that anxiety and stress has always been part of my life. Also I remember as a child needing the backs of my legs rubbed on a regular basis to allow me to get to sleep as I would wake shortly after I’d been put to bed. I have recently been diagnosed with a rare blood cancer (MPN) and we know that cancer may be linked to anxiety and stress. I do know that I don’t know how life would feel without anxiety and whilst I can cover anxiety expertly much of the time (I have had years of practice), when tired it becomes more apparent as I tend towards stress reactions. So it wouldn’t surprise me at all that this is linked. I know that I was an anxious child as well.
Coping with a horrible condition like RLS causes psychological distress. Lack of sleep causes natural anxiety and a stress response. Psychological distress results in a vicious circle & some people benefit from help in managing this but I firmly believe that RLS is a physical condition which requires ongoing research to solve.For a long time stress was said to be the cause of stomach ulcers, then the bacteria helicobacter pylori was discovered & the stress story disappeared.
Please may the physical causes of RLS be researched till they are found & treated.
In the meantime in the same way as ulcer sufferers had to find their coping mechanism for years we do too for RLS but cause & effect are a different matter.
Hi Manerva. It’s been a while. Maybe I’ll post an update. That aside - a few days ago, I listened to the most recent RLS Foundation webinar re RLS in Older Adults. She covered quite a bit, but what struck me was when she went through all the meds, etc., that are commonly taken for depression, anxiety, sleep are definite “NOs” for RLS. I believe there was only ONE antidepressant that people with RLS can take. Benadryl, melatonin, definitely NO. There were more, but I’ll have to re-listen to the webinar because I didn’t catch all of them. Just an aside: I had to have two steriod injections in my spine. As a result, my back and SI are great but for THREE nights I was up ALL night with horrible RLS. It never quit. I was desperate. Four days later, the agony subsided. We really are in a bind, you know????
"If this is accepted then logically it appears that if anxiety exacerbates RLS symptoms then anxiety management can help remedy RLS symptoms. This is NOT a “cure”, nor does it mean total elimination of all symptoms, but can help. "
The management part needs to be taken seriously. Prescriptions may actually cause acceleration and worsening of RLS. For me it started with minor RLS symptoms, which eventually lead to anxiety. Started with pramipexole and then was prescribed escitalopram for my anxiety. If you read the side effects fine print and you are aware of augmentation I was basically throwing gas into the fire. While escitalopram takes care of the anxiety, it amplifies RLS.
I would recommend no-prescription anxiety treatments first.
Just saw your post Bks429 and I would not be surprised if escitalopram is on the list.
I think there's a lot to be said for the management approach and learning to live with RLS. I also have tinnitus and the tinnitus help site basically says just that - there are almost no cures and a lot of people learn to live with it. Before I go on I know there are many, many people who have very serious symptoms where the idea of "living with it" is probably impossible and those people will need to rely on the standard pharmaceutical products or maybe alternatives such as Kratom, CBD etc as well as trying to work out whether they have triggers in foods, medications, or activities And even then the symptoms may be very difficult to live with. However there will also be a group where there are ways to manage the impacts to a degree and I believe here that your attitude to the disease can make a big difference to how much it impacts your life. There is a saying "what you resist, persists" and I have found that to be true for RLS as well as several other conditions such as the tinnitus, neuropathic pain etc. I do think there is a lot of value in a sympathetic and accepting approach to living with RLS alongside anything else you can do to help relieve the effects.
Call me crazy , but...many , many years ago I became anemic and eventually developed RLS. One of the symptoms of the anemia was tinnitus. I noticed you suffer from tinnitus . Is it connected to your RLS ? Maybe Fred's boat goes through the ear canal . I am serious.
I think there might be two things going on. There’s a normal tendency as we age to lose higher frequency hearing and the medical establishment believe that tinnitus may be the brain compensating for the lost high frequency signals. However when I had nerve issues due to a spinal problem both the tinnitus and RLS became a problem about the same time so I believe the state of your nerves and how aggravated they are, is a factor. However having done a load of round reading on both tinnitus and nerve and back issues, tinnitus also seems to figure reasonably highly with people who have suffered some sort of other trauma or anxiety. One possibility is that when the person is in a very high state of anxiety they become much more aware of things they had previously been living with or not noticed. I had a very demanding job before my back issues and I wouldn’t be surprised is there had been some tinnitus present that I just didn’t notice. Even now I don’t notice it for most of the day if I’m busy or there are other distractions.
Thanks Manerva, really appreciate your posts and looking forward to your suggestions. My daughter is recovering from long covid and is using a course similar to cognitive behavioural therapy which she is finding really useful. She did suggest that it would be useful for me with RLS but my first reaction was negative. However there have been posts here suggesting that others have found it useful. I'm reserving judgement!
I believe stress exacerbates RLS.I am going through severe augmentation and withdrawal from ropinirole.
I last lowered my dose of ropinirole 11 days ago and felt I was coping quite well with that reduction (I have oxycodone to help) but earlier this week which was day 7 since I had reduced I had a very stressful encounter with an ignorant GP which ended up in quite a showdown a couple of days later! Ultimately I got a good result...
But the point is since then my symptoms have become much worse! I put that down in part to the stress 😭
Thanks Manerva I look forward to your subsequent posts. For me one of the keys to living with RLS is finding some way of dealing with the anxiety/stress/depression linked to the fear of a worsening of symptoms and not being able to find a treatment you can live with
Thanks for sharing these helpful ideas. I have long wondered whether my own RLS is a result of, or at least exacerbated by, a lifetime of hypervigilance that started in childhood. There is so much still to be learned about the mind-body connection, and I appreciate your exploration into the psycho-social factors at play here.
In addition to RLS, I have a condition called Essential Tremor (thankfully, not Parkinson’s), and I can absolutely attest to the exacerbating impact of anxiety on that condition. When I’m anxious, my hands shake much more. It seems very reasonable to consider that anxiety would have a similar impact on my RLS, although it’s harder for me to observe this directly because I keep my RLS symptoms mostly at bay with medication. Regardless, my body definitely functions better overall when I can maintain a non-anxious state.
Thanks again. I look forward to your further posts.
Note: the below post is more if an aside from RLS and more my opinion of psychotherapy. It's just where my thoughts went.
CBT (Cognitive Behavioral Therapy) and DBT(Dialectical Behavioral Therapy) are the two most widely used forms of non pharmacological treatments of mental health issues and more recently pain management among other things. These treatments have been pushed hard as the holy grail for so many ailments. One of the main pushers of these treatments is the insurance industry. Sending a patient to a 5 to 20 week course of weekly sessions is very inexpensive for them.
The implementation of these types of psychotherapy is very delicate and can be very damaging if not done correctly or pushed due to time constraints. Alot of people are limited by insurance in who they can see. Being comfortable with ones therapist is paramount to any success and finding the right fit can take numerous attempts and take years. Even with a skilled therapist the success rate is not much different than medicine.
What some also fail to think about is that psycotherapy can have side effects just like medicine. And like medicine they can be severe and life threatening.
Pop culture articles, books and self help tips lead people to believe that if you try CBT or DBT and it doesn't work for you, then it's somehow you're fault. You didn't try hard enough or didn't apply yourself. The finger is rarely pointed at the provider of the therapy or the therapy material itself.
One bad experience of this can have severe consequences to a patients long term mental health. Increased shame, anxiety, depression and suicidal thoughts.
I'm not against these treatments but now take them with a grain of salt after having been in an intensive 10 week all day inpatient DBT course. At the end of the 10 weeks myself and other patients discussed the shame we felt from still suffering and not feeling much better. Some of us were directly told that we weren't trying our best. Really?
From supposed "author figures" this has had long term detrimental consequences.
I still do weekly sessions, but my therapist and I have modified treatment so it is not result based. Not all therapists are comfortable with this and not all insurance companies either.
Thanks very much ziggypiggy. I'm not generally responding to people s individual comments, as it may take too much time.
I am taking note of what people write however, expecially if I might mention the same myself later.
I'll also respond to clarify any apparent misunderstandings.
You give a good critique of CBT, DBT, but I have to point out I am not writing about CBT, although I might mention it as one of many things in which case I'll bear in mind what you've written.
I've no experience of CBT myself, only mindfulness CBT which appears to be the exact opposite of what you write.
Thanks for the reply. Mindfulness is part of DBT therapy. But mindfulness means different things to different people. It's quite the buzz word in pop psychology these days. My first exposure to mindfulness years ago did not go well. The teachers method was similar to Buddhist meditation where you sit still for a period of time.... My RLS did not like that. The word gives me heebie jeebies ever since. I've now learned that mindfulness can be different for each individual. Walking and listening to music is my current form of practice. It's certainly helpful for alot of people. I keep trying to practice as "best" I can.
Thanks for continuing to churn the cogs of our collective brains. We're all better for it.
I would just hate see RLS sufferers go down the road pain sufferers have gone recently. This article sums up my thoughts well. It's not specific to RLS but can be easily applied. A quick read.
Thanks Manerva. My only comment is that for severe RLS sufferers, who experience RLS every single day and night, mindfulness may help them accept that they have a lifelong, incurable condition, but It's not really going to stop their constant RLS. I will continue to push for research, access to the best drugs ( knowing that everyone reacts to them differently) and education of Doctors. Mindfulness is very difficult when you're trying to lie still and follow the instructions and your legs are jerking and you HAVE to move.Doctors definitely need to be taught that most anti depressants cause/trigger/worsen RLS so anyone being treated for anxiety/depression is at risk of RLS.
Hi Jools I quite agree with you about mindfulness and RLS symptoms.
I don't think that I have mentioned any specific psychological therapy in this thread.
I have never claimed that a psycho-social approach to RLS can treat symptoms.
I thought I'd made that clear.
From my experience of holistic care in relation to my other MAJOR physical problems I believe that a holistic approach to RLS will be helpful.
As you must realise I always try to support you in your push for research, access to the best drugs and education of Doctors.
I'd appreciate it then, even if you offer me no support in what I'm trying to achieve then you at least would decline from apparently trying to discourage people.
I haven't Manerva. I've simply pointed out that therapy/holistic/mindfulness/CBT won't help whilst you're suffering severe, constant RLS.I think you've read something into my reply that wasn't there.
And I am in no way discouraging anyone from considering or trying it.
If someone finds it works for them that is brilliant. In the same way that diet and supplements work for some but not others.
Mindfulness didn't help me because I was unable to keep still enough to benefit from it. Magnesium doesn't help me but I still suggest others try it.
Gabapentin and pregabalin did nothing for my RLS but I still suggest them to others.
Hi,Thankyou for all the information + help you post on here.
Can I just be different and say that stress and anxiety Doesn't make any difference to my rls. Although I fully understand the part they play in exacerbating health conditions.
I've gone through horrible periods of time with bereavement, working frontline through covid19, times of sustained + relentless high stress, yet my rls has remained stable and other times when I've been on holiday or feeling relaxed/happy/calm when rls has gone through the roof.
For me at least unfortunately its not a factor. Personally I seem to go through bad phases and not so bad patches, with no rhyme or reason.
Hi Annty, not everybody's experience is the same and it's hard to predict whether any particular factor is going to affect a specific indidividual.
I'm glad that your RLS symptoms are not affected by stress and, excuse the pun, that's one less thing to worry about! No irony intended.
Does this also mean that your RLS causes you no anxiety?
I honestly don't know the statistics on anxiety as a factor in RLS, but if anxiety is only a factor for a small number of people, this doesn't mean it should be dismissed. It only means anxiety doesn't have to be addressed for those for which it isn't a factor.
You only need to help those who need help.
The management of RLS, I'm trying to propose, requires a thorough personalised assessment of all a person's needs in relation to the conditiion. This is called a holistic approach.
Not all a person's needs can be catered for in the medical model approach that seems to dominate this forum.
I don't intend to criticise you, your response has just given me the opportunity to express my view to other members who may be reading this.
Hi Minera,Understand where you're coming from, just wanted to say, like everything else with this awfull disease, we're all different, despite suffering the same. I truly wish that reducing anxiety or stress would make a difference for me, but it just doesn't. That is not to say that I don't get terribly stressed during the night with what I call, excuse the swearing, but... bastard legs...!!
I really hope it does work for some and think your research very worthwhile.
Since I received my hearing aids I don't notice it until I remove them . So no cure, but much relief. Your response certainly applies. I am old and anxious.
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. I’m already doing it with vitamin c before bed and have for the better part of a year since I discovered it could help my symptoms. I just can’t seem to keep my levels very high, though. Currently working on this with my neurologist. 
RLS and psychological distress : bad news?
Mind Body Prescription
