I am a 40 yo male and in the past 4 months I have had, at least once a month, a feeling I cannot shake in my legs and body. Its a dull ache and moves into my chest if I do not violently jerk the offending limb to "stop the feeling" it morphs into a panic attack leaving me some nights in tears that I just have no control or cannot get relief, Walking doesn't help neither do hot baths. HELP! The feeling is difficult to describe since it is much more than a dull ache but it is UNMISTAKEABLE when it onsets! Anyone else have this? How do you cope? I am a medical marijuanna patient, (mainly for poor sleep patterns anyway and always) and it does not touch this! Thanks in advance.
RLS is debilitating: I am a 40 yo male... - Restless Legs Syn...
RLS is debilitating
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ericjameshair
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74 Replies
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I experience something very similar to what you describe - in addition to RLS. It is different from the primary RLS symptoms of a build up of a truly horrible crawly sensation which intensifies to a crescendo when it is impossible not to move the affected limb or the torso or wherever. Importantly, walking does relieve the primary RLS symptoms almost entirely. What you are describing (as I appreciate it) is something different. And just like you say, with me it can be a prequel to a panic attack, starting in the arms and moving in to the chest. I had never experienced anything like it until this year. I attributed it to the effects of withdrawing from oxycontin which I took for a few months for my RLS. I found it very difficult to withdraw from oxycontin and I experienced the feelings you described nightly and very intensely during the withdrawal period. Now I get it more infrequently.
Like you, I haven't found anything that helps AT ALL with this. I end up sitting on the side of the bed with my head in my hands rocking back and forth - not that this particularly helps but it is the best I have come up with. I tried CBD oil - very expensive but absolutely no impact. None of the other various meds I have been on seem to have any beneficial effect. I haven't gone to my GP because although it is VERY unpleasant - and unmistakable and disturbing, it is also nebulous and difficult to convey in words (although your description is very good).
But ... I also use cannabis to help with RLS and in particular with RLS related insomnia. Could the sensation you describe actually be attributable now to the cannabis? Have you tried stopping cannabis for a time? I am wondering if I should try that. My sleep has improved somewhat recently and I might be able to do without it. I must say it would be a blow if it was linked to cannabis consumption as my list of effective drugs is already fairly thin.
Thank you for the response. I also find myself cradling my head in my hands rocking back and forth after moving from the floor to upside down, to feet against the headboard so i can kind of pump my soles against the headboard. I am also going to my Dr Thursday as I think i have finally found the suitable words to explain the experience. I have not tried stopping Cannabis, it would make it worse I am sure since I was on Ambien for a bit (stopped that nonsense quick) but since a baby I have NEVER slept, but this, this is some whole next level shit, I need to find relief for.
I would be most interested to hear how you get on with your doctor. I too have been upside down with it, and have feet against the headboard. It sounds like exactly the same thing. I agree it's on a whole other level from straightforward insomnia (awful though that already is).
I will keep you posted!
• in reply toinvoluntarydancer
When I was a child and suffering from RLS, around the age of 12, I decided that instead of fighting it, that I would find a way of joining it. (And apparently, this concept is not that unusual, as I have read that others in our position have also tried to accomplish this exact same outcome). And it is usually around the same age of 12-14.
I practiced and practiced many, many different types of movements and routines until I finally settled on a somewhat unorthodox form of a rocking structure that allowed me to move in a way that seemed to be able to accompany my kicking legs and I was able to find some relief from the totally frustrating and annoying continual kicking that I was forced to endure that enabled me to combat the hideous symptoms of RLS.
I would lay flat on my bed on my stomach with my head under the pillow with my feet hanging over the end of the bed.
It took ages and ages to find a routine that my body would accept, but I was desperate, and determined to succeed, because, well .... i simply had no other choice.
Finally I won and I was successful, (I know what that sounds like ... a game. Thats what it felt like, me against my legs, every single night), and I'd rock, over and over, back and forth, from my waist down, hence, my legs were always moving.
I'd tuck my arms up beside the upper part of my body and my hands up under my neck and chin. It had to be exactly the same every night so as to form the habit. It took months and months to get it right and to refine to the degree that my body would accept, and surprisingly, (believe it or not) it actually worked and was extremely successful, and I was able to find some relief and I was finally able to find some peace and eventually some much needed sleep.
Ohh ..... but I still had the dreaded chronic insomnia, and it still took ages for me to eventually fall asleep but at least I could finally stop the continual kicking and I was able to find some relief from the RLS and from my suffering and I thanked God because eventually I found sleep.
You are describing a bad RLS attack, ericjameshair.
I have extremely painful primary RLS and used to be on pregabalin and morphine...which I have to say worked like a dream come true. However, the weight gain with Pregabalin was a problem and I didn't want to be on morphine for the rest of my life.
I started researching a drug called Naltrexone because in very low doses this can stop RLS and all sorts of other health problems by causing your your brain to produce 300% more endorphins straight after the drug has finished working (after 4 hours).
These endorphins are your body's own natural pain killers and also healers. It is now 3 months since I started using an ultra low dose (in micrograms) to wean myself off morphine and I'm currently 3 weeks without pregabalin (which is another nasty drug to withdraw from).
Because I'm no longer on opiates I am able to take 4.5mg of low dose naltrexone every day. This drug is almost without side effects , other than vivid dreams, and initially it upset my stomach. Since I've had the sublingual drops I don't have the stomach problems.
I can report that although the RLS is not yet gone completely, it is far better than I could ever imagined! Before, when I thought of the prospect of having to come off the morphine and pregabalin, I would be in total and utter despair, remembering how bleak my life was when my RLS was at it's most painful. Now the only tablets I take for pain are paracetamol and ibuprofen.
Because initially I wasn't able to get LDN from the UK supplier in Glasgow (Dickson's) they wouldn't supply it because I was on morphine. I watched a video on Youtube where the late Dr.Bahari talks about how LDN came about. On the bottom of that screen was a website that sold Naltrexone that you could then dissolve with medical distilled water and take in very very small amounts to help you wean off opiates....there is even an absolutely brilliant Facebook group called NOPE which have a mountain of information on how to titrate these doses and all sort of other useful information, which, their help and support and of course ULDN, I am where I am today....and full of hope for the future.
LDN can help all sorts of diseases and RLS it seems is one of them. I'm not completely out of the woods yet, but from where I was five years ago (desperate and suicidal) I'm in a totally different place today.
PLEASE look at these videos and start doing your research. You too can get relief from this terrible blight on your life like I did!
I inherited RLS from my father. He died just last month but right up 'till the end, his legs were hurting and he would rub them like I used to do...I wish he could have know the help this drug could have given him.
ldnresearchtrust.org/ldn_fa...
I wish you well.
Imogen
WOW, Thank you that is a ton of research! THANK YOU! Whats odd for me is that opiates or any other type of pain medication does NOTHING its like its a different type of pain, more psychological.
• in reply toericjameshair
So you are saying that Cannibas helps you sleep. Is your lack of sleep contributed to the more serious form of no sleep ... eg: as in Insomnia?
• in reply toinvoluntarydancer
I have recently been in contact with CBD Brothers have as yet nothing has eventuated, altho I have advised them of the samples that they requested I supply. You say that they are expensive .... I wasn't aware of this.
I am also interested in trying to give cannabis a trial but unfortunately have absolutely no idea how to access it.
Probably not a concern for the younger generation but at the age of 64 ..... not so easy. Any suggestions?
Can you think of a connection with what has happened 4months ago that might have given rise to this new development. New medication or some food trigger.? Or change in some aspect.
A diary can be a powerful tool in pinpointing coincidences and as an aid for medical diagnosis.
Good luck to both of you.
Only thing I can think of is that I stopped all alcohol consumption. Used to have a few after work everyday and it got old so i took a break and liked how i felt, until this nonsense LOL but I HIGHLY doubt going back to drinking will help or end my issue lol! Imagine?!
Thanks Madlegs! You prompted me to think and I am 99% sure it was the med change! Good Luck and Best!
What was the med change? See the list on the foundation web site of Drugs to Avoid. Either the UK Foundation or the US foundation, they both have the list, and we have discussed meds to avoid all over this forum,
Effexor!! Weaning off that as of yesterday
I can only say that using marijuana for withdrawal from RLS drugs worked brilliantly for a week for me and I then developed severe panic attacks. The feeling was awful- exactly like the crescendo involuntarydancer describes and I would have to run out into the open and thrash my arms around ( but it didn't stop the feeling). They stopped as soon as I stopped the cannabis. I had the same experience on oxycontin which stopped when I took diazepam. I now take pregabalin ( Lyrica) which has the same effect as the diazepam at stopping that panic attack/crescendo but also acts as a sedative.
As madlegs suggests, maybe stop the cannabis for a while OR take diazepam when the feeling occurs. If the diazepam stops the sensation - result! As it only happens to you once a month, using diazepam once a month is unlikely to cause any problems.
Hope you get it sorted.
Thank you for the info! I have been using Cannabis for around 20 years and never have any issues, I grow my own strains. In fact it helps settle me down but I have never experienced a "panic attack" or that sensation until this and when it happens its much more physical. I too run around flailing for no relief lol! I may try the Diazepam if Dr prescribes.. How do they test for this anyway?
Test for RLS or panic attacks? RLS is diagnosed by taking verbal history from the patient. Also panic attacks. PLMD is diagnosed during a sleep study where they put sensors/electrodes on you.
My doctor just gave me diazepam when I told her I was experiencing panic attacks and asked for a few days of diazepam to stop them. They worked and as I only took them for such a short time, I didn't become dependent/addicted. It's worth trying to see if it works.
How brilliant that you can grow and use cannabis without being arrested. I wish the UK would legalise cannabis so all the horrible Skunk strains would disappear and people could grow their own organic cannabis for medicinal purposes.
Yes Joolsg ! Super Fortunate! I raise Jack Herer for a sativa and a few indicas with the exact phenotypes that help me. Hopefully that nonsense law gets reversed over there too! Hey guys here is a bunch of prescription chemicals...but you smoke cannabis?! (makes note in pad) your a druggie lol! Makes no sense but it makes the right people dollars!
On the other side I feel I have accurate verbiage now to share an oral history with my primary. Im pumped I found this site! I just finally slept, I found this site on the train home from SOHO NYC for work which I had to leave early because of the previous nights attack! Def going to try Diazapam but I have heard varying things on Lyrica which makes me nervous
If the diazepam works for those few times a month when you get the attacks then that would be brilliant.
I wouldn't take anything else if you don't need it. I only take Lyrica because it sedates me and helps the nightly RLS together with the OxyContin. Lord I'm a serious drug user- I'd only need cannabis if I could grow my own strains like you.
We all know that the only winners in criminalising cannabis are the big drug companies.
Raffs has plenty to say on that subject as well !
SUCH BS, Fuck big Pharma! I am in Mass and it was recently made legal recreational and medicinal. I have been growing since medicinal began. I only use Cannabis and Kratom. I also take venlafaxine HCL ER whatever the hell that is. I take it because without it I wake up with a crushing nervous feeling in my solar plexus and this takes that away. Id like to be off everything, except what I grow, but I HAVE to figure this out. Also, how is RLS viewed? I.E 90% of people I have encountered with "Fibromyalgia" are simply lazy, attention seeking, scrubs looking to not work but get paid and have lifetime scripts to god knows what!! NOW I also know people in the small % that actually have it and GOD is it TERRIBLE. I guess I am just wondering how RLS sufferers are viewed since it is kind of self diagnosed and then verbally shared for the diagnosis. I know its a stupid question but I don't think people who have ever had this even slightly realize how close to hell it is!
Venlafaxineis a known culprit in CAUSING RLS so you should consider safer alternatives. It's an anti depressant and RLS is noted as one of its side effects.
If you need an anti depressant for off label use ( controlling those sensations in your solar plexus) look up one that is safe. Have a look on rlshelp.org for alternativesand avoid SSSRI anti depressants. Did you start venlafaxine before or after your RLS started?
Holy shit! Well thats getting axed today! I cannot remember if I was on this when it first began. it was right around that time. I went from paxil to wellbutrin to this..
Wellbutrin is one of the safe anti depressants- it doesn't trigger RLS. If you were ok on that, try it again but, yes, get off the Venlafaxine ( but tell your doctor as stopping any med cold turkey is not usually advised.
Let's keep our fingers crossed that getting off Venlafaxine sorts out the horrible sensations.
Good luck & let us know what happens
It was odd the Wellbutrin made me super aggressive and angry so I stopped that one fast! Im hoping this is the trigger but even if it is and I fix this issue it has shown me what a horrible thing this actually is and do more to help research and coping methods. Wouldn't wish this on anyone.
I know, it is absolutely horrible. I have Multiple sclerosis as well and that is taken really seriously but I can honestly say it is a walk in the park compared to RLS. I really believe it should be taken more seriously than MS as it has a much more serious affect on your physical and mental health.
Maybe try Trazodone instead or see if you can manage on just the cannabis...
• in reply toericjameshair
Welcome (or, I should say, regrettable welcome) to the 40-and-under club for those with RLS! I'm 36, was diagnosed with RLS at 34, am reading all these posts from those at least a decade (or more) older than me, and am thinking "holy shit, is this what I have to look forward to?!! Getting worse?!!"
Disclaimer: no disrespect meant to ANYBODY on here.
What dose of Wellbutrin were you on? I take 150mg ever night. Maybe you were on too high of a dose and that's what caused the aggression? Joolsg is right; it is a safe antidepressant for RLS (probably the safest).
ericjameshair• in reply to
Of course it is LOL and I can't use it! I was on 100MG I believe . It was like what people describe as roid rage LOL
• in reply toericjameshair
Ok. Then see my response to Joolsg re trazodone.
Jools, random question...if the venlafaxineis brought this on do you think discontinuing the medication will eliminate the issue. Or once it has been triggered then the party over, RLS life sentence?
No I really don't think so. If the drug caused the RLS I strongly believe it will stop once you get off it. It seems very strange that you suddenlydeveloped these weird RLS sensations only 4 months ago. As Madlegs says, you need to look at what happened or changed 4 months ago and it would seem to be the venaflaxine. Google it and you'll see that when it has caused RLS, stoppingthe drug solves the problem.It takes 2 weeks after stoppingfor symptoms to completely disappear.
Jools thank you so much. Its funny 24 hours ago I thought I was nuts! That no one would believe what i was saying if i could even explain it. and now I feel much better, much better! I will keep up with updates as long as you guys are interested. Thanks again!
We're always interested in hearing from fellow RLS sufferersas we know what RLS is like. Shared info on here is reallly helpful as we all learn something new about the condition, what causes it, and what might help stop the sensations. Definitely let us know how you get on.
Right around the same time, I also stopped any and all alcohol consumption.
RLS is treated with bewilderment here as well. No one has heard of it and no one takes it seriously. Hopefully that will start to change as we become more vocal and more political.
If they only knew..........when and if it hits them they won't be laughing anymore
• in reply toericjameshair
God, you are SOOOOO right!!!!!!
If you need a safe anti depressant try Trazodone. It doesn't affect RLS and may improve sleep.
• in reply toJoolsg
Oh, ok. I didn't know that either.
Ericjameshair: Wellbutrin can cause sleep issues, so this sounds like a great alternative!
Joolsg: is Trazodone known by any other name?
Its funny that 90% of people with their medical problems are lazy do-nothings escaping work (and pay and life).
We with out RLS are the only true sufferers in this world.
As a fibro sufferer, I don't think your characterization is fair. People with this disorder suffer greatly. You don't know unless you have it and I hope you never have to find out. When fibro took over my life, I was working full time on my feet in a factory. I did not want to quit. One of the most crippling symptoms is lack of energy. When the little bit of energy is used up, that's it. You're done.
If someone doubted the symptoms you're having right now, how would that make you feel?
Im sorry if you took my comment incorrectly, I have copy and pasted it for possibly a review of what I actually said....."90% of people I have encountered with "Fibromyalgia" are simply lazy, attention seeking, scrubs looking to not work but get paid and have lifetime scripts to god knows what!! NOW I also know people in the small % that actually have it and GOD is it TERRIBLE"
I believe showed compassion for TRUE sufferers however being unable to test for it I also know numerous people that state they have it to mooch the system knowing it cannot be disproven. That is a FACT, so I apologize if you don't like my comment but thats life. ALSO, to add the reason this was brought up was because I wanted to know what the overall perception was, because I myself
"If someone doubted the symptoms you're having right now, how would that make you feel?
am in that situation.
Have a good day
Agree 100%. Much of what passes for RLS here is simply not. More likely Neurological / neuropathic / fibro or MS and any of a range of horrible debilitating maladies.
• in reply toMadlegs1
True Madlegs, there are conditions that mimic RLS symptoms and are not RLS.
Madlegs1• in reply to
My own simple test is whether Paracetamol or an NSAID relieves the symptoms. If it does - it's not RLS.
Madlegs I think I am reading this right but if I am I agree. NO OPIATE or any narcotic pain killer is going to even TOUCH this, its just not that type of pain, more along the lines of torture!
Then what you have is not RLS.
Opiates will absolutely relieve rls in almost every case- and has been successfully used so for 300 years.
• in reply toMadlegs1
Well, there's a bold statement if I ever did see one!
Again, I get schooled LOL! To be Honest, I have never tried, but my "assumption" (my first mistake) would be that no painkiller could touch this..its just a different pain than say when i smash my fist or get a cut.
• in reply toericjameshair
Strong pain meds as in opiates will work for RLS. You dont have to have pain. I did mention this to you somewhere on this thread. And they can be taken as needed. Lots on this forum and other groups i belong to use pain med rather than the dopamine meds, or changed to pain meds when they augmented on the DA's. And the RLS experts now prefer to use pain meds. OF course there are some who cant take them for various reasons.
Also what is PLMD
PLMD is periodic leg movement during sleep. It's where you thrash about in your sleep but it usually doesn't wake you up. A lot of people with RLS also have PLMD.
• in reply toericjameshair
As Joolsg says. Known as PLMS in Europe and PLMD in the USA ("during sleep" and "disorder" respectively). But let me add that, because it happens unbeknownst to the person, it can only be diagnosed through a sleep study. I have PLMD. Was diagnosed with it after my polysomnograph (in-lab sleep study) diagnosed sleep apnea in 2011. I wasn't at all surprised by the apnea diagnosis, BUT I was when the diagnosis of PLMD came along with it. The only hint one has in knowing they have PLMD is waking up extremely tired and having EDS (excessive daytime sleepiness).
If you want more info. on PLMD I'd be happy to share.
• in reply to
And of course if you have a partner they will tell you, you have been kicking them in the night while you were fast asleep.! 
• in reply to
Yes, you would think so. But, no, my hubby didn't warn me.
When I have the RLS in my back/chest/arms I too jerk violently starting with dull ache that seems to slowly increase in severity until I snap out the limb and discharge the energy only for the rise to immediately begin again.
I have never tried to stop it because of how bad it feels when not flailing around like a mad man slapping at ghosts. The 'sensations' are intense and it tends for some reason to occur in the middle of the night and/or middle of day. At night I normally take 100mg of Tramadol it and if I have it cannabis although both drugs barely touch it and it normally isn't until after my 6am Targinact kicks in that things start to settle down, (I have Kratom to take but cannot stomach it in the middle of the night). During the day I take cannabis if possible sometimes Kratom but mostly drum. Between the concentration and the constant moving of both arms it keeps the worst of things at bay.
I remember when I had RLS in just my legs and how I though things were bad and couldn't get worse...man I was wrong.
What's the cannabis for? How long have you been taking it?And do you take any other drugs? Madlegs1 makes a very valuable point about keeping a diary, you may be able to pin point and wipe this out in less than a month if it is related to some food you eat. Joolsg brings up the point of cannabis causing panic and it might well be worth trying a period without if you can to see if the episodes occur or not.
I too would be interested to hear what your Dr says, keep us informed if you can please.
Take care.
ericjameshair• in reply to
Hey Raffs, I am an insomniac from the womb LOL! Dr had me on an Ambient run but I was all set, shit jacked me up too much. So I went back to good Ol MJ ( I never stopped) but now it is legal in Mass so I am on the books. The Cannabis has been the only ol faithful in most cases but when these attacks happen nothing short of the grace of god can help!
• in reply toericjameshair
I can't wait til the fools here realise about cannabis and catch up with you guys.
I have had RLS for years and so far the only thing that really helps is menthol gel that you rub on your legs. Occasionally I have to reapply once or twice but it usually stops the RLS after one application. Hope this helps.
Thanks Steph! I have tried that once and it somehow agitated it more and forced it even deeper into my chest! Great idea Im just a mess LOL! Thank you and best of luck
Welcome ericjameshair, Lucky you being able to grow cannabis in your back yard. Unlucky you for needing to grow it. I see you are in the same profession as me. Spend your days standing on your feet and when you get the chance to sit down you can't because of your RLS. Sods Law. Don't write off Lyrica though. It has been a game changer for me . Long may it last. So glad you found others on here who recognised your symptoms and were able to offer help. I hope you can stop your RLS by changing your antidepressant meds. Fingers crossed. Good Luck.
Okay so my update is as follows: Effexor has been stopped, on the lowest dose so in order to wean off I am taking now every other day week 1 then stop. I have Xanax for the rough spots. My Dr. also wanted to check a bunch of thyroid stuff as well. Waiting on blood results to see if its anything else. Night 1 and no attack.
• in reply toericjameshair
Congrats!!!!!
Just one more piece of advice:
have you tried support stockings? I have knee-highs and they help calm my movements (sometimes)
Some good news. !! Once we get to delve a bit further into members meds, sometimes we find they are taking one of the meds that are usually a no no for RLSers. 
ericjameshair• in reply to
Elisse, Honestly You guys made a major impact on me here. The support is Amazing and I cannot Thank everyone that commented (with useful info lol) enough! Such an impact I plan on doing what I can to help others like you guys did me! Solid group
We call it paying it forward. Passing on experience and knowledge to others.
ericjameshair• in reply to
Ok so I am not sure of this is helpful but a friend of mine suggested ketamine. Anyone else heard of this? They are using it currently I believe for depression and a few other things
ketamine infusion treatment ketaminetherapy.com
Yes I believe that you may indeed have RLS. Have you been to a specialist to get some expert advice?
I feel that I am somewhat of an expert on RLS as I have been suffering from it since childhood and I am now 64.
Please, please go to a specialist and receive the qualified advice that you require.
Good luck x
Hi, l have been reading your posts and they make quite horrific reading. I am so sorry for you all as you as you are having such a horrible time with RLS and everything else. I have RLS but not nearly as bad as all you ones are suffering with and l used to think mine was the really bad.
I posted earlier on about drinking water for my kidney disease, and finding my legs seemed to have settled after a month or so. I get the occasional night or two when they start again but l have noticed it is when l had lapsed in my amount of water intake.
I am not saying water will help everyone as we are all different. I just wish it did as you are all suffering so much. It is so good to see all of you helping each other. I was so glad when l found you on this site for the advice and help l received from you all when l needed it .
Just an update. I wanted to take a few off and see what happened. My last move was to stop effexor in hopes that it would also end the attacks. As of last night I am on my 4th attack in as many weeks and they have increased in severity. Dr. gave me xanax, does not do it! So now Im left to my next step, whatever that is. The main difference between now and before is now I feel like I have less control. Sucks
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