Serious case of PLMD: Hi everyone... - Restless Legs Syn...

Restless Legs Syndrome
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Serious case of PLMD

northof50
northof50

Hi everyone! First off, I dont really have restless legs syndrome, but I have something very similar called Periodic Limb Movement Disorder, which causes severe jerking of the legs as soon as I lay down to fall asleep! It is terribly disabling. Clonazepam is the drug of choice for this disorder, but unfortunately my stubborn Dr. will not prescribe it for me.

46 Replies
oldestnewest

Snap I’m north of 50 🙂

If you are in the USA , Japan or Australia you could try buprenorphine it works perfectly for RLS If you look at my posts I have detailed info on buprenorphine.

Where are u located ?

northof50
northof50
in reply to Shumbah

Hi, thanks for the reply, I am in Canada. I could try asking my dr., but think its a waste of time as she is totally against opiods, I may think about going to a methadone clinic, but it would be a last resort.

PLMD occurs when you are asleep. RLS occurs just when you are TRYING to fall asleep. I think you therefore have straightforward RLS and the treatment for this is one of the 4 types of drugs mentioned on this website.

How long have you had it and who diagnosed you with PLMD?

mayoclinic.org/diseases-con...

As you can see from the link RLS happens when you are lying down , ready to sleep.

I get both the horrible creepy crawly feeling and leg jerks if I am trying to be still ( when I'm trying to sleep).

You should change GP as it is barbaric to refuse to treat a disabling disease like RLS ( and PLMD). Where are you ?

nhs.uk/conditions/restless-...

You should also demand a referral to a neurologist or a sleep clinic. At the very least, your GP should arrange blood tests and you should raise serum ferritin levels to above 100, preferably 300 as this helps around 50% of sufferers.

northof50
northof50
in reply to Joolsg

Hi, thanks alot jools for all the info! Well ok then it sounds more like rls, but i dont really creepy crawly feeling up my legs, but everything else definitely sounds like rls! My doctor is not taking it serious so i am going to search for a new gp, as the other night I was actually kicking all night at couldnt even function the next day.I live in a small town in northern Ontario, Canada, where there are few doctors and not well informed!

Joolsg
Joolsg
in reply to northof50

Definitely RLS if you were awake and kicking all night.

I suggest you look at all the pinned posts ( at top of page), and read all the info on the main RLS UK website.

As you’re in Canada, it might be worthwhile joining rls.org the US RLS foundation as they have more Canadian members and someone may be able to give you information on a good neurologist.

Or you could consider travelling to one of the US Centres of Excellence- Dr John Winkleman is based in Boston.

Read all you can and print off all relevant info to show your GP.

Sadly, the overwhelming majority of doctors and neurologists worldwide know absolutely nothing about this disease so we have no choice but to become experts ourselves.

northof50
northof50
in reply to Joolsg

Thanks alot jools, really appreciate that.And yes, I will definitely look at joining the u.s. rls site! I need all the info I can get, plus a neurogist to do some tests...for all I know this could have started from being on cymbalta, an absolutely poisonous drug that I have been on for 5 years.

dickJones
dickJones
in reply to Joolsg

Wrong about PLMD as a purely sleep-based condition. It can be experienced in a waking state. I've suffered from it for 6 years. It wakes me up & I am entirely conscious of the powerful flexions that run from foot up into thigh. Each time an attack starts I have to get out of bed & walk up & down until the flexions stop. Each time the process takes between 20 & 30 minutes. I discontinued clonazepam because of its claimed associations with dementia. The only med that has worked for me outside the dopamine agonists (& nothing is worth augmentation, believe me) has been gabapentin. Good luck with any further diagnoses & treatment.

Hidden
Hidden
in reply to dickJones

Forgot about that one. That is PLMW, right? I'm confused as to the difference between that and RLS. Not trying to be difficult here; just genuinely curious and wanting to learn🙂

I know we are just discussing conditions that give the same treatment; it's just interesting to know what the differences are.

How is the Gabapentin treating you?

Doesn't Gabapentin cause you guys to be zombies. I can't function on it and can't find anything that works.

MCTM
MCTM
in reply to Seehowyour

I take 1000mg Gabapentin each night and I certainly don’t find it turns me into a zombie. I’ve tried several different drugs for my PLMD but this is the best for me in terms of controlling the condition without side-effects.

Forgot to include the link about PLMD.

webmd.com/sleep-disorders/p...

As you can see it occurs during sleep and most sufferers are unaware they have it- their partners usually tell them as they end up getting kicked by the leg jerks during sleep. Treatment is the same as for RLS though.

s_gc
s_gc
in reply to Joolsg

Thanks Joolsg, I thought I had RLS for all this time! I just discovered as I don't have problem going to sleep at all that it is PLMD (although it does wake me up with the feeling like I have wooden legs sometimes) and very very occasionally RLS (when seated but usually only for a few minutes)... I am not on medication, just ferrous supplements but so grateful for the community on this forum!! S

Joolsg
Joolsg
in reply to s_gc

Increasing serum ferritin can resolve RLS/PLMD in 50% of cases so definitely worth trying to raise levels above 300. I wish I had known this decades ago as it may have resolved my RLS before I was put on dopamine agonists. I hope it helps.

northof50
northof50
in reply to Joolsg

Hi, thanks jools! I have just spoken to nurse, and she says my iron levels on blood test are normal?! I said ok, I cant help that, I still have serious rls, and tell her I think I need clonazepam or any other benzodiazepine.She says to me, thats not the right drug 4 rls!, it will probably be a dopamine drug that she prescribes.If she does that, I will not get the rx filled, I dont want anymore brain damage than cymbalta has already caused, and I am gonna threaten suicide if they dont give me A benzodiazepine, and I am ready to go public about everything.They are endangering my fucking life!!

Joolsg
Joolsg
in reply to northof50

Please have a look at the post by meddersm, 13 hours ago. Came off Citalopram and now the RLS has completely gone. I still think you need to consider this, but first find a doctor who will listen to you, take you seriously and work with you and a psychiatric team to get you safely off Cymbalta.

Also, "normal" levels for non RLS sufferers are anything above 15. We need much higher so ask for the actual numbers.

Kaarina
KaarinaAdministrator
in reply to Joolsg

I believe this is the thread by meddersm, you are referring to, for northof50 to look at: healthunlocked.com/rlsuk/po...

northof50
northof50
in reply to Joolsg

Ok thanks alot jools, i will call this morning to get the actual numbers.Been getting great tips from you and many others on this site! Tommorow I will get my megaenhance magnesium to try out, also ordered magnesium oil to rub on calfs and bottom of feet, reviews are really good on both products.Tried voltaren emugel last night and found it really helped reduce my kicking last night!

Hidden
Hidden

Hi there!

Sounds like RLS to me. If this is the case, please rest assured that Clonazepam isn't the only drug used to treat this. As a matter of fact, I didn't even know Clonazepam was used to treat PLMD or RLS until reading about it on this site. I was diagnosed with PLMD before I was RLS, for which no mention of Clonazepam was given. I was put on Mirapex.

northof50
northof50
in reply to Hidden

Hi doggymom, thanks for your reply! Yes I read up on mirapex and others in that dopamine class of drugs, but unfortunately I would turn them down as I am on Cymbalta, and the side effects from that drug have caused me serious problems already, but I cant stop taking it because of dangerous withdrawal effects.But thank you so much for trying to help!

Hidden
Hidden
in reply to northof50

Yep, I hear you!!! Total respect to you! We can't let potential side effects scare us. Who knows, it might not happen to us, right? We are so individual.

You're welcome!🙂

Joolsg
Joolsg
in reply to northof50

I’ve just read that you’re taking Cymbalta.

Anti depressants cause or worsen RLS so can you discuss an alternative med with your GP?

Safe alternatives are Trazodone and Wellbutrin.

If you take it for anxiety perhaps a benzodiazepine would be better.

You’ll have to reduce slowly under supervision.

Also, dopamine agonists are no longer recommended first line treatment for RLS because of the huge problem with augmentation.

Alpha2delta ligands like pregabalin and Gabapentin are now first choice amongst RLS experts.

You may find the RLS disappears completely if you can get off Cymbalta.

northof50
northof50
in reply to Joolsg

Ok, thanks for that info..I cant just quit cymbalta, I just recently tried that and was close to calling an ambulance, as you need such a slow taper its unreal.The drug has already caused me rapid eye cataracts, and damaged my hearing so I had to get hearing aids and Im only 59! Unfortunately I cant take gabapentin or lyrica, It was terrible for me.So, the only answer I can think of is clonazapam, I have 2 get a new doctor for that and think thats all I can do.

Joolsg
Joolsg
in reply to northof50

I totally understand. That’s why you really need a new doctor who can treat both your RLS and help you taper off Cymbalta ( extremely slowly and with suitable alternative meds).

If Gabapentin and Lyrica didn’t agree with you, the other classes of drugs are Benzodiazepines ( not the most effective long term), opioids and Dopamine Agonists( although I couldn’t suggest those because I personally had horrendous augmentation and withdrawal and nearly didn’t make it through!).

As you’re in N.America you may have difficulties finding a physician who is willing to prescribe opioids (although they are the most effective long term and safe if used under supervision and at low dose).

I still think your first option should be to see a new doctor who can get you safely off Cymbalta and treat your depression effectively with a safe alternative and/or therapy as Manerva suggests.

The side effects of Cymbalta for you sound terrible and your doctors should be helping you more.

Bear in mind all drugs to treat RLS also have side effects.

I hope you can find a new, knowledgeable GP soon.

This withdrawal strategy worked great for a friend of mine - The Prozac Bridge... psycheducation.org/prozac-b...

Hidden
Hidden
in reply to northof50

Hi again! Just going back over your response to me. I read it wrong, I think. Are you saying that Cymbalta caused you serious problems (so sorry to hear that!), but you can't get off because of dangerous withdrawal effects? Sorry for the mis-read.

northof50
northof50
in reply to Hidden

Thanks, well I just think cymbalta is the cause, Its caused so many other health problems 4 me, but i just cant quit that drug because of all the serious side effects from the withdrawal.Been on it for 5 years, after 15 years of Paxil, cymbalta was supposed to fix my depression and chronic back pain but the side effects have almost ruined my life!

Hidden
Hidden
in reply to northof50

Yep, I hear you! I tried to get off Lexapro 4 different times (each over different lengths of time and at different increments) with no success. Lexapro is a good anti-depressant for me but darn, is it hard to get off of!

I'm sorry for what you've gone through with them!

Hi, just to basically support what Jools and Doggymom write.

Whether anybody makes a distinction between RLS and PLMD in terms of diagnosis, the treatment for both is more or less the same.

Clonazepam can be prescribed for insomnia caused by RLS/PLMD but will have little effect on the kicking.

The current preferred "first line" treatment for RLS/PLMD is, as Jools says, is an alpha 2 delta ligand.

It's better if you can read up as much as you can about RLS/PLMD because there aren't many doctors that know much about it. Certainly, it doesn't sound as if your GP does.

As for refusing to prescribe anything for your condition when there's lots of information about treatments is the pits!

As regards the cymbalta, forgive me, I always write this - antidepressants should only be prescribed for short periods only. Most cases of mild to moderate depression can be dealt with in the longer term by appropriate psychological therapies.

If there is some underlying organic issue, antidepressants may not be appropriate at all.

Please excuse me, I get quite angry at doctors keeping people dependent on these drugs without really offering them any real help at all.

Hidden
Hidden
in reply to Manerva

I've been on antidepressants for way too long. I want to get off Lexapro so badly, not because it doesn't help, but because 1. I don't like the idea of being utterly dependent on it. 2. I want to see if it will help my RLS and 3. I'm on too many meds. as it is.

I was so desperate that I turned to my mom for help since she's had experience with it. She said that Lexapro is extremely hard to get off of and needs to be weaned off extremely slowly. At my dose of 20mg she said that it might take up to a year. It could be that cymbalta is the same way.

Manerva
Manerva
in reply to Hidden

You may be right. I wouldn't encourage anybody to wean off any antidepressant quickly.

It also helps to have a knowledgeable and sympathetic doctor. When I weaned off a SSRI in 2009 and had withdrawal effects, the doctor arrogantly stated that there was no such thing as withdrawal effects and insisted I was having a "relapse".

northof50
northof50
in reply to Manerva

Hi Manerva, thanks for the info, yes I have a poor uncompassionate dr. In this small northern town..will probably be better packing a suitcase and driving 6 hours to Toronto where they have world class doctors!

Manerva
Manerva
in reply to northof50

I'm sure thete's lots of compensations for living in a small northern Canadian town. Sorry doctors isn't one of them.

Hello, northof50. I know exactly what you speak of. I don't have RLS so much anymore, but I do have the jerking. It used to be severe, legs, stomach, arms and shoulders, heck sometimes my neck would get involved.

How bad is your jerking? Do you have to leave the bed after 10 minutes or so? Do you have hyperarousal? A different way to describe it is "Exaggerated Response Reflex". So if there is a little sound, I will jump and overreact, it is a reflex response.

Now that I have dealt with my iron levels, the RLS has gone away and I am stuck with the jerking. It's not bad as it used to be, but it is every night. It goes away when I fall asleep, according to my wife.

Did you go through a phase of RLS or did you just start with the jerking? (come to think of it, my RLS started with the jerking in just my lower legs.... the good ole days, as we call it around here.) When I first read about RLS, I had to tell my Doctor, this is NOT voluntary.

I hope that you can find a Doctor understands RLS. In my case, a fasted morning full iron panel showed that I had Iron Deficiency Without Anemia. I was chronically deficient for about ten years. My ferritin was "normal", 40-60 but I had no iron stores.

I take liquid ferrous sulfate every night, it's a pain. But it helps. My next test is June or July.

Its interesting that all of this started for me when I got north of 50.

Take care, you will figure this out.

northof50
northof50
in reply to WideBody

Hi there, thanks 4 the info, and yes I also have exagerrated response 2 any loud sounds! But try and get a dr. to believe you.I need to see a neuroligist immediately but dr. isnt helping at all.I am better off packing a suitcase and driving down south to Toronto, a 6 hour drive but thats the best place in Canada 4 any serious medical help.

WideBody
WideBody
in reply to northof50

Have you ever done a morning fasted full iron panel? (btw check your Vitamin D too). The iron panel is four numbers, serum iron, ferritin, transferrin saturation percentage and TIBC. All the numbers are important, not just ferritin. My ferritin was always in the low side of normal range, so it never raised a flag. Now that we look back at the labs and it was like missing a beacon! Something so simple is easily overlooked.

If you are iron deficient like I was, the benefits of iron go far beyond just the RLS! Fingernails, color of skin, energy, breathing... just to name a few. Iron is not a drug, and it takes months to get a response and then years to build up iron stores. I started with an infusion, even though I saw immediate benefits, it took months to see the full effects.

Sound is a huge trigger for me. At first I don't think even my family believed me. I am pretty sure they do now. BTW, I take Wellbutrin and Gabapentin. I would like to stop taking the gabapentin, but I feel miserable if I don't take it.

Good luck! PM me if you want to chat. I have dealt with this for a long time. The exaggerated response is very frustrating for me. How do you sleep? Once your asleep do the jerks go away? Do you have them in the morning?

northof50
northof50
in reply to WideBody

Hi, thanks 4 your response.The jerking legs start as soon as I close my eyes, they are so wicked that I fell right out of bed 1 night, on to a hardwood floor! And I cant fall asleep till they are over with, and they can now go for 3 to 4 hours.So by morning I am exhausted!

WideBody
WideBody
in reply to northof50

I understand, and it is every single night. It only lasts 10-20 minutes for me now. It used to be almost 24/7. Check your iron! it's important.

Manerva
Manerva
in reply to WideBody

It's rare to have PLMD without having RLS and rare to have PLMD while awake.

If by RLS you mean the crawly feelings and urge to move and that's gone away, but you still have involuntary movements then really, your RLS hadsn't gone away. It's just got worse.

Many people, including myself, suffer "twitching" as a symptom of RLS and it is involuntary as a neurologist agreed with me.

The twitching itself is unlikely to be an exaggerated reflex response. Reflex responses happen at spinal level and don't involve the brain, whereas you will find that the twitching you experience is cerebral in origin.

Similarly, the hyperarousal caused by RLS is also cerebral in origin and hence again, this is not so much a reflex but a "startle" reaction. So furthermore, if you have hyperarousal, your RLS has not gone away.

As regards your ferritin level, any value above 15ug/L is "normal". However in the case of someone with RLS, it's found that 50% of sufferers benefit from it being at least 100ug/L.

So good idea to continue the iron supplementation.

RLS does tend to get worse as you get older. Another factor is that as you get older e.g. north of 60 the more medications you can end up taking. Many of those medications can make RLS worse.

I'd say we've experienced the same pattern. I had PLMD in my sleep decades ago. It later turned into mild "RLS" symptoms when awake. The PLMD when asleep disappeared.

Decades later my RLS became severe and the crawly urge to move was replaced by twitching. To this day, when I do have RLS episodes, they are almost entirely twitching and have been for years.

Luckily I currently have these under control with an RLS medication, and take no other.

WideBody
WideBody
in reply to Manerva

Thank you Manerva, and as always, very well explained. Funny we use the same word here, "twitching" for my symptoms. Is your twitching confined to your legs, I get it a lot in my stomach, shoulders and even arm, sometimes. The stomach ones cause me to sit up or scrunch up when laying in bed.

I have never had sleep movements, at least according to my wife. I must say, she seems to be able to sleep through some of my bad episodes. :-)

The hard part for me is the first 10 to 20 minutes as soon as I go to bed. I find meditation helps and I can almost feel the twitching turn off. That is when I know it is safe to hold my wife. Not guaranteed, but safer.

Manerva
Manerva
in reply to WideBody

Hi, and yes, twitching in legs, arms, shoulders and abdomen. It spread like that when I suffered augmentation due to taking a dopamine agonist.

Now when it occurs it still affects all those parts.

I take that as meaning taking a dopamine agonist can cause permanent damage.

WideBody
WideBody
in reply to Manerva

My experience concurs with your assessment of DA drugs. It has taught me to be weary of ANY drug. I am glad to hear you are off meds. I am still stuck on gabapentin. Thank you for all your responses. I appreciate them.

Manerva
Manerva
in reply to WideBody

I'm still taking gabapentin too.

It's not causing me any significant problems and manages my neuropathy as well as my RLS.

Don't do clonazepam unless you want to be in a usless numb bubble the next day. Plus it does not directly treat the disorder IMO.

Try Pramipexol (Mirapex). It is a dopamine agonist used to treat Parkinsons. No grogginess. Reduced or eliminated spasms. I have been on it for a long time now. Once I got on it, I felt born again.

Hi northof50

I have the same symptoms as you. I will briefly tell you of my journey. In 1991 was diagnosed with “nocturnal myoclonus” (Now called PLMD). I was put on clonazapam with excellent results. About 7 years ago my PLMD worsened and I was put on baclofen, then CPAP (for sleep apnea) then iron, then CBD oil. All have helped. All are needed to keep my legs from jerking at bedtime and during the night. I did not have any success with gabapentin, ropinirole, pramipexole or rotigotine. I would be happy to discuss further.

northof50
northof50
in reply to Vinagirl

Hi Vinagirl, thanks for responding!Well I thought I had Plmd as well but all the members here have informed me that I have RLS? So now im not sure, lol.But it certainly is serious when your legs start jerking and it sometimes goes all night! Unfortunately my dr. is not helping at all so first thing I have to do is find a new gp, and then go for a sleep study to prove it to them.

Here is a link for the symptoms of RLS, so you can determine for yourself. sleepfoundation.org/restles...

I definitely do not have RLS, although iron supplements (a treatment for RLS) do help.

I Highly encourage you to find a new doctor and get a sleep study because I understand how debilitating PLMD can be.

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