I'd like to take an informal survey to determine how many of you might have developed RLS after using a specific kind of medication?

[Bganim1947]

When I trace my experience with RLS, it came on not long after a failed foot surgery in 2005. At that time, I was given a number of medications for pain that are on the list as triggers for RLS. They include: Nortriptoline and Tramadol, Clonapan, Ropinerole and Gabapentin, both of which I also took together for several years.

This medication train all began right after my botched foot surgery, which left me with nerve damage, chronic tendinitis in my ankles, and severe knee pain as my knees fell without proper support from my ankles.

First I was put on Nortriptoline and tramadol for few years. That's when I started noticing weird sensations in my feet and legs making it difficult to sleep. I saw a sleep doc in 2009, who diagnosed me with RLS and prescribed Clonapan.

In 2010, I got a new GP who looked at my meds and took me off Clonapan, saying it could severely effect my memory and critical thinking. She put me on .5 mgs of Ropinerole and Gabapentin for my arthritis. It worked and I felt great until I didn't.

Over a 2 to 3 year period my RLS got progressively worse. I asked if I could take more when needed for a bad RLS reaction. She didn't like increasing my meds, but agreed because I was in such discomfort.

When it continued to get worse, and I kept taking more now and then, she sent me to a neurologist who immediately upped it to 4 mgs daily of the Extended Release Ropinerole once daily.

That was great for 6 months until last January when I was so out of my mind with pain and wild sensations in my whole body that I went searching for help online and found this website and my wonderful angels, who recognized that I was experiencing augmentation and guided me off Ropinerole over the next 6 months. Most of you know this grueling story.

Now I am beginning to wonder two things:

First, Could the severe withdrawal I had coming off Ropinerole have been my body cleansing itself of all that horrible medication I had been accumulating for all those years?

Second, I am beginning to question if I really do have RLS? Could it have been drug induced? If so, now that I am off all that offending medication, could I reverse this condition now by slowly titrating off Lyrica and tramadol and then who knows?

Anyone have any thoughts to share?

As for my little survey, I wonder how many other RLS suffers might have had their condition initially induced by medication?

It's worth a thought to explore a potential theory that may be crazy, but it keeps rolling around my brain.

[involuntarydancer]

Mine was induced by pregnancy - not prescription meds. It went away after each pregnancy except the last.

Anecdotally, it seems that the length and severity of the experience of withdrawing from DAs is referrable to the length of time spent taking the DAs and the size of the dose prior to withdrawal. I took over 6 months to normalize after reducing and eventually eliminating mirapexin - though obviously the first month or so was the worst.

[Bganim1947 in reply to involuntarydancer]

What are you taking now for your RLS?

[involuntarydancer in reply to Bganim1947]

I struggled to devise a workable treatment after mirapexin. Opioids (OxyContin) worked but then I developed central sleep apnea.

Now I alternate every few week. I use neupro patches - 1 or 2mg daily for maybe 2 or 3 weeks after which the dose seems to become ineffective and I change drug to use Kratom for 4 or 5 weeks by which time (hopefully) the neupro sensitivity has reset again.

I also take pregabalin at times and use cannabis, taken as an edible, to help with chronic nocturnal alertness which I'm not sure is caused by the RLS or the treatment drugs or something altogether other.

Am just about to move to neupro now - sometimes I get a rough day or two when I come off the Kratom.

[Mtbikergirl in reply to involuntarydancer]

Do you just feel it in your legs? I did for a long time and now I think it may be starting in my back… Even between my shoulder blades. Sometimes, I can't stop moving them and it feels like something is crawling on or under my skin. And I get so antsy. Is that what RLS feels like to you?

[involuntarydancer in reply to Mtbikergirl]

That's a really good description of restless legs. And yes, sadly, it can occur in all parts of the body. It is really awful when it comes like that.

Do you find it comes on or becomes more pronounced in the evening/night time?

You should check the list of pharmaceutical drugs that can make it worse to be sure you're not taking something that is inadvertently exacerbating it. Also consider if there are any lifestyle changes that could be causing/contributing to the disimprovement.

Are you on any medication for RLS at the moment?

[Mtbikergirl in reply to involuntarydancer]

I have Lupus, RA, Fibromyalgia, sjogrens, and severe panic disorder so I take ALOT of mess. How do I know if a drug makes RLS worse? Is there a website?

[involuntarydancer in reply to Mtbikergirl]

I think there is a section on the Earls website or you could look on rls.org which has a section. It's definitely worth checking out.

[LotteM in reply to Mtbikergirl]

Hi Mtbikergirl,

Good that you're looking into this.

To add to involuntarydancer, you'll find an overview of meds to avoid or that may worsen rls on rls.org among the FAQs, I haven't seen anything similar on the earls-website.

Also, rlshelp.org lists such meds. You'll find it towards the end of the menu item "treatment".

If you haven't found you specific med, I have a rls book that gives even more info, and you are welcome to ask me to look it up for you. PM me if you don't want to share with everybody.

[involuntarydancer]

I really hope that for you it turns out to be drug induced and that it disappears with the elimination of the drugs.

[Hidden]

I like the way you think.

I don't think it's crazy at all. I've also been driving myself crazy thinking (and hearing, then thinking) about drugs causing this and that. I take some heavy meds. for issues unrelated to RLS and, while I don't think they caused my RLS, I know they are not helping (with much of anything, actually, but I don't want to bore you with that soapbox).

My answer to your first question: it is very possibe. It is impossible to say for certain since different drugs work so differently (extended release, etc.), but it is possible. I'm not a drug expert, but I think your theory has merit to it.

My answer to your second question: I think it can be drug-induced. Unfortunately, I think most things can be drug-induced. I do not have primary RLS, but only developed it through augmentation on the Pramipexole (or so I tell myself because it seems the simplest explanation). I am not so sure about reversing it, though. I'm off Pramipexole, but still have RLS.

Everyone is different, though, so I guess it could be reversible.

It's all so confusing, isn't it?

Anyway...I'm sorry you're having to deal with all that.

Take care,

Jessica

[Bganim1947 in reply to Hidden]

Thanks Jessica. We are all dealing with it, aren't we. It's just so strange that there is no common thread, or is there?

The body is a fairly predictable organism once we know the triggers and commonalities. For those who may have had a drug induced case of RLS, I keep thinking perhaps there is a way back.

I'm a holistic health counselor, and I've found over the years that most ailments and diseases have a starting point triggered by something:it can be genetic, but it can also be environmental conditions, toxins, and medications, as well as the biggie--Stress! No coincidence that most of us RLS sufferers admit that being upset, over- tired and/or stressed-out can bring on our condition.

We know that stress depletes the body's ability to fight or respond to an illness or toxin, etc. We also know that stress activates thoughts and/or actions that perpetuate unhealthy habits. Stress is also triggered by our learned belief systems that keep us trapped in repetitive emotional responses that in turn create constant stress on the body & the immune system.

The body has a remarkable ability to transform and heal itself, so I keep wondering why it hasn't found a way to intercede on this condition.

Sorry to go on so much here, these are all just my over active wondering thoughts.

Hey, another wondering thought--Jessica, where are you and your husband--the US or the U.K.?

[Hidden in reply to Bganim1947]

Neither; we are in Norway. We are both from Texas, though. His job transferred us here almost 5 years ago. We love it!

[Neil46 in reply to Bganim1947]

Hi Bganim1947, I enjoyed your post and I wonder too why our bodies don't heal stress ailments quicker. I imagine with counselling many stress related illnesses can heal fairly quickly or at least be lessened. Maybe because of the emotional aspect we go for drugs that will make us feel better and that overrides our bodies' response and the drugs then cause physical problems to add to the unresolved emotional ones.

Wow, I am also getting over active wonderings! lol

Regards

Neil

[Hidden in reply to Bganim1947]

Oh, cool! Holistic health counselor! Hey, is that similar to a psychomotor pysiotherapist? After my doctor suspected a psychosomatic element at play in me he referred me to one. I've seen her 3 times so far, and my next appt. is on Friday. I'm posting about my experiences if you're interested. Just click on my username and scroll down to the "relaxation techniques" post. I'm learning a lot!

Have you ever heard of Dr. Bruce Lipton? My husband recently came across his podcasts and recommended I listen to them. He wrote "The Biology of Belief"

[Bganim1947 in reply to Hidden]

Hey Jess, The work Bruce Lipton does is more of what my work with clients was about, and what I taught my students in a Holistic Counseling Graduate program at the Univ. I retired from a few years ago was about. Our focus is healing and transformation though the power of the body, mind, and spirit.

Most people don't realize it, but belief systems control our lives in every way, often not in the best way, I will check out your relaxation post in a little while, have to run now.

But one other wondering, haha, what does your husband do that he would know of Bruce Lipton, is it career related? I know you said it was his work that moved you from Texas to Norway--now that's cool, I heard Norway is wonderful! How about you? What do you do in Norway?

BTW: I thought I spotted an American from your posts. That's why I asked. Have a great day over there. 😊

[Hidden in reply to Bganim1947]

My husband listens to a lot of podcasts, so that is how he came across Dr. Lipton's work -- that and wanting to help me. He's such a wonderful guy!! He is an accountant at an oil and gas firm and I am just at home. I tried getting a job shortly after we got here, but it is very difficult for foreigners to get one from scratch. Unfortunately, now that I barely have the energy to do things I can't imagine getting a job.

Yes, Norway is a beautiful country.

[Bganim1947 in reply to Bganim1947]

Sorry, Jess3648 I shouldn't have used your real name. oops.

[Hidden in reply to Bganim1947]

No worries

[Pramipexoleaddict]

Re you survey,

I've suffered from RLS since I was 13 years old, now 61!

Re medication RLS reactions, we all seem to react differently and there seems to be a plethora of causes.

For instance, antihistamines. No effect on my RLS but they have caused tinnitus!

Various foods, drinks and chemicals, both deficient and excess, also have an effect, the only way to determine which ones do what is to keep a record of everything each day.

[Hidden]

I've had mine from childhood, before I can remember apparently.

[Neil46]

There are so many posts about neurologists being over-confident when prescribing high doses of meds. Are they building their knowledge by using us? I hope not.

As I understand it, inflammation is the body's way of protecting and healing what it thinks is a threat. It uses our neurotramsmitters in that process. We have neurotransmitters all over our bodies for different processes (histamine, dopamine etc etc). So maybe a med intended for one complaint also crosses over to another "neurotrack" and may cause a new complaint to start? I don't have enough knowledge to make a case for this.

My own RLS started during a bumpy marriage and went haywire after divorce (many years ago) so stress was my trigger. Still got it but just started on pregabalin so I'll wait and see if that helps.

In answer to your questions: First = yes, I think so

Second: I regularly change my toothpaste brand so bacteria don't "get used" to it, i have also changed my RLS meds. I have no experience of Tramadol etc so I don't know, but maybe the same applies.

Hope this helps

Be Well

Neil

[Joolsg]

Fascinating theory bganim. My RLS started in my second pregnancy and never went away. However, I was always extremely fidgety as a child ( but could sleep without disturbance). I started drugs about a year after that last pregnancy.

There is a lot of anecdotal evidence that RLS is triggered by surgery so I suspect nerve damage and inflammation plays a big part.

I think mine is primarily caused by scarring in my spinal cord and brain from the MS lesions but I agree with you that it seems to have been made worse by all the drugs I have been put on over the last 15 /20 years.

Even now, with oxycontin and pregabalin, I get RLS every single night but manage 7 hours disrupted sleep.

Stress is definitely a trigger.

I suppose the only way to find the answer is to come off ALL drugs for at least a year and see how our bodies react. That's a scary thought for most of us. What if we don't sleep for months?

[Elles5]

Mine started in my late teens maybe before as I could never sit still and I could never sit in the middle of a row of seats I always needed an aisle seat in case I had to stand. Your comments about botched foot surgery worried me, two weeks tomorrow I'm having foot surgery!

[Bganim1947 in reply to Elles5]

Please don't worry. My failed foot surgery was a fluke preformed by a foot surgeon who had operated on me without cause. 6 weeks after the procedure, I left him, because I could feel 2 days following the surgery that something was very wrong. When I went to another surgeon, he looked at my MRI and said I never even needed that operation. My tendon wasn't torn, as the first surgeon told me, it was simply frayed. The second surgeon consultant said he would have just put my foot in a boot for a month and it would have healed.

Now I know to be sure whatever my condition is to just ask the right questions before I agree to surgery. Those questions are: Is this surgery absolutely necessary? Or is there an alternative way to heal or correct this condition without surgery, even if it takes time to heal it?

I was so impatient to be rid of the pain when I thought I tore my arch tendon, that I trusted the first surgeon I saw. Because of his apparent desire to operate on anyone, I lost fifteen years of full support from my feet, ankles and knees —if one goes, they all go. A boot or even a cast for a month, as one other surgeon suggested, would have been the least of my concerns over time.

If you know you need this surgery, Elles5 then don't be afraid. I was one person with a failed surgery out of an enormous number of people who get foot surgery every day without a problem. Just insist that your surgeon take's an x-ray at some point following the surgery to be sure it is healing correctly. Much later I found out that my surgeon should have done that when I complained that something wasn't right. He put a pin in my arch to hold it up and it slipped out. I could feel it. You have a right to ask for assurance that it is healing properly. Feet are very complex. I know now that I have to be my own advocate for quality healthcare.

Good luck. Please let me know how it turns out.

[Elles5 in reply to Bganim1947]

Thank you for being kind enough to put my mind at rest. I have bone on bone in my ankle joint and have been stuck in a great big boot for weeks. Due to have the joints fused together in two weeks. It definitely needs doing!

[Yorgi1950]

My RLS started shortly after returning from Vietnam in 1973. I believe it was the result of being exposed to Agent Orange, but I can't prove it.

[Mtbikergirl in reply to Yorgi1950]

That agent orange is one of the worst things that ever has happened to our soldiers. My father was in the 1st Cavalry division and also was in the 82nd airborne division in Vietnam and he was covered with that crap. He died nine years ago and he had had cancer seven times! BTW, thank you for your service and helping to protect our freedom!!

[Gidgetmoondogg]

No, not my experience

[Mtbikergirl]

I don't know if mine was or not, but I was also on Klonopin and gabapentin. I don't know about my RLS coming from those medications but I do know that gabapentin has literally eating my teeth. I saw a dentist and had three cavities before they put me on the gabapentin. Six months after that, I went to the dentist and I have 19 cavities. Here it is, three years later from beginning gabapentin and I have to have what's left of my teeth pulled and get dentures at 40 years old. My teeth are literally falling out of my mouth and breaking in half.....even when I eat noodles or bread???? Has anyone had this problem from the gabapentin?

[michou]

I first got RSL in 1971 when as a hippy I and my friends were all into recreational drugs - some heavy duty. We did not call it RSLs then but The Worms. We all saw it as a side effect of taking Mandrax (methaqualudes) and everyone who took this drug got it.

It can't have been coincidence taht we all got RSL and everyone linked it directly to these pills.

I stopped taking drugs altogether very shortly afterwards and for years thought that the restless legs I still suffered from were a direct result of having taken those pills; I have had RSL ever since on and off - mostly on; and never been able to work out why it has stopped at times.

It definetly gets worse when I drink which I try not to.

[Spudsuzzy]

On lots of meds now but i had RLS before being on the meds so not related in my case.