Restless Legs - Any suggestions as seen many doctors and medications

@SusanEllen66 The only thing that eases the misery of RLS
for me is pramipexole 0.50 or 0.75 mg (prescription).

@rjjb yes, that is what I have been taking.

@SusanEllen66 Thank you Susan. My biggest problem with RLS had been a lack
of sleep. Pramipexole give me a reasonable amount of sleep.

@missjb @vikkitennis @darkflowa23
I Enjoyed Reading All of this especially because Suboxone is one of the prescriptions contributing to my RLS, so it definitely doesn't help me in that aspect. I also take sertraline which also is known to cause RLS but only in 5% of patients. After reading I had to see if Suboxone was really used for treating RLS and what if found was it's paradoxically used to treat severe RLS. Also note suboxone is abused by addicts still and can cause a high & cause dependency it's just less likely then other opioids & due to its ceiling effect it won't go beyond a certain point. I know of a few people that both snort the pill version of Suboxone & those that have the films dissolve into water and inject it intravenously....they say the Naloxone will cause instant withdrawal but unfortunately buprenorphine is the only opiod that its not as effective on you need to take a much larger amount of Naloxone to get Buprenorphine knocked off those receptors, thats why Buprenorphine is good for addicts because the other opiods cant attach to the receptors while bup is in ur system. For Opiate Naive People or those sensitive to opiates even a small amount of Suboxone or Buprenorphine can cause an Overdose even potentially killing them. Buprenorphine is stronger then Morphine but like said safer cause it hits a ceiling and won't go any higher, this is where addicts who have tolerance to opiods and quickly lose any "high" or dont feel it at all from buprenorphine & most make the mistake of taking more suboxobe to try to increase the high, well why more bup isn't going to do anything cause the ceiling, they are also increasing the amount of Naloxone which then knocks Buprenorphine off the receptors causing instant withdrawl. So just their nature of seeking a bigger "high" triggers why they put naloxone in Suboxone...creating the anti-abuse side of things but I heard of those that purchase suboxone illegally & only take it occasionally to reduce chances of becoming tolerant while injecting only a small amount so they dont get too much naloxone & they are content with the milder high and pain relieving effects of buprenorphine.

I became physically dependent on opiates after a Broken Shoulder, I've never inject Suboxone or Any other Drugs, but the ER missed that my shoulder was also Dislocated until my follow up with a Surgeon almost 4 weeks after they injury, originally surgery wasn't suggested but after finding out my arm was dislocated (explained the pain I was in and why I could barely move my arm after almost a month of healing) I had ORIF Shoulder Surgery where I got a metal plate, 9 screws, and a metal cable put in my arm. I needed the pain meds to even attempt to sleep but almost impossible at 1st but once pain became manageable I found myself to have severe withdrawals so I started the Suboxone Program....I found that I found my self kicking the air, tossing turning, sudden urges to move my leg I tried to force them into places they couldn't move but it would just drive me mad, usually always kicking off all my sheets, they gave me trazodone but it made me severely dehydrated & woke up within 1-2 hours and afterwards my RLS would be worse typically causing me to not fall asleep until early morning or just having to force rest my eyes while I constantly moved into different positions throughout the night.

What I did find though for me Gabapentin did help with my RLS that was caused from Suboxone, I don't take trazodone anymore because of the side effects I had....while it doesn't always work I find it Gabapentin gives me more relief then I had so I'm happy with that until I can hopefully taper off the Suboxone as I was told that I very well may become dependent on it as well but the withdrawls are considered much more mild and manageable then other opiates.

It just shows what works for 1 person, Doesn't necessarily works for Everyone.

@kaakenath Hi kaakenath, What an interesting post. Thank you for sharing so much information. I didn't know that much about Suboxone from a "treating addiction" standpoint.

I believe I am the only one on this forum prescribed Suboxone---others take buprenorphine just as buprenorphine. My doctor prescribes buprenorphine as Suboxone bc it is less expensive that way.

I spent years thinking my RLS was a muscular problem. It presents as an aching pain. My primary doctor thought (for a short while) it was due to spinal nerve damage and prescribed pain medicine. As soon as she realized it was RLS, opiates weren't an option, but I learned--for me--that is what works.

So, for me, buprenorphine has given me back the ability to sleep. For this I am eternally grateful. After years of sleep deprivation, being able to sleep is a priority for me.

Gabapentin and pregabalin didn't work for me. Neither did the iron IV.

My doctor said some RLS researcher thinks "painful RLS" is what needs opiates/opioids for effective treatment. Evidently, only a small percentage of people with RLS experience it as painful. This is just a theory, but it is interesting.

I do wonder if all RLS is actually the same disease.

You are right that other drugs can exacerbate RLS symptoms. I just got finished taking antibiotics and I swear a spell of bad RLS symptoms was caused by this. It's nothing expected, but my doctor didn't discount it.

What is known (and more universal) is that antihistamines, antidepressants, antianxiety drugs can make RLS worse. It seems like a mine-field of possible drug interactions and maybe specific to the individual.

I think anyone could develop addiction problems, depending on the circumstances. Chronic pain--particularly severe pain--is another whole dimension and force. It sounds like you have been through a lot.

That fact that gabapentin works for you is wonderful! After all you have been through, you certainly don't need RLS interfering with your sleep.

Thank you for sharing. Thank you for telling us more about Suboxone.

Before trying more drugs please talk to your doctor about magnesium! It has helped me so much with RLS! I take Magnesium Glycinate each evening. Magnesium is known for relaxing the muscles in our bodies.
I hope it helps those who suffer from RLS! Good luck!

Another RLS sufferer here (30 years, walking the floors, genetic component high.) Completely agree that what works today won't work tomorrow. My RLS would laugh at compression stockings, warm baths/heating pads, stretching, etc. I take 900mg gabapentin and 1mg pramipexole. The one medication that really worked for me was the Neupro patch but sadly my skin hated it. I also have lumbar spine problems that are diagnosed as severe but I have not had surgery (yet!) The meds have reduced my RLS greatly. If I avoid triggers, I forget it have it.
Here is what I found exacerbates my RLS:
Artificial sweeteners found in soft drinks. This is a biggie for me.
Chocolate (insert crying emoji)
Any kind of high intensity exercise.
Any kind of exercise that overly stresses lumbar spine (seeing a connection here!)
Sitting in one place for long periods of time (car rides, air travel, etc)
Fatigue (I also suffer from insomnia but not because of RLS Must constantly monitor energy levels throughout the day.)
Stress which is made worse by fatigue.
RLS is awful. I hope you can find some relief!

I take tramadol. Thats the only thing.that works plus leg flexing and no sugar! Sugar is a big one. And again the less i move during the day the worse it can be at night in bed I flex my feet back and forth 40 times. It helps

I noticed that you said that sometimes your arms move, also. You may have PLMS (Periodic Limb Movement while Sleeping--the name may have changed). I've suffered from that for 30 years, & tried many meds (that didn't work). The only thing that works is Clonazepam. Docs are reluctant to prescribe it because long-term use can have unwanted side-effects, and it is highly addictive. You build a tolerance, so you must slowly ween yourself off, occaisionally, then re-start. If I stop taking it, I don't sleep. You have my sympathy. Good luck.

@azdogmama
Hi azdogmama. I really identify with over-exercising and over-stretching as triggers! You are the first person to also post this description, but I wonder how many others experience the same phenomenon.

Under those conditions, nothing helps me during the night. Of course, the "over" part often cannot be figured out in advance--so I try to be very careful (not always successfully). When something prevents me from exercising for even a week, re-starting exercises is scary because I don't want to upset the stability I have gained in managing my RLS.

Also--like you--extended time in the car sets me off, but that is immediate and doesn't seem to influence symptoms that night. We just got back from a car trip and both going and coming home, it was two and a half hours and BOOM--symptoms set in.

Also, like you, over the years my RLS symptoms have worsened and become harder to manage.

I gave up chocolate AND sugar at one point (for a couple months), but for me, it made no difference. (I sympathize with you--but at least you know to avoid chocolate.)

What really, really has helped is adding the Nidra bands to my regime of medication and avoiding stress at bedtime. For me, truly successful treatment has been this three-prong approach.

Nidra is made by the Noctrix Company in California. I read about them in the medical literature and then got them 13 months ago. Not only do they work stopping symptoms as they occur (except when I have over-stretched) over time they re-programed my brain. After many months of using the Nidra--this brain-reprograming takes time--twice I have gone over 20 nights (in a row) without RLS symptoms, at all. None! (Can you imagine?)

To get these bands, you need a medical prescription--then insurance should pay (my medicare and supplemental do). The Nidra is an expensive, well-engineered medical devise. Nothing you can buy yourself.

I understand from another poster that her Medicare Advantage plans refused to pay. (Advantage plans are another whole story)

The Noctrix company has a bunch of YouTubes that should explain how they work they better than I can. Anyway, I swear the Nidra has been miraculous for me (along with taking medication and avoiding bedtime stress).

I would never have believed that I could go through entire nights without RLS (let alone a long string of night after night)--but this is true.

Another warning is that an expert RLS is better at prescribing (in a way to get insurance to pay). I think the expert is better at giving history (all the different medications etc that were tried--unsuccessfully or with only partial success--plus the negative effect of sleep deprivation on our lives) than the family practice doctor or internist.

Medicare didn't buy them for me--they rent them. And, insurance also pays for the sticky pads that are changed weekly.

I share this information because it is so wonderful to sleep. I came back from the brink (realizing death would be better than the sleep deprivation I was suffering and the low point when I cried and cried without being able to stop).

My RLS was severe--occurred multiple times each night (even with medication)--and it hurt. Last night, I slept 7 hours and my Fitbit gave me a sleep-score of 89 (90 is excellent--89 is "high good.") I hope by sharing my story this information will help you. Sleep deprivation is torture.

Best of luck to you, azdogmama!