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Severe RLS solved for me
The following is a true story without embellishment or exaggeration.
I’ve had RLS for 35 years now. It got worse over time and is very severe now at the age 69. It is the worst RLS symptoms my sleep doctor has seen being in the top 1% of severity from here experience.
In the years preceding finding my current sleep doctor I was getting three to four hours of sleep a night. I tried every RLS medication out there (with one exception explained below). Gabapetine and Requip were zero percent effective. OTC pain meds like aspirin, acetaminophen and ibuprofen did nothing. Tylenol PM and others like this wired my eyes open. High doses of magnesium also did nothing. I was tested for low iron. This was normal but I took iron supplements just the same. I then found a doctor who prescribed Pramipexole. I started out at .375 mg and got enough relief to sleep about six hours per night for four or five nights a week. What a relief to get some restful sleep after years of struggle and misery. I shelved my plans for moving to Oregon for doctor assisted suicide. Yes, it was honestly that bad for me.
Over the next years the Pramipexole worked well but I had to gradually increase the dosage as augmentation set in Eventually I was up to 1 mg/day (taking eight .125 mg tablets) but the effectiveness had decreased significantly. Taking even higher doses was having negative side effects with no RLS reduction benefits. At this point I was back to four hours of restless sleep per night. I stated augmenting the Pramipexole with several ounces of alcohol at around midnight to 1AM just so I could pass out and get some sleep. This continued on for about another year with varying effectiveness. The trajectory for this regime was bad, obviously not a good long term solution. Completely sleep deprived, drinking on a regular basis, legs thrashing when I laid down, pacing endlessly most of the night to get relief, only to fall into a fitful sleep at two, three or four o’clock in the morning, sometimes seeing the sun rise before collapsing into exhaustion. Emotionally I was a wreck, would break out crying in despair, no sex life or relationship with my wife. I started once again planning my move to Oregon for physician assisted suicide. I could no longer live like this.
Enter the solution for me. Miraculously I found a sleep doctor/specialist who dedicates her professional life to this affliction. During my initial visit she took an hour and a half listening to my RLS journey and asking probative questions. As noted above I had tried everything and I was at the end of my rope. Doing due diligence she ordered the normal tests, a sleep study (which was an abysmal failure since I didn’t sleep) and started me on the normal medication regimen (Requip, Pramepexole, Gabapentin, magnesium etc., etc..) all to verify that nothing worked. Finally, as the medications of last resort, she prescribed Neupro 2mg/24 hour patch, 5 mg methadone and 300 mg of Gabapentin daily. The patch stays on for 24 hours and the Methadone and Gabapentin are taken after dinner. After some trial and error the dosages were increased to 3mg patch, 10mg Methadone, 600 mg Gabapentin and daily magnesium citrate. The results were nothing short of miraculous. In my 35 years of having this horrible affliction I’ve never this much relief from RLS. Things are still not perfect I can finally lead a near normal life and get a decent nights sleep most nights. Thank god I found this doctor or I would not be here today.
Important things that are now part of my regimen and contribute to the effectiveness of the drug protocol.
1. I exercise on a daily basis. I lost 10% of my body weight through diet and exercise bringing my weight down into the normal range for my height and physical build. This helped.
2. I have dinner early and do not over eat. Not having a full stomach at bedtime makes a difference.
3. I take powdered fiber with lots of water at breakfast and dinner to control the constipation from the Methadone.
I hope this post and my contribution here can help someone else to get relief from this horrible affliction.
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I've had severe RLS for MANY years. The only thing that gives me
some relief is pramipexole 0.75 MG (prescription). Like you, I was
having death wishes because of my lack of sleep. Pramipexole is
no cure, but I do get a reasonable amount of sleep now.
I take one tablet every night.
Pramipexole worked for over ten years until augmentation set in. At that point no amount of it gave me any relief. I stopped taking it for over two years and tried it again. Unfortunately it did not work and I had to resort to Neupro.
Your story is inspiring, since I also have RLS and thus severe sleep deprivation. I am glad you found relief with a drug protocol that seems to work for many people. I attended a RLS support group just today and heard several people talk about this drug therapy. I also augmented on pramipexole, so I quit cold turkey and started trying to find a more natural way to treat the symptoms. Unfortunately, I don’t think such an approach is viable, but I just don’t want any more meds. I would love to share your story if that’s okay with you
@reillyg1013
Share my story if it will help. I hate doing meds but it is the only choice I have if I want to live. I don't say this lightly. I was so close to taking my own life because what I was going through was not living, not even existing, it was 24 hr/day agony. As I stated in my initial post I tried every medication and life style change there is on the books. Since my last posting I have stopped the dopamine agonists per my doctor's recommendation. Evidently the latest clinical data has shown dopamine agonist to have significant long term adverse affects but the Neupro was augmenting anyway and become much less effective. I am now on only one medication, 15-20 mg of Methadone per day. I hate it. I cannot stop taking it without severe withdrawal symptoms and horrible RLS recurrence. So I live with a dependency on Methadone and the resultant perpetual constipation side effect. The Methadone does keep my RLS in check and I can lead a mostly normal life. Without Methadone I'd be dead and this is not hyperbole.
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1 Reaction@zombiewoof
So many people do not understand it when you tell them you have RLS. They make comments like oh yeah, I get the jimmies too or yeah I get cramps in my legs. RLS is nothing like that, it literally ruins your life because you never sleep and the anxiety is overwhelming. I don’t go on vacations if I have to travel more than 3 hours by car, and even at that, I let the driver know I have to stop and walk around at least once during the trip. I refuse to get on a plane because of my fear of having to sit for too long.
Several of the people at the support group were also on methadone and said the treatment along with other medications was working.
I applaud your bravery and I’m so happy that it is working for you.
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1 Reaction@reillyg1013 glad you have found some relief. I don't have RLS but get a max of 5-6 hours of sleep a night. I see you said you take magnesium citrate. I was told that isn't the best for sleep, that magnesium glycinate is better for sleep. I've been taking magnesium glycinate and have seen some improvement. Have you only used magnesium citrate or have you also used magnesium glycinate and if so, do you notice a difference.
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1 Reaction@helene0886
I never tried magnesium citrate, I’ve only taken magnesium glycinate under direction from my endocrinologist. It did not help whatsoever even though it is meant to help with sleep. I tried for over a year to see if there was any benefit with it, but alas, no. I often have paradoxical reactions to medication both OTC & prescribed.
RLS is very sensitive to medications, especially antihistamines, antidepressants & sleep meds.
@reillyg1013 sorry, I thought I was replying to @zombiewoof who mentioned magnesium citrate in their post.
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1 ReactionGets very confusing on here sometimes. @zombiewoof is doing the standard protocol for RLS which seems to be helping thankfully.
Seasons Greetings to All!
I hope others on this board will be kind enough to answer some questions I have had for a while.
I would appreciate your help so I can understand my situation better.
This is a long post--mine usually are--and I thank you for reading it.
My RLS took 10 years to diagnose because it seems my symptoms are atypical. RSL creates pain for me, not twitching.
An aching pain that (most often) escalates and builds and increases within minutes of onset. For me, that is a cardinal feature--the pain continues to increase and increase in severity--unless I can get it to stop.
Would any of you describe your RLS symptoms as pain?
Even if your symptoms aren't pain, do your symptoms increase in severity during the course of a RLS episode?
Recently, I spoke with my sleep neurologist and he said there are currently RLS doctors specifically researching painful RLS (which is known to be less common--although not so much known by me--why I am asking you all questions). (Also, he said that maybe the underlying cause of painful RLS is different than the typical RLS associated with low iron in some area of the brain. This makes sense, because I never responded to the iron IV treatment.).
My RLS pain is in the back and sides of my thighs (worst on the left leg) and sometimes extends up my left buttock to my waist.
Anyone else have RLS symptoms not in their calves? My calves are very tight--like Charlie-horses--when I have RLS pain--but the pain isn't centered there--I don't consider my calves actually involved in RLS-- or only very peripherally involved.
And, I very, very rarely have any actual twitching. Do your legs twitch? A lot? Your calves? Or your whole leg? Both legs at once? One more than the other? Move involuntarily? Descriptions I've read on the internet aren't specific enough for me to understand what it is really like for most people. Please tell me.
I also wonder if any of you have looked into getting a Nidra device (now available in almost all states)? I've had mine since April and it works so well EXCEPT when the pain is very extreme. I'm curious if it works better for folks with twitchy RSL (instead of the painful variety). (I'm not knocking these bands--I now have frequent nights with no symptoms--and I credit the Nidra bands--using them over time--these nights with no symptoms rarely happened until I started using them).
My final questions are about how sensitive to over-exercising or over-stretching any of you are. This is my downfall. And, it takes very little "over" for me to create a bad symptom night. What I call a "bad night" is when I can't get the pain to stop for hours--it can go continuously for hours and hours with only short periods of sleep in between RLS episodes and I basically end up with very, very little sleep.
I'm recognizing my "bad" nights now are directly caused by over-stretching/over-exercising. And after one day of "over-something" I can have 5 bad nights in a row.
The medication and Nidra work perfectly, unless I have over-done some physical activity.
I wonder if this is something all people with RLS struggle with or if those of us with painful RLS are more prone to have---or those of us who have gotten out-of-shape (because sleepless nights have made us too tired to be physically active). ???
I'm struggling now because my RLS is mostly well-controlled, so I'm trying very gently to increase physical activity, stretching and some exercise (mild exercise) but this activity has led to severe symptoms recently--which then caused me to be inactive until the symptoms improved but when I tried to exercise, again, I aggravated my RLS once more with some kind of "over" (doing too much).
Do any of you have this same kind cycle? Any luck breaking it?
I don't have any day-time muscle soreness. But, boy does it affect my RLS at night.
(I'm working with a physical therapist and, really, I'm not doing anything that would appear to be "too much"---but darn it--it is!)
Again, I would very much appreciate hearing from as many of you as have time and energy to respond. If my RLS is "different" it would be helpful for me to understand how it is different.
I want to fight this every way I can. I have already lost too many years to sleep deprivation. The quality of life (and longevity) I strive for includes having more physical strength and fitness.
Please, I would appreciate knowing if anyone else has had this struggle. Months ago, I was much more "fit" (for an old person). Now, trying to increase fitness creates this cycle of more RLS struggles and then less fitness. Do any of you identify with this description? Is there a good way any of you have dealt with it?
I look forward to your replies. And, thank you for reading my long post.