New Joiner here - 25 YR old with severe PLMD/RLS

[gohoos1998]

Hi all - I posted this under 'prescription medications' but then realized there is a specific 'new joiners' page. I am new poster (25 yr old male) who has had RLS for as long as I can remember. It was never a major problem, but as I reached middle school and then high school, I realized that I was extremely tired. It was a "boiling frog" situation - it was a slow burn and thus I never realized just how bad it was. I was taking naps at lunch in the library. I would need a nap everyday I got back from school.

I got to college and was able to dictate my own schedule (I long for these days!). I didn't go to class as much as I should've, but still did well in school and it wasn't an issue. Anyway, as I graduated and started working a normal 8-5:30 job, everything took a turn for the worse. My brain fog was extreme - no focus, no concentration. It took me much longer to do the simpler parts of my job than it should've. Anxiety was also terrible. Would almost fall asleep at work and a nap after work was non-negotiable. I can barely sustain enough focus/clearness of mind to read.

If you're not interested in the backstory, feel free to start here. Fastforward to 2023. I got a sleep study and was diagnosed with sleep apnea and severe periodic limb movement disorder. I had almost 300 of these movements in just 4.5 hours of sleep. I was being aroused from sleep 36 times an hour between the two disorders. I know many of you can relate to no/poor sleep and understand the toll it can take. The apnea isn't too hard to treat. The PLMD is, and this is why I'm here. I understand RLS and PLMD are slightly different, but treatments are largely the same. I have some questions on all your experiences and would love any/all input. I have already tried a DA (ropinirole) and gabapentin/lyrica (made me feel like a zombie/space cadet, even at relatively low doses).

1. Has anyone been on low doses of pramipexole (0.5 mg or lower) for an extended period of time (5 years or more)? Looking for people who have not had to increase dose/have not augmented (which inherently go together).

2. Has anyone had success on low doses of opioids for at least a decade? Have you noticed any issues/side effects not related to RLS? I really would rather not go down this route, but with the RLS/PLMD dose being much lower than that used for chronic pain, it does feel like it's a relatively safe option.

3. May as well add this last question while I have you. Has anyone had success with Neupro? Both with RLS and with lack of side effects? I have read that this may stave off augmentation because of steady dermal delivery, but it is still a DA after all.

I used to be a relatively smart person. Maybe I still am, but it doesn't feel like it. I have a lot of dreams. I want to go get a graduate degree. In the future, I want to have kids and be a good Dad. At this point, I cannot/would not be able to do these things. I am quite desperate - that may be obvious. I gotta get this right. Thank you all for your input here.

[Rustsmith]

First off, take a look through the document that the link in my signature points to. It will answer many of your questions.

Second, pramipexole and Neupro are the same class of medication. Pramipexole is been around longer and Neupro is a time release med. Both work very well but eventually will stop working via a condition called augmentation. Withdrawal when you stop either of these meds can be hell (much worse than opioid withdrawal).

Third, low dose opioids work great but finding a doctor who will prescribe them is often near impossible. Even the experts will insist that you fail the three other tiers of treatment described in the document before they will let you try it. Thankfully, low dose opioids work well for years. Yes, they all have side effects (constipation is the most common) but that is why there is more than one opioid.

Finally, I deleted your duplicate post in the other forum (that is one of the roles of the moderators).

[gohoos1998]

Hi Rustsmith,

Really appreciate your response. The Mayo Clinic link in your signature is fantastic. I've read RLS information on the Mayo Clinic website but somehow have not found that specific page. Much more in depth.

I was hoping that Neupro, despite also being a dopamine agonist, would be more useful because of lack of augmentation. But it ultimately seems like DA's should rarely be used unless the patient absolutely NEEDS relief in the short term.

It seems like you I may have better luck with opioid prescription from an RLS specialist who really understands the plight opposed to an PCP or even a general neurologist. Especially for a 25 year old. I don't want to go down this road YET but I am starting to accept the possibility.

Apologies for the duplicate post - thanks for keeping the board clean!

[Rustsmith]

When Neupro was released for widespread use, there was hope amongst the RLS experts that its time release properties would avoid augmentation or at least greatly prolong the time for augmentation to occur. I had just augmented on pramipexole after 12 months when Neupro came out, so I was one of the early adopters. Unfortunately, I augmented on Neupro after 15 months, not much of an improvement. Also, Neupro frequently has a problem where it causes a skin rash that some individuals have a hard time recovering from. Everyone has to rotate the application site over a two week period, but that wasn't long enough for some people. Finally, since Neupro is still under patent protection in the US, it is far more expensive than pramipexole or ropinerole.

As for low dose opioids, finding a doctor willing to write the prescriptions pretty much comes down to a matter of luck and hard work on your part. I see an RLS specialist, but she is located about 90 miles away. I therefore depend upon my GP to handle writing my monthly prescriptions based upon my specialist's guidance. Due to retirements, I am now on my third GP and it took me 12 months to find my latest doctor.

[gohoos1998]

Gotcha. Thanks for the additional information on Neupro. Doesn't necessarily seem worth it. I've had a lot of trouble with weaning off medications in the last few years and I'd rather not add another one to the list.

Agreed - just got to take initiative on this. Luckily, I'm in NYC and there's plenty of doctors here. I tried to get in to the office of a world-renowned doctor who specializes in movement disorders of sleep - exactly what I need....no availability until August of 2025. Insanity.

There is another RLS specialist as designated by the RLS foundation that is taking patients and will call them this week. Thanks again - much appreciated.

[Rustsmith]

The problem is that there are too many patients with severe and very severe RLS and not enough doctors who understand how to manage it. That is the reason for the recent Mayo Clinic publication with the updated algorithm for treatment. Also, there are far too many GPs and neurologists who have not kept up with the times and have given their patients doses of the dopamine meds that are far beyond the FDA approved max for RLS and then have no idea what to do. I have seen too many people report that their doctor washed their hands of them and told them "I don't know anything more to help you". If that doctor would just do a bit of research rather than throwing the patient under the bus, it would be much easier to get appointments for those of us who need help from the experts.

[gohoos1998]

Totally agree. I'm not sure why such a large percentage of doctors (not all of course) don't want to go the extra mile for their patients. There's an extreme barrier to entry for doctors (time, energy and money), so you'd assume most really wanted to get into the profession because they truly care.

Unfortunately, we just have to play the hand we were dealt here.

Are you cured/at least stable at this point?

[Rustsmith]

The problem for most doctors is that they are no longer self employed and their employer (either hospital or clinic) dictates the number of patients that they must see each day. There is also the problem where some doctors have such inflated egos that they are not willing to research anything in the belief that they learned everything that they needed to know in medical school and residency. These are the doctors that are put off either by Dr Google or patients that have done their own research and want to discuss treatment rather than listen to the doctor's instructions. Fortunately, there are a number of doctors who really do care,

As for the barrier to entry for doctors, that is a bit of a misconception that is pushed by the doctors. Yes, they have a number of years of school that often leads to staggering student loans. But I am a retired engineer and for engineers to get beyond an entry level position, it also requires years of study as well as years of experience before you can get to a specialist level where you can practice independently. An engineering license requires five years of college plus another four years of work under the direction of a licensed engineer while also continuing to study to take the licensing exams which have a very low rate of passing. When I got my license, I had to have ten years of practical experience just to apply. Without a license, you cannot work independently like a doctor or dentist with a free standing practice. Attorneys and CPAs are required to have more than a simply four years of college before they can work on their own. The only real difference with the cost of medical malpractice insurance. Other professionals also are required to carry malpractice insurance, but it isn't as expensive. The joke among engineers is that a mistake by a doctor kills one person while a mistake by an engineer can kill hundreds or thousands (think bridge collapses or the levee break in New Orleans).

As for my RLS, it has been relatively stable since I started taking a low dose opioid about 7 years ago after augmenting twice and suffering for years before diagnosis and while waiting to get onto an opioid. However, to maintain control I take an oral iron supplement, a very low dose of pramipexole, gabapentin and a moderate (for RLS) dose of methadone each day.

[ViewsAskew]

I am so sorry to read your story - it has some similarities to mine. I've have had PLMs since I was a toddler - we just didn't know what they were. But no one would sleep with me, my bed sheets were in extreme disarray from the movement, my mom said I kicked a lot, and I've never awakened and felt well rested. My mom said I would put myself down for naps when I was a toddler - heck, I was probably tired then!

After college I worked in restaurant management - nights. I went back for grad school in my late 20s and the morning work started when I finished. It was so hard. I also have RLS/WED - but it was always very mild. My family - mom and uncle's, grandmother, nieces - have that. Dad had PLMs - he didn't ever find that out before he died. Mom just self reported it to me a few years ago in one of those, "By the way, your dad kicked me at night," kind of things.

I don't have apnea. My study results were similar to yours - I also had over 300 movements in a study that lasted a few hours. It's brutal - so I totally get where you are.

Unfortunately, I went for that fateful sleep study about the time they thought DAs solved everything and augmentation was just starting to be understood and not many docs knew about it. So, they gave me a DA. I augmented in 7-10 days. I just know it was less than 2 weeks because at my 2 week appt, I said that I now, oddly, had RLS/WED every night. He upped the dose. For many months, this egotistical jerk kept raising my dose until I had RLS/WED 24/7. At one point, my sleep occurred in a few minutes here, a few there, for a total of 20-60 minutes per night. And I developed PLMW - movements during wakefulness - in addition to PLMS - movements during sleep.

I won't bore you with the many year story that follows and all that came with it. I found the RLS Foundation and this board, I was eventually able to work part time again, I moved to California to be by one of the best docs we have, and my life, though very different, is again livable.

I wish you the best on your journey. The folks here are knowledgeable and helpful. Keep us informed of your experiences and how it is going. Steve has already given you great info. I just had a telemed appt this morning with Dr Buchfuhrer - we've been trying to switch meds for me - and my PLMW has increased quite a bit. He said that, unfortunately, nothing works as well as the DAs for PLMs. That is definitely true for me.

There is some research - doc is out of North Carolina, IIRC - about a DA that may work without causing augmentation (it's about what receptors are hit by the medication). It's still early going, but in the next few years, we may have another option of a DA that truly doesn't come with the augmentation specter.

[Rustsmith]

The doctor in NC has a new class of drugs that are still experimental that have the potential to reverse augmentation. A single clinical trial has been completed and reported. The current dopamine agonists used to treat RLS influence the D2 receptors in the brain and spinal column. This new drug treats the D1 receptors in the spine. The idea is that our current meds over stimulate the D2 receptors and this new D1 drug stimulates the D1 receptors which act a bit like brakes for the D2 nerves. If true, this new drug would help balance out the dopamine nerves and allow us to use the D2 meds for longer without fear of augmentation. But more work is needed with a larger clinical trial before they could hope to get FDA clearance to general use. That could take many more years.

[Vadowa]

I'm really sorry to hear about what you're going through. It sounds incredibly tough dealing with both sleep apnea and periodic limb movement disorder. I haven't been on pramipexole or opioids myself, but I've heard from others in similar forums that finding the right treatment can take time.