What’s the end game?

[Bridgercan]

I’m 60 years old and have had RLS for 25 years. It has gotten steadily worse over the last ten years. In those ten years, I’ve slogged through the whole RLS nightmare: multiple augmentations, indifferent/incompetent doctors, infuriating battles with health insurance companies, most of the drugs prescribed for RLS, including dopamine agonists, alpha 2ð ligands, gamut of opioids and multiple combinations of all of the above. I’ve been seen by neuros and/or sleep specialists at Scripps, Houston Methodist, Mayo, and quite a few incompetents in between. About half the time, management of my symptoms has been okay, not good but good enough. When it’s not, I’ve had stretches of physical, mental, emotional, work, and marriage distress and misery. Altogether, I believe it not a totally out of the ordinary experience of someone with severe RLS.

My spouse and I moved abroad last fall. The accumulating impacts of RLS were making my work untenable. I decided to retire while I had enough energy to make the move across the pond. It was on our bucket list to live overseas, to learn a new culture, cuisine, and language. Before we made the leap, we found a well-regarded RLS specialist who knows professionally two of the specialists I used to see in the states. Together we formed a transition plan for med management.

The move itself went about as good as a move across the pond can go; the stressors were no worse than expected. But the sum total of stressors of new country, new language, camped out for months in our house waiting for our very delayed furniture, both hot water and heating failing at the same time, unanticipated expenses…well, you get the picture. Nothing unsolvable or extreme in of itself, but cumulatively, a lot of stress for both of us,

So it’s been many, many weeks of med-resistant RLS and the resultant little to no sleep—an all nighter occurs once or twice a week. Suddenly going out to movies, plays, concerts cause me anxiety; anything over two hours in a car, train, or plane is simply a nonstarter. These are new anxieties and fears.

My faith is sorely tested, and some nights I want only to fall asleep and never wake again. I miss people and aspects of myself in those long, lonely nights of pacing: far away family and friends, my career, my imagination and creativity, my spark and zest for life, my passion (and sex) with my spouse, my ability to feel gratitude for the blessings I still do have. I’m left in very despairing state when I can’t find a place of gratitude to hang on to at 3, 4, or 5 in the morning; these are the desperate hours when all looks bleak.

I believe my doctor and I will arrive at better symptom management. But in the meantime, severe sleep deprivation is doing its damage. My short term memory is a little more than a sieve; that makes learning a new language even more difficult. The stress on my marriage is bad, really bad. I’ve begun to fear what the future holds.

My questions are directed to those who are >70 years old and have severe RLS: how does RLS affect you along with other health issues and complications? How do you cope? Or, has anyone witnessed their elderly parents deal with RLS on top of everything else related to aging? While I know RLS in and of itself won’t kill me, I’m beginning to wonder if it will ultimately be the cause of my demise.

[Rustsmith]

Bridercam, I am 72 yrs old with severe RLS (IRLSSG score of 31 or 32). I can sympathize with the problems with your move. Before I retired, I did a great deal of international travel, so I understand the issues with an international relocation.

I moved from Houston (I was also a patient at Methodist) to Colorado so that my wife could get away from the heat (she has MS which is made worse by heat). I assumed that I would be able to find a doctor in Colorado (both a GP and a neurologist who understood RLS). WRONG! I found that the town where we had moved had had an opioid pill mill several years before we arrived. As a result, every GP I tried flat refused to prescribe opioids, even if directed by a neurologist. I was able to found a neurologist in the state capital (2 hrs drive away) who understands RLS. She snail mailed prescriptions to me for a while (each month), but then the local pharmacy that I used refused her prescription, even though it was printed on hospital stationary with watermarks. They said that it was because she wasn't a local doctor and they couldn't reach her on the phone (she only sees patients one afternoon/week). After much work, I finally found a local GP who would work with me and write my monthly scripts. Then disaster hit when I had to go to the ER one night to try to reach one of my doctors (I followed her after hours instructions). The ER doc decided that because I was depressed due to sleep deprivation, that I must be suicidal, so he had me locked up in a mental health facility for a week over Christmas. When I got home, I told my wife that I could no longer live in that town, so we found a new place to live in the next town north (30 miles away). We were starting to move when Covid hit. So, we ended up camping out in our new apartment on air mattresses for five months with almost daily trips back to our old place to load up the car with as much stuff as I could pack in. We finally got settled about six months after the initial move.

During all this, I continued with my neurologist and after the move, I was able to find a GP who understood my needs and worked with me. That is, until she retired. Then it took me one year to find a new GP. Thankfully, I was able to find a nurse practitioner to write me prescriptions in the interim.

As for my RLS, I would occasionally take all night walks at the old place (we lived right next to a park). Since that time, my neurologist has increased my methadone dose from 5 to 7.5mg and my RLS is now controlled most of the time.

About 2 yrs ago, I developed REM Sleep Behavior Disorder (RBD), which can only be treated with clonazapam. RBD made me a danger to myself and to my wife while I am asleep, to taking clonazapam was my only choice. Fortunately, it seems to be working well and may also be helping with my RLS.

My only major issue now is that the week that the ER doc had me incarcerated in the mental health facility left me with PTSD, which is worse during the Christmas time period. I have developed ways to manage it, but I occasionally become suicidal due to the flashbacks to what was done to me that week. Last month wasn't as bad as it has been thanks to support from my wife and doubling the dose of CBD that I use to fight the depression that they caused me to develop.

So, live goes on and I wait to see what challenge I will be presented with next. RBD is often a precursor to either Parkinsons or Lewy Body Dementia (two aspects of the same disease). Hopefully, one of them will not arise until about 10 yrs from now.

[Polar Bear]

Bridgercan and Rustsmith, thank you both for your very moving posts.

[Bridgercan]

Thank you Rustsmith for taking the time to share. Reading your post I felt very sad and empathetic for you. I get the impression you fight on through each setback, and you seem to have your wife’s support. I’m very lucky to have my spouse’s, even though, as you likely know, our conditions are at times very, very difficult for them.

In that regard, sometimes it would seem easier to struggle through on my own. It really pains me to see my hell reflected in my spouse’s face—worry and pain writ large. Other times, I resent being pushed to do something, anything, for myself when I only want to curl up in a ball. On the other hand, life on my own would be a poorer one in countless ways, and I would likely be in worse shape. He is an amazing advocate and fights for me when I’m too exhausted to. Things to remember in the long hours of very trying nights! So thank you again!

[Rustsmith]

Bridgercan, my wife has had MS since before we were married 51 yrs ago. I have been her caregiver for all that time. At times in the past, she has been bed ridden and at others fairly active. We were both scuba divers (in spite of her MS) and have been around the world doing that. So, she doesn't mind becoming my caregiver now. In fact, the first time that she had to take me to a neurologist appointment for my RLS, she was rather pleased that she got to be in my role for a change.

These days, we mainly spend our time taking care of each other and recognizing the challenges that we both face.

[Bridgercan]

Congratulations on 51 years together!! That is amazing and wonderful! Inspiring too. But it’s your last sentence that inspires and moves me the most, about taking care of each other and recognizing each other’s challenges. That strikes me as real devotion to one another whatever the circumstances; to see and be seen as each of you truly are. Often it’s really hard work, and not always achieved, but I believe that’s what it takes for a marriage to thrive and go the distance.

[debbluebird]

I'm 73, female. I've had RLS since 1990. So, 33 years. Mine has been severe for about 17 years day and night. I have short term memory loss due to sleep deprivation. I had to retire at age 60 because of that. I'm an RN. I've tried about 20+ meds. The DA worked for about 8 years with occasional RLS, then I augmented. Of course my doctor didn't know about it and at the time, neither did I. My next relief came with Methadone and gabapentin, again with occasional RLS.
Then because of moving again to another state, I could no longer get the methadone. I now take buprenorphine film 2 mg and gabapentin 1800 mg every day.
Since switching to the buprenorphine last year I've only had a few nights of RLS last Aug and Sept.
I haven't had any since September. It is amazing to me.
My sex life was messed up because of the meds and that's been since the DA. No organisms since the buprenorphine. Just difficult before.
I hope this helps.

[jul2873]

Hi Bridgercan,

I've had episodes of RLS for at least 40 years. I'm a female, and 80 next month. While I have vivid memories of not being able to sit on a couch and chat with friends at parties, and having a very hard time on airplanes, on the whole I was sleeping pretty well until about 13 years ago. Then I was having to get up 3 or 4 times a night and walking a little. About this time me moved, and I decided I should talk to a doctor about this. Also, I discovered this forum then, and read it all the time.

The first neurologist I saw, who said he specialized in RLS, tried to put me on a couple of DA's. But by then I was reading this forum, and was afraid of augmentation, so I never took them. Instead, I did research online, and found kratom. I started taking it, just a little, and it was enough to give me pretty good sleeping. Since then, I have had a number of doctors for various things, and as soon as they hear RLS, they try again to get me on a DA. I refuse, since the kratom is still working pretty well. After all these years, I take more--about a tablespoon 3 or 4 times during the night, and a tsp. 2 or 3 times during the day. I also take a lot of vitamins.

This gives me a pretty good quality of life. I get a total of 6 or 7 hours sleep at night. It's patched together, since I get up about 3 times. I'm up for between a half hour and hour. I take some kratom and walk around listening to podcasts and audio books. Since I'm retired, going to bed early and sleeping in is not a problem.

Essentially, my RLS has been pretty stable for ten years. I'm wondering if that's because I was lucky enough to read this forum before taking a DA. Of course, every so often I get stuck somewhere and the kratom isn't enough, but for the last couple of years my PC has given me a bottle of Oxycodone to use for these times. So on long plane or car rides, for shows at night--these tough times--I take a couple of pills and because I use them so rarely they work well.

My heart really goes out to those of you who are really so disabled by this disease. I feel very lucky, and very thankful for the people, like Anne and Steve, who have posted for so long on it.