Is anyone else pretty debilitated by RLS?

[stockton2malone2]

Just curious to see how rough other people's cases are. Even with top line treatment from Dr. B I still struggle a lot and am nowhere near the person I used to be. Even if I manage 10 hours of sleep I'm still exhausted, and on a good day I have maybe 5 or 6 hours of activity in me before I need to sit or lay down and take it easy. I never really know how I'll feel from one day to the next and I haven't been able to work consistently for a couple years.

I'm constantly trying to strike a better balance between enough meds to be able to get to sleep and depression/grogginess from meds, but it seems like no matter how much I fine tune it the bed is always calling my name.

If amputating my legs would solve this it would be one of the easiest decisions I've ever made, and if I had to live without my meds I would find the nearest cliff and hurl myself off it.

I'm really not interested in treatment suggestions for this thread. I've tried the diets and devices and the iron and ALL the meds. Unfortunately it seems like this just may be as good as it gets for me, at least until the medical science makes another leap or two.

To everyone else who has to endure this at whatever level, you are incredibly strong and I'm sorry that way too often the world doesn't see that.

[stjohnh]

Well, I continue to suffer considerably, even though I am MUCH better with IV iron as my main RLS treatment. Basically, I have to take medicine to sleep, awake slightly less tired than when I went to sleep. I am ok (NOT "good") from 6am to about noon and then deteriorate steadily until I go to sleep again. By deteriorate, I mean I get progressively more tired, grouchy, and increasing mental fog. Now don't get me wrong, this is still MUCH better than I was before starting the IV iron 3 years ago. I used to be physically and mentally much more active. Now I kind of put off anything that I just don't absolutely need to do today. I watch way to much TV and even though I used to read a lot (average 2-6 books a month) I now don't read much that isn't on line. I attribute my personality changes primarily to damage to my dopamine receptors from the augmentation I suffered while on pramipexole.

My situation however is complicated by a fairly severe case of covid I suffered through about 18 months ago, with residual long-covid symptoms, so some of my symptoms are a result of that. My opinion is that Covid-19 should be renamed to BEV-19 (Brain Eating Virus).

Anyway, my life completely changed when my RLS went from mild to moderate/severe/augmented, and not in a good way. I'm not really complaining, I am happy to be alive, don't think I am depressed, love playing with my 6 and 7yo grandkids, etc. I am well aware that many other folks suffer much more than I do. I thank Jesus every day for the love puts in my life.

One thing you need to be aware of, asking a question like this here: People who are doing well don't usually post on this and similar medical forums. People doing well on their current meds, either stop posting, or never find a forum like this in the first place. So the responses you get are likely to be people with more severe than average RLS or who aren't treated properly (LOTS of docs "treat" RLS patients even though they know almost nothing about the disease).

[Polar Bear]

I believe there is always hope but there was a time this wasn't so.
My rls began nearly 40 years ago and I was in despair for many years. The symptoms were practically 24/7. My work was office based and I spent a lot of time at my desk. By morning tea break at 10.30am when we'd all get together for 15 minutes I'd be spending tea break sitting jigging my legs and then up doing stretches. It sounds like augmentation but this was before I started taking any medication.
Then while in the USA on holiday I saw an advert for Ropinerole. Returning to the UK I asked for this off my doctor, started on it, and gradually it was increased. Neither the doctor nor I knew anything much about Ropinerole. It didn't do much to help.

Life improved when Codeine was added, Then Pregabalin was prescribed for my peripheral neuropathy and by fortune this also helped rls.
When I say life improved..... it was just better than it used to be. It was still pretty awful at times and sleep was horrendous. I still struggled.
I asked for a sleep test which showed I had sleep apnea and a mask was prescribed, this helped my sleep somewhat. My broken sleep was likely because of rls, insomnia and sleep apnea. With the help of the mask I was able to sleep for a bit longer at a time once I did get to sleep.
The 'biggie' was when I tapered off the Ropinerole and then more recently came off my antidepressant which is often a rls trigger. My fingers are crossed that I can stay off the antidepressant.

I know you aren't interested in treatments but it was the change in my treatment that gives me hope for others. As recently as 3 years ago I'd have had little hope having suffered for so many years and every special event was a struggle with little chance of enjoyment.

You say that without your meds you'd be off the nearest cliff. I'm with you on that and have said it many times to my husband. I am terrified of ever being ill and vulnerable and at the mercy of others with regard to any meds.
My meds are my lifeline and I understand absolutely your feelings on this.

[Rustsmith]

Here are some of my lowlights of my time since my RLS went from mild to severe.

My first neurologist didn't have any idea why I couldn't sleep and was having to walk around the house each night. She let me suffer for over four years before I gave up and sent myself for a sleep study. My symptoms were so obvious that the PA at the sleep study diagnosed me before she even started reviewing my answers to the RLS questionnaire. That first year on pramipexole was wonderful, until I augmented for the first time.

Two years ago I was having problems with RLS breakthrough. I had been through a number of near sleepless nights and at 8PM I realized that it was going to be one of those really bad nights when I would get zero sleep and be on my feet all night. The weather that night was 23F and a steady 30mph wind out of the north, so walking outside was out of the question. So I followed my doctor's after hours instructions to go to the ER and ask them to call my doc. The ER doc decided not to follow hospital procedure and didn't call my doc. Further, he decided that my pacing around the exam room must be due to severe agitation. He also saw that I was on opioids, so he decided that I had to be suicidal (which I denied) and so he committed me to a psychiatric hospital and chose one that was 3 hrs away. The hospital withheld two of the meds that I had been prescribed for my RLS (probably due to cost), did nothing when I went through withdrawal from one of the meds on Christmas Eve and then did nothing to treat my so called risk of suicide. After a week of collecting my insurance money, they dumped me on the streets on the afternoon of New Year's Eve and expected me to find my own way home.

Ever since I augmented the second time around, I have been on opioids. I was first put on methadone and about a year later I developed severe depression (I was at the point of suicidal ideation). My doctor switched me to tramadol ER, which resolved the depression but came with its own set of side effects. So she switched me back to methadone after another six months and we agreed to switch back and forth every six months in order to manage the unacceptable side effects of each drug. I have been on methadone now since last June and was starting to become very depressed, but decided that I needed to do something else this time. During all of this, my sleep was horrible. I had to spend 10-12 hrs each day in bed trying to get rest because my sleep was so broken (two sleep studies confirmed this). After a bit of research on my own, I realized that I had all the symptoms of low testosterone, which is something that can occur with chronic methadone use but it was something that none of my doctors had checked. Blood tests found that my free testosterone levels were very low. I started testosterone supplementation and feel that my life turned around in just two days. I went from approaching the level of depression that is near that of suicide to being able to feel happiness for the first time in years. My energy levels, my motivation to get back into life and my libido all turned around in just two days. The taste of food and my appetite have also improved. And best of all, my sleep quality has improved to the point where I feel fully rested now with just 8 hrs of sleep. It is supposed to take about 3 weeks to reach full effect (it has been 10 days now), so I am excited to see what other parts of my body start to work like they used to. And none of this would have been necessary if not for the RLS.

[stockton2malone2]

Rustsmith, I went through the same thing with testosterone very recently likely related to methadone and Buprenorphine use. As a man in my 30s I had hot flashes for over a year and just assumed that was the cost of taking opiods, but eventually mentioned it to my GP who found my test and free test was low. Strangely though, I have responded very differently to the testosterone injections than others do. They somehow make me significantly more depressed and way more exhausted. They also give me incredibly vivid dreams and often times horrible nightmares. I was really hopeful that fixing my test levels would be the last piece of the puzzle but it just doesn't want to cooperate with me. The only slightly reasonable explanation I can come up with is my body responds weirdly and is very sensitive to meds, like how opiods are alerting for me, gabapentin really messes with my head, etc etc. Im currently in the process of weaning off the shots after over 2 months of trying to make them work. It is a shame too because I liked not breaking into a sweat for no reason and my muscles actually repairing themselves after spasming out all night. Fingers crossed I can find a middle ground in dose and dose schedule during the weaning process that allows for the good without too much of the bad, but I just can't understand why I'd respond almost exactly the opposite of everyone else to the shots.

[Rustsmith]

Although the shots seem to be the preferred approach to treating low T, I know that there are also pills that can be taken to address the problem. So just as you can switch opioids to get around side effects, maybe switching low T therapy would provide you with more effective relief. One of the suppliers is the company that advertises mail-order mens' health medications on television.

And I totally understand what it is like to experience paradoxical effects of meds. Many, many years ago I found out that I am intolerant to decongestants. A single Sudafed turns me from Dr Jekyll to Mr Hyde. This explained why I had a horrible reaction to the RLS-friendly anti-depressant Wellbutrin. When I saw how similar the chemical structure of Wellbutrin is to Sudafed (and meth), I understood why just two pills left me with the same symptoms as dopamine agonist withdrawal.

[Oozz]

After a bit of research on my own, I realized that I had all the symptoms of low testosterone, which is something that can occur with chronic methadone use but it was something that none of my doctors had checked. Blood tests found that my free testosterone levels were very low. I started testosterone supplementation and feel that my life turned around in just two days. I went from approaching the level of depression that is near that of suicide to being able to feel happiness for the first time in years. My energy levels, my motivation to get back into life and my libido all turned around in just two days. The taste of food and my appetite have also improved. And best of all, my sleep quality has improved to the point where I feel fully rested now with just 8 hrs of sleep. It is supposed to take about 3 weeks to reach full effect (it has been 10 days now), so I am excited to see what other parts of my body start to work like they used to. And none of this would have been necessary if not for the RLS.

Has the testosterone effected your RLS? Testosterone has a bit impact on iron homeostasis and there is a link between hormonal changes - emphasis on changes - and RLS.

[Oozz]

After a bit of research on my own, I realized that I had all the symptoms of low testosterone, which is something that can occur with chronic methadone use but it was something that none of my doctors had checked. Blood tests found that my free testosterone levels were very low. I started testosterone supplementation and feel that my life turned around in just two days. I went from approaching the level of depression that is near that of suicide to being able to feel happiness for the first time in years. My energy levels, my motivation to get back into life and my libido all turned around in just two days. The taste of food and my appetite have also improved. And best of all, my sleep quality has improved to the point where I feel fully rested now with just 8 hrs of sleep. It is supposed to take about 3 weeks to reach full effect (it has been 10 days now), so I am excited to see what other parts of my body start to work like they used to. And none of this would have been necessary if not for the RLS.

Can I ask, what are you levels now? And, how much are uiu taking? Has the testosterone effected your RLS? Testosterone has a bit impact on iron homeostasis and there is a link between hormonal changes - emphasis on changes - and RLS. I’m only 35 and my levels are lower range of normal but I am have been looking into TRT. Just trying to improve my QOL.

[Rustsmith]

Has the testosterone effected your RLS?

Not that I can tell. I haven't really noticed any increase in my symptoms. However, I have noticed that my sleep is not as interrupted as it was before, so I am sleeping far more soundly and my time in bed is much more consistent than it was.

what are you levels now? And, how much are uiu taking?

My total testosterone levels were at the high end of normal before, my issue was free testosterone, which was very low. My issue appears to be that a hormone that binds to testosterone (SHBG) was on the very high end of normal and that didn't leave any free testosterone for the rest of my bodily functions. Now that my free level is up, my mood has improved from occasionally being near suicide to actually feeling happy most of the time (I had forgotten what that feels like), my mind is clearer and best of all, my wife likes the renewed me even better.

My total level is now well above the normal range, and my free level is in the low end of normal now. I am taking 90mg of testosterone cypionate that is self injected into my thigh every four days. The 1-inch long needle is normally totally painless, but I am still getting used to actually pushing the needle into my leg. I have to keep reminding myself that I won't feel anything, but ...

As for iron levels, I will find that out after the appointment with my GP next week. My ferritin has been high for a number of years (250-650), so it will be interesting to see where it is now.