RLS remission - why?

[Hoskme]

RLS started for me in late December, 2016. First manifestation was asymptomatic spasms (kicking) of my left lower leg when I was on a cruise, resting my back, which I had twisted a week or so before. A few days later, I woke in the middle of the night with severe and typical rls symptoms in the same leg. As a physician, though with little knowledge of rls, I had a suspicion that I had developed rls. I was away from home, but when I later visited my family doc, he prescribed a dopamine agonist. This gave me relief for a few months, but then things got much worse over the summer of 2017, now affecting both legs and resulting in very little sleep. My doc suggested augmentation, and switched me to gabapentin, which basically did not help, despite pushing up the dose. I also had periodic spasms of multiple muscle groups under the same circumstances as rls, which was when I lay down in the hopes of getting to sleep at night. My GP sent me to a neurologist, who started me on pregabalin, as well as clonazepam for the spasms, which he did not feel were related to rls (I think he was wrong about that, but certainly the clonazepam worked for me and at a very low dose). This helped quite quickly, though I required up to 300 mg of pregabalin in order to get good relief. By this time (September 2017) I made the decision to retire from my nuclear medicine practice. My last day of work was December 8, 2017.

Here is the strange part. Within 3 weeks of retiring, symptoms of rls decreased. I slowly reduced my nightly dose of pregabalin, eventually stopping completely. The spasms also went away, and I stopped the clonazepam as well. Since January 2018, rls is in complete remission. I’m not taking any meds except thyroxin (20 years) and Nardil (10 years).

Could this remission have something to do with reduced stress related to my retirement? I certainly noticed a lifting of low-level stress that I had hardly noticed while I was working - the constant knowledge that a moment’s inattention in my work could really hurt somebody, or conversely, if I was constantly vigilant, I could really help somebody. I suspect that these feelings are not unique to health care providers, but I’m sure that any of you who work in health care know what I mean.

So do any of you have personal experience or knowledge of similar remission of rls? This is certainly not what I expected: I expected the rls to get worse with age and did not have much hope of long term relief from meds, let alone long term remission. I’m 68 yrs old now.

[stjohnh]

Welcome to the RLS forum community Dr. Hoskme ! You will find, or have already found, that the members of this board represent a considerable body of knowledge, experience and compassion.

RLS is notoriously fickle. For reasons that are unclear, consistent responses to medications or other treatments just don't happen as frequently as with many other diseases. For instance, it is well known that even for a person with severe RLS, if they are involved in an activity requiring intense concentration, RLS symptoms frequently won't appear. There are a few medicines that are fairly reliable in their ability to help RLS symptoms, but for even the most reliable treatments (DAs and opioids) there are people that just don't seem to respond. Lots of people have had the experience of seemingly stable response to medication, only to have spells of temporary improvement or exacerbation. Stress can cause symptoms to worsen, but not reliably so. Certainly there are cases of spontaneous remission, though I don't know if the remissions are durable. You are very lucky. Keep your iron up (ferritin>75 if possible) as RLS is caused by BID (Brain Iron Deficiency).

[Rustsmith]

Welcome the the board Hoskme.

My experience was exactly the opposite of yours. I had experienced mild symptoms of RLS for many years, but it was usually limited to when I was on long airline flights, which was a very frequent occurance with my job. My job involved a lot of stress as a technical executive with a major multinational corporation. My RLS went from mild to severe about four months after I retired. My theory is that it had to do with chronic jet lag. I was on an international airline flight about 2 weekends per month for about 10 years. It got so routine for me that a six hour time change to me would be like daylight savings to you and I was even coping with 12 hr changes in just a day or two. I think that all these continual changes to my circadian rhythm was suppressing my RLS as it grew worse and that the chance to finally acclimatize to a single time zone finally allowed my RLS to show its head.

[badnights]

Could this remission have something to do with reduced stress related to my retirement? I certainly noticed a lifting of low-level stress that I had hardly noticed while I was working - the constant knowledge that a moment’s inattention in my work could really hurt somebody, or conversely, if I was constantly vigilant, I could really help somebody. I suspect that these feelings are not unique to health care providers, but I’m sure that any of you who work in health care know what I mean.

So do any of you have personal experience or knowledge of similar remission of rls? This is certainly not what I expected: I expected the rls to get worse with age and did not have much hope of long term relief from meds, let alone long term remission. I’m 68 yrs old now.

Absolutely it could do with lessened stress! I haven't experienced retirement yet, but smaller-scale reductions in stress have reduced the severity of my symptoms. Not eliminated them, ever, though

Also, perhaps, your back issues triggered the RLS/WED somehow (despite there being nothing in the literature except anecdotes to suggest that this can happen), then augmentation masked the healing or whatever removed the trigger, and then withdrawal from the dopamine agonist allowed you to finally experience your base level of RLS/WED, which was at your old pre-back problem level.

I came across a couple of studies a few years ago which both showed a fairly high rate of remission in individuals, not at all what I expected from reading the standard descriptions of the course of the disease.

[Hoskme]

Thanks for your replies, everybody. I certainly feel fortunate in having this remission, and hope it lasts! I was not thinking that the rls had any association with the back pain - The back issue was just an ordinary strain caused by twisting and bending at the same time. It resolved over a couple of weeks. I can’t help but think that the rls remission had to do with the end of that chronic low-grade stress of doing high-end medical work. I wouldn’t have called my job particularly stressful, even in retrospect. It is interesting to hear about Steve’s experience of just the opposite response to what seems a higher level of stress. RLS seems like a very strange disease. I wish you all improvement, remission, and generally good things.

Mike Hoskinson

[Frunobulax]

RLS is notoriously fickle. For reasons that are unclear, consistent responses to medications or other treatments just don't happen as frequently as with many other diseases.

Exactly. However, there may be some changes that trigger a response related to the OPs retirement:

• Changes in the environment? Maybe you're no longer exposed to certain chemicals, possibly detergents or impregnating agents used in the work building?
• Changes in the diet or in the digestion? RLS is tied to deficiencies in iron and vitamin B12, among other things. Higher stomach acid or different mix of food might make a difference. (Did you take any heartburn medication that may no longer be necessary?)
• Different posture or less movements of the head? There are theories that cervical traumas can permanently hamper the vitamin and mineral levels in the brain, which can be augmented by head movements. If you had a concussion or some other damage to your spine at some point in your life, it's possible that certain head movements can lead to various symptoms. Less head movements, or avoiding certain movements, may lead to a better supply of the brain with the various nutritients it requires. Your back pain rings a bell here.

It might be something completely different though. Watch your iron and vitamin b12 levels, make sure they're well up, and hopefully you won't have to deal with RLS anymore.

[Hoskme]

Thanks for that advice. I haven’t had ferritin checked since the first visit to my GP for RLS. It was within the normal range, but I forget exactly what it was. No history of cervical trauma or head injury, although I did knock my head hard enough to break my bike helmet about 10 years ago (fractured clavicle too). Change in environment, yes. I moved to Vancouver Island from Alberta after retirement, but the improvement happened while I was still in Alberta getting the condo ready to sell and moving out. Heartburn has never been a consistent issue. I take nothing but Gaviscon, and only rarely have any heartburn. No change in that regard since I stopped work. Truly, the stress hypothesis is seems the most likely to me, because the only thing that really changed was the end of life-and death responsibility from my job. I was good at it, and when I retired I had accolades from the most unlikely sources for the quality of my work over the years. So I retired at the peak of my career, not realizing until a few weeks later that stress was a constant companion. “You don’t know what you’ve got ‘till it’s gone”, to quote Joni Mitchell. I’ll make an appointment tment for next week and get that ferritin checked.

[badnights]

not realizing until a few weeks later that stress was a constant companion. “You don’t know what you’ve got ‘till it’s gone”, to quote Joni Mitchell.

yes, stress is huge. (and even knowing that, I still can't manage to reduce it much in my own life. How perverse we can be.)