Previously I was a high level public servant though my RLS combined with stress resulted me in leaving two jobs. I have decided that I am unable to return to 9 to 5 employment as whilst my condition is now well controlled with Buprenorphine I still get breakthrough at various times of the day that is disruptive to normal employment. I have set up a website (thefarmerslot.com.au) currently targeting Australia but I do own the same Domain in US and UK.
Has RLS impacted your employment? What strategies (if any) have you used or types of jobs have you found that allows you to continue. All I can think of is self employment, but it is a bit isolating so was wondering what other options there may be?
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ChickenTwisty
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Whichever way you look at it, RLS is a disability and therefore in Australia:
The Disability Discrimination Act 1992 requires employers to make reasonable adjustments so a person with a disability is able to perform the inherent requirements of the job, unless this would cause 'unjustifiable hardship'.
The public sector, being what it is, is even more accountable to employees with disability.
Do you have any desire to return to the public sector? If so, you could get a lower level position which may bring less stress. Alternatively you could work part-time.
You could also negotiate more working from home hours if this helps you manage your condition better. And you could work at a standing desk.
Otherwise, a job that involves standing or walking is probably a good starting point.
You say that buprenorphine controls your symptoms well but that you get breakthrough symptoms that make it impossible to work 9 - 5. That doesn't sound well controlled to me.
Pubic sector wasn't having a bar of working around my RLS and after a drawn out dispute I left with a settlement, this was stress! I loved the work, operated at a very high level (key positions on muli-billion dollar programs, was kicking goals but as soon as I asked for accomodations I was poision and things spiraled from there and the CEO wanted me out.
I need high level or at the very minimum highly vairable work because I become bored very easy.
By well controlled I mean it is not 24/7 though it is still at least 3 or 4 days a week and on those days can be two or three episodes of various lengths, and it can be any time of day now (though mostly evening if I have a good sleeping pattern). So I do consider it pretty good but would like to up my dose.
Given my experience and having management go from singing my praises (literaly) to forcing me out I wouldn't put myself in that position again. I feel at this point it is to often that I wouldn't be able to hide it.
Hi Chicken Twisty. Here’s the past 12 months of my story.
My RLS and PLMD started shortly after changing career from health care to being a self employed Handyman - property & garden maintenance. Due to the variety of the work, RLS rarely affected me until I stopped to rest/drive longer distances/do admin and in the case of PLMD, sleep. In the past 12 months I changed medication and am now on Pregabalin. This keeps my RLS well controlled. It doesn’t help the PLMD though.
Due to other health issues, I am trying to change career again. My main concern is that since reaching an effective dose of Pregabalin, I have gone from being someone who was up with the lark -5:30/6:00 am cracking on with the day to struggling to wake up. I sleep very poorly 3-4 nights out of 7 and either get up for a couple of hours or lie in bed suffering. I’ve changed my work start times to 9:30am but struggle to make that each day. I can easily sleep through to 12 noon if I allowed my self. If I’m not out and doing practical jobs and I’m at home doing admin or on days off, I often take 40min naps, sometimes morning and afternoon! It takes me a good 30 mins to feel properly awake in the mornings. Some times, I’ve had such a bad string of nights that I have to cancel my day and go back to bed.
I have been offered and am awaiting a start date for a job back in health care. It would mean 6:30am wake up and commute to start at 9am. I am seriously worried about my ability to make it each day. No employer is going to accommodate lateness or unreliability. Day time naps will be out of the question of course. Really don’t know what to do. Do I ‘fess up and pull out of the job? Do I stick with a job that is difficult due to my other health problems? What else would I do? Too young to retire. Need to pay the bills and live.
Such a dilemma! I would say see what they are like (unless it is same people b4 then you might already know), but then I was blown away by the sudden switch (maybe i was just a poor judge of character). You would like to think in health they would be more understanding, but you don't have to be in this forum to know being in health, a Dr even doesn't mean you know about RLS. For me as I said I wouldn't want to say anything, but that shouldn't be the default position, but as a supervisor I had been asked to manage people out who had health issues (i didnt).
Hi. Pregabalin is supposed to help with RLS and PLMD but it doesn’t seem to help the PLMD in my case, no. Everybody responds differently to meds so that’s just me.
It might make you sleepy, it's a possible side effect. Tell your doctor or pharmacist if you notice any of the following less serious side effect and they worry you: dizziness, feeling tired or drowsy, constipation, diarrhoea, nausea, headache, increase in weight, unsteadiness when walking, reduced coordination, shaking or tremors, dry mouth or blurred or double vision.
Tell your doctor as soon as possible if you notice any of the following more serious side effects: unusual changes in mood or behaviour, signs of new or increased irritability or agitation, signs of depression, confusion, swelling of the hands, ankles or feet, enlargement of breasts, unexplained muscle pain, tenderness and weakness, passing little to no urine, trouble breathing, shallow breaths.
It's the official warning from the regulator in Australia. Only a small minority are going to experience any of them, but it's amazing how often we aren't warned of the possibility.
It is outrageous that RLS is not a specific disability listed in Equality legislation worldwide.I also have MS and was pensioned off aged 34 as I wasn't able to walk for around 15 months after my first major attack. I was devastated at the time, but realise I couldn't have continued working in my high pressure, demanding job. MS is listed as a disability in the UK Equality Act. Obviously RLS isn't mentioned because it's not even taught on the medical curriculum.
Untreated, severe RLS is a lot more debilitating than my highly aggressive RRMS, but in the UK, RLS is treated by medics as a minor inconvenience. Trying to get PIP or DLA payments for RLS requires medical back up reports. That just doesn't happen.
RLS is treated with as much disdain as ME/CFS or Long Covid.
Even if RLS did qualify for PIP or DLA, the rates are very low and would not maintain your previous standard of living.
Under UK legislation, employers have to make 'reasonable adjustments' for disabled employees, but as most UK doctors do not recognise RLS as 'disabling', they are unlikely to support the patients' applications.
We have a long, uphill battle to get RLS taught fully, research undertaken and RLS recognised as a disability.
Couldn't agree more, but always surprised but also strangely validated when you compare to your other conditions. Very similar here with accessing income protection insurance, TPD insurance (TPD if opiods were easier to access for the majority would be understandable), or welfare sicknesses benefits. Though I do feel in the last two years there is more awareness of impact and maybe things are different now ... but maybe that is just my perception because I've become aware of a few medical professionals who do recognise it. Do you feel any different these days/have you tried recently?
My RLS is completely controlled 24/7 by Buprenorphine.And nothing has changed in the UK. Neurologists are still prescribing dopamine agonists and refusing iron infusions /opioids.
I've always suspected symptoms somewhat move with sleeping patterns (or lack there of) and that it is somewhat self perpetuating given the impact rls has on sleep, but haven't even monitored myself enough to say with conviction. When I left work as described above I would regularly work 12 to 15 hours because of the distraction effect. I hope it remains effective 4u.
as a writer and publisher, I am now self-employed. I simply can’t imagine if I had someone telling me what I couldn’t couldn’t do at work. Some days I’m so exhausted and I have to sleep in the afternoon. Some days I can’t sit down. I’m very grateful that I can support myself at home and do what I need to do when I need to do it.
I love that! I believe it is something that is hard to be successful at, you must be very talented. The self employment aspect of working when you can is common. Not a lot of people interaction I imagine, I don't know why but your post made me think maybe consulting is the sweet spot in looking for. There is lot of control over when most of the work gets done, intellectual stimulation, opportunity for variety and a bit of people interaction.
consulting is where I started. This was around the time I was falling asleep in my car at stoplights as a single mom. I didn’t have anybody telling me that I was thrashing around all night. It was right at the beginning of my diagnosis. Good luck in making any changes you need to make. sometimes we just need to be in a position where we can take a nap and catch up from what we didn’t get the night before!
I have shied away from entering employment in favour of remaining self employed specifically so that I can accommodate the difficulties presented by my rls and the treatment drugs. In my circumstances this means that I earn less than I could but I just cannot face the stress of having to conduct negotiations with an employer, based on such an invisible and widely misunderstood disability as rls, to achieve the level of flexibility I require. I regularly work through the weekends because the amount of work I can do in a day is often much less than in my pre-rls days. Rls has forced me to re-evaluate many aspects of my life. Not all of it is bad though; some useful perspective is gained.
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