Employment

[pghterp]

I have had RLS for about 10 years and the condition is getting worse. Fortunately, I am at a job where I have the freedom to move as often as I need to relieve symptoms. Now my employer wants to move me to a position where I answer phones all day using a headset and a computer. He thinks me using a headset constitues movement so problem solved. I tried to explain that standing in place is not the same as walking, but he doesn't understand. I don't know anyone that has RLS and I'm sure he doesn't either. If I had something more severe like Parkinsons or MS I don't think I would be having this problem. I use Ropinerole but the drowsiness it causes makes it difficult to function. Has anyone had this problem with an employer? Any suggestions?

Thank you.

[ViewsAskew]

I have had RLS for about 10 years and the condition is getting worse. Fortunately, I am at a job where I have the freedom to move as often as I need to relieve symptoms. Now my employer wants to move me to a position where I answer phones all day using a headset and a computer. He thinks me using a headset constitues movement so problem solved. I tried to explain that standing in place is not the same as walking, but he doesn't understand. I don't know anyone that has RLS and I'm sure he doesn't either. If I had something more severe like Parkinsons or MS I don't think I would be having this problem. I use Ropinerole but the drowsiness it causes makes it difficult to function. Has anyone had this problem with an employer? Any suggestions?

Thank you.

Welcome to our discussion board. Unfortunately, many of us have had these issues.

Do you think your doctor would be willing to write something that says you need to be able to walk freely, not just stand? If you cannot do the job while walking, it's not a good match. Do you know why he wants to move you? Is your current position being eliminated?

Also, I'm a bit concerned that you have daytime symptoms with the ropinerole. Here are few questions for you - please don't feel like I'm interrogating...I really do have a reason for asking.

How long have you taken it?

How much do you take?

When/how many times a day do you take it?

Has dose increased since you started? if so, how much?

Have your symptoms increased since you started taking it? If so, how much?

Have you had a serum ferritin test? if so, what was the result (the actual number, if you know)?

Thanks for humoring me

[Polar Bear]

The questions of Viewsaskew above are very meaningful

I had difficulty in my work at a desk, it was a nightmare. My boss sorted out a lowish table to sit upon the desk giving a raised work surface for my keyboard etc. to allow me to stand as I went about my work. it was rather rudimentary but did the job and I was not in public view. I agree that standing is not as good as walking, though it is better than sitting, and agree that perhaps a letter from your doctor may help. Even if your boss does not understand the symptoms, there will be a doctor's letter to confirm that your condition requires acknowledgement and compromise.

[badnights]

Hey peggy4, I hope you find time to get back to us.

Ann's questions are to help determine if you're augmenting on the ropinirole. It is notorious for initially helping, but over time causing the symptoms to start earlier in the day, increase in intensity, and spread to arms and other body parts. Doctors keep upping the dose, being unfamiliar with augmentation, which does not happen in many (any?) other diseases, and this just escalates the problem.

Employers, depending on who they are, understand to a greater or lesser degree. You're right, if it was a name they recognized and had tagged as "serious", you wouldn't be having this problem. When you speak of your disease, call it a movement disorder, and use the Willis-Ekbom name, not RLS. The note from your doctor should use the same terminology, if the disease is specified at all; or the note could use the term sensori-motor or neurological. (I have come across people who think neurological means psychiatric, though, so I don't use that term anymore.) The note also must say you need the freedom to stand and walk as necessary in order to function effectively.

I suspect most people with severe RLS/WED who need to walk during the day are augmenting on a dopamine agonist, though some have genuinely severe W-E disease.

[pghterp]

I did get a note from my doctor but my employer is still considering modifying moving me to a job where I'll me forced to sit all day. From what I've read, it looks like augmentation has set in. I want to thank all of you that responded and offered advice and support. I don't know anyone with this problem and I get the impression that people think this is a made up disease. It helps to know you're out there.

[Polar Bear]

I hope that your employer finds some compassion and makes the proper decision.
Does your employer have an occupational health officer, or what about a human resource officer.
Is there any route for pleading a case for what is a medical health matter, clearly there are many who have yet to be educated.

What about using this publication of the Foundation to explain the gravity and the difficulties that need recognised.
http://www.willis-ekbom.org/document.doc?id=2323
On page 9 it refers to a raised desk.
At the start of the document it explains the symptoms.

[EeFall]

When I started my current job a couple of years ago they almost immediately started putting all of our names in a rotation pool for second shift. I immediately got a note from my sleep doctor and gave it to my HR person and my manager. It basically said I should not work another shift under any circumstances because of my severe RLS. I would think that you could get a note similar to that for your situation.

[ViewsAskew]

Legally, you can get an accomodation - this is what EeFall received. In the US, employers must follow ADA rules - I do not think any companies have an exemption from it, but I am not sure. That said, employers can lie and say things that make it almost impossible for you to sue.

This is from the EEOC site, http://www.eeoc.gov/facts/ada17.html :

"Reasonable accommodation is any change or adjustment to a job or work environment that permits a qualified applicant or employee with a disability to participate in the job application process, to perform the essential functions of a job, or to enjoy benefits and privileges of employment equal to those enjoyed by employees without disabilities. For example, reasonable accommodation may include:

acquiring or modifying equipment or devices,
job restructuring,
part-time or modified work schedules,
reassignment to a vacant position,
adjusting or modifying examinations, training materials or policies,
providing readers and interpreters, and
making the workplace readily accessible to and usable by people with disabilities.

Reasonable accommodation also must be made to enable an individual with a disability to participate in the application process, and to enjoy benefits and privileges of employment equal to those available to other employees.

It is a violation of the ADA to fail to provide reasonable accommodation to the known physical or mental limitations of a qualified individual with a disability, unless to do so would impose an undue hardship on the operation of your business. Undue hardship means that the accommodation would require significant difficulty or expense."

If you are augmenting, I hope you have a way to stop it. It surely can be miserable.

[EeFall]

Legally, you can get an accomodation - this is what EeFall received.

Exactly, that is what it was and it saved me a lot of grief.