Restless Legs Syndrome (RLS) Discussion Board

Does anyone know why FMLA could not be supported by an RLS diagnosis?

I just got diagnosed a week ago, after a big episode, aggravated by sleep deprivation. My psychiatrist gave me 2 weeks leave from work, which has helped mentally, but more so physically. In 3 months, I've had 2 debilitating episodes of RLS in my arms & a painful episode of muscle spasms this morning in response to an unrelated stressful event.

As I understand it, FMLA could be used with regards to going to work late (to sleep in after a night of insomnia), leaving early (to prevent muscle spasms from getting worse) & telecommuting (when symptoms are acute)

When I asked about FMLA, my neurologist informed should could not support my FMLA or Leave request "due to the nature of my symptoms".

Is there something I'm missing in this picture? Do I need specific wording?

If others have successfully gotten FMLA for RLS, please let me know!

So sorry this happened. Unfortunately I haven't used it. I do know a few people who've achieved SSI in the US, but only after at least one appeal.

I do have to wonder about the symptoms in your arms. Would you might sharing what you are taking? Symptoms in the arms aren't completely unheard of, of course. They are rare and often associated with specific medications.

It started with Akathesia. Literally wanting to jump out of bed every night. That resolved when I changed my meds, including dropping 50mg Benedryl each night
Then chronic insomnia. Falling asleep, then waking up every night. Sleeping very lightly. When I wake, I can only describe it as feeling icky in my arms.
I had a few twinges in my legs here & there
Then it became almost all in my arms. The first episode was after I took a single Artane pill. Horrible pins & needles. Muscle pain, weakness. It took 10 days to recover.
More insomnia, leading to sleep deprivation. A second episode of paresthesia, debilitating muscle spasm/fatigue in my arms.
I had a few nights where I could tell the feeling inside me was getting worse with rest, much worse at night. It's better in the morning, til about 11am.
The neurologist told me it was RLS...now I'm beginning to wonder
It is strange, it's 99% in my arms. It doesn't necessary get better with movement, unless I'm shaking my arms up in the air because of really bad pins & needles

At this point, I just want to know what I have so I can treat it & prevent it from happening again.

Here is a link to the consensus diagnostic criteria that was drawn up by the US and European experts:

http://irlssg.org/diagnostic-criteria

I can't say anything about FLMA, but I do have experience with Social Security Disability (my wife got it for MS). If you go that route, virtually no one gets approved the first time around. You could be a quadriplegic and they would turn you down (exaggeration, but not by much). Only about 50% of those who appear to the second level get approved but over 90% of those who appeal to level 3 (first hearing before a judge) get approved. You must have an attorney for level 3, but Social Security has to pay attorney fees if (when) you win. That is unless they pull the stunt they did with my wife and the judge sends it back to the level 2 reviewer with a message that I "strongly recommend you reconsider". We go stuck paying the lawyer, but she was approved.

Also, if you get SSDI, you automatically get Medicare 12 months later.

Thank you for the criteria!!

It's a huge eye-opener. That diagnosis is not me. I think my neurologist was wrong.

I so appreciate you posting that link

IT might still be useful to tell us what medications you're on - you eliminated Benadryl, which is a great trigger of WED/RLS symptoms. You took Artane - do you have Parkinson's? Some of the other Parkinson's meds are known to cause augmented WED/RLS in susceptible patients: levo--carbidopa is the worst, but the dopamine agonists do it too (pramipexole/Mirapex, ropinirole/Requip).

I am currently on a 6 week FMLA given to help me wean off Ropinirole. He prescribed cannabis to help with the symptoms of withdrawal. I definitely couldn't perform my duties stoned all day long so it wasn't hard for my neurologist to fill out the paperwork. I have thought about keeping it as intermittent FMLA to cover me on those horrible mornings that will hopefully become fewer and fewer without the DA. I will keep you posted!~

Thanks for the info. Todge. Maybe doctors are beginning to get the message about the horrors of WED/RLS. But marijuana for augmentation? I imagine it's not helping a whole lot?

So the cannabis didn't really help at all. I suffered through the first weekend and then after reading more posts from you all, messaged my doc to have him give me tramadol. I sent this huge email and referenced Mayo's own paper (I work and see a Neurologist at Mayo) and basically spent an hour trying to assure him that I wasn't drug seeking but I was truly desperate. He wrote back one sentence that said "This is no joke. I am ordering you Tramadol with one refill to start. Let me know if this isn't enough." I was astounded.

I have been taking 25 mg of Tramadol during the day and 50 at night. I still use the cannabis because it wasn't covered by insurance and I paid a fortune for it. AND of course there is the chance that maybe it IS helping at least a little. I am down to 1mg a night from 4mg. It has been pretty horrific but for me the Tramadol has been the only thing keeping me sane. Maybe the Cannabis will be enough once the Ropinirole is out of my system, but we will see!

Your experience with marijuana and tramadol is consistent with what most of us have been through. The only thing that is strong enough to cut through the symptoms of dopamine agonist withdrawal are the opioids. Gabapentin, Lyrica, marijuana, etc. can help under normal circumstances, but not when trying to get off of pramipexole, ropinerole or rotigatine.

As for the marijuana, after our own experimentation, many of us end up using a THC edible to help with sleep. MJ doesn't seem to do much for the movement side of RLS but THC is usually pretty good (i.e. better than sleep meds). The edibles take longer to work, but stay in your system longer so that they help you sleep later into the early morning hours. Smoking, vaping and tinctures work quickly, but also don't last as long and that can mean getting up during the night to use some more.

My expereince with cannabis was that it helped to sleep sometimes, and other times caused WED/RLS symptoms. That was true even with the same batch - of gummies, of vaped flower, of muffins made with canna-coconut oil. THC by itself (gummies) was worse. gmmuy THC with a bit of gummy CBD was better, but no better than the muffins or vaping - - unpredictable.

You might be ok if your symptoms are mild after you've re-set from the ropinirole, but many of us continue to need some medication.

The best thing for you right now might be to take oral iron in an effort to build up iron stores in your brain - that is, only if you're in no danger of iron overload (a genetic condition in which iron builds up in the body). Low levels of an iron storage protein called ferritin in the blood are associated with worse WED/RLS symptoms, and also with a greater risk of augmentation on dopamine agonist medications. It takes 3-4 weeks for iron to build up - longer perhaps, in many of us.

You might want to get your doctor to do a full iron work up - - ask for ferritin to be included, since it usually isn't. A ferritin level above 20 is considered normal by many labs so ASK FOR THE NUMBER not just "normal" "high" or "low". People with WED/RLS should have numbers over 100.

There's a nice publication that the RLS Foundation does called the RLS Medical Bulletin for Healthcare Providers, which sort of explains the iron connection. Go to https://www.rls.org/member-portal/publications? and scroll til you see it near the bottom. You can only access this page if you're a member (which is pretty cheap and gives you access to all their publcations - - and helps support research and advocay, so I pay up every year). There's another publication about iron in that list, and a webinar at https://www.rls.org/understanding-rls.