Do I even have RLS?

[Cjonas00]

Hello everyone, I am very concerned with some symptoms I’ve been having here of late, and would love some opinions on if I even have RLS because some other folks have told me they don’t think so.

In early 2020 I got severe anxiety symptoms, so my doctor got me on Zoloft. Well after a couple months, it was making me feel like a zombie so I decided I wanted to try to wean off. Following my doctors instructions, I weaned my self off. As I did this though, I got INTENSE restless symptoms in both my arms and legs, immediately. The urge to move and stretch was crazy. And it was all day long, not just at night. The symptoms were not worsened at night either, it was just a morning to night, all day strong symptom. I convinced myself it was withdrawal and tried to live with it until it went away. Well after about a month, it was unbearable, so I spoke with my doctor and he put me on Duloxetine to help with my anxiety about it.

The duloxetine did not worsen the symptoms, and actually ended up helping me with my anxiety and depression about it. The symptoms never went away, I just learned to deal with them. I stayed on duloxetine for about a year, before deciding to have my doctor help wean me off in October of 2021, because I felt mentally stable, and was in a good place.

Again, the strong restless symptoms never went away. They are strong from the moment I wake up to the moment I go to sleep. Every single day.

The past year has been overall really good, though there have been some major changes going on. I got married to my beautiful wife, graduated college, returned to college to go for a second bachelors degree, and my grandfather recently passed away. But overall, my mental health had been stable. And have had no problems functioning or sleeping with these restless urges.

Well I just turned 22 this year, in August. About 2 weeks after my birthday, in early September, I was having this weird sensation in the back of my head. It was like my brain was being constantly tickled, and I noticed I had some small sensitivity to light. So I figured it was a weird headache. I took a Tylenol and ignored it and went on about my day. Well after two more days with that sensation, I started really freaking out. (I have terrible anxiety, and when something feels unnatural, I tend to spiral and freak out bad.). I went to the ER, they took a ct scan, and it showed that there was no fluid or mass, so they requested I make a neurologist appointment. So that’s what I did, I got a neurologist scheduled.

The next day, I woke up with my arms and legs burning terribly. Like it actually felt like they were completely burning. The tickling feeling that was giving me so much anxiety, started moving to other places though. It was moving to my jaw, my neck, my chest, my abdomen, my genitals, my anus, literally it was jumping place to place, scaring me terribly. My lips and tongue felt like they were burning too. I have noticed the bottom of my feet and the palms of my hands getting hot too. At this point, I completely spiraled mentally because I thought something was terribly wrong with me.

I emergently saw my personal doctor. He put me back on duloxetine to help with my anxiety and depression. He said he honestly isn’t sure why I could be having all these sensations, and wanted to wait until the neurologist saw me to have a follow up appointment.

Well finally after almost a month of waiting and freaking out. I saw the neurologist yesterday. He spent about 2 minutes checking me out, and then prescribed me a medicine for headaches (which was t even my main concern). And ordered an mri to be done, which could take another month to get done. And after the mri, he wants to follow up with me again.

I am now waiting for a follow up appointment with my personal doctor this next week. But I am not sure what this is. For the longest time I thought I had RLS. Now with all the symptoms I’m having, and at the age I’m at (22) I feel like I would have to be the most severe, most rare case I’ve ever heard of. So I’m wondering if I have RLS or something else completely.

[XenMan]

I'll have a go at a reply for you.

There are numerous conditions that are motor and sensory related. That is, that the brain doesn't like the signals it receives from the body or there is heightened sensitivity in the brain. There are symptoms from this discrepancy that are generically referred to as 'restlessness'.

People who work in mental health are aware of the impacts of many drugs, either due to taking or withdrawing, that have this feeling, as well as mental health conditions.

RLS has become a very generic term and for those that have no other symptoms or health issues it is usually described as Willis-Ekbom Disease (WED).

As you can find on this site and other areas, there isn't a clear mechanism but lots of different and inconsistent treatments, symptoms and signs.

So there is no simple answer to your question and my response would just be an opinion.

[badnights]

Hmmm it really doesn't sound like WED/RLS. Your symptoms are daytime, whereas WED/RLS is by definition a nightime disease.

Do the symptoms they prevent you from falling asleep? If not, it's probably not WED/RLS.

Does walking or using your muscles alleviate the urge to move? If yes, that is support for it being WED/RLS; if not, it's not WED/RLS.

But the fact that you've been on and off SSRI (duloxetine/Cymbalta) and SNRIs (sertraline/Zoloft) is suspicious, because they have both been known to cause RLS-like symptoms in some people.

Your symptoms came on after stopping Zoloft, but maybe it had just built up to the level at which it was going to cause restless-type symptoms (often takes a few months). Then you were given duloxetine, which might (for you) have encouraged the symptoms. The only anti-depressant that seems safe for all WED/RLS patients is Wellbutrin, but it's not always particularly effective.

Some people here take SSNR and SSRI ADs without any worsening of their WED/RLS. Others, who take ADs that worsen or cause WED/RLS, also take other medications to treat the WED/RLS. In an ideal world, I would recommend that you ask your doctor if WED/RLS treatments might eliminate the RLS-like symptoms. But, sadly, I am confident that no doctor you are likely to ask would have a clue. I think it's worth a try, but I'm not a doctor. Also I am scared that an ignorant doctor might prescribe dopamine agonists for you without checking your iron and ferritin levels.

But, since this is the world we live in, my advice is first you and your personal doctor might want to check out Wellbutrin. Then, if that doesn't help, you probably should ask your doctor (even though he won't likely have a clue) if you should try one of the medications that are used to treat WED/RLS, in case you have medication-induced WED/RLS. There are three classes of meds used to treat WED/RLS: the alpha-2-delta anticonvulsants, the dopaminergic meds, and the opioids.

Alpha-2-delta anticonvulsants are not usually prescribed to people with depression, because they can have depression as a side effect, but sometimes they don't, and they can be effective. Dopaminergic meds carry a high risk of worsening the WED/RLS after an initial honeymoon period. This is called augmentation, and is less likely if your iron levels are good AND your ferritin is above 100 (note that "normal" for ferritin is 20 for someone your age). As for opioids, they're probably safest and most effective, but they are not front-line treatment due to the risk of addiction.

So you could ask your doctor to try a dopamine agonist, probably pramipexole (brand name Mirapex) but for godsake get your iron tested first. You should ask for a regular iron panel PLUS a 12-hour fasting serum ferrtin, politely ask your doctor if that would be reasonable to request. There is a lot of evidence linking low serum ferritin to worsened outlook for augmentation on dopamine agonists. Get the ferritin number, not just words "it's normal" because you want it at least 75, preferably over 100. If it's below that, take oral iron with vitamin C on an empty stomach (or with food if it hurts too much) to raise your serum ferritin. This will decrease your risk of augmenting on the dopamine agonist.

And don't take any more than 0.125 mg pramipexole to start - the drug is used mainly for Parkinson's Disease, and for that, higher doses are normal, but in WED/RLS, augmentation is linked to higher doses than 0.25 (start at 0.125, increase up to 0.25 but no more). Keeping the dose as low as possible, leaving some small amount of symptoms untreated, can keep augmentation at bay.

I hope this is not too much information ....

re the neurologist - - give him time. He could not tell anything from the symptoms you presented with, so he ordered an MRI and he's hoping like heck it show him something. You can hope like heck too, and maybe the neuro will come up with something!