Thoughts, 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.

[Polar Bear]

I am so sorry that you are suffering these awful symptoms.
RLS can occur in many places in the body but it is generally the legs and sometimes the arms.

A good check to see if you have RLS is to see if the symptoms ease, at least temporarily, when you walk about for a time. If your symptoms don't ease then I'd reconsider if it is RLS. But do check several times because just occasionally walking about doesn't east my symptoms if they are being particularly difficult.

Burning could be caused by neuropathy, mine is, and is separate from RLS.

When seeking your neurologist did you research whether or not he/she is experienced in the treatment of RLS. This is so important. Not every neurologist is well versed in RLS, not even some of those who say they are.
Have you had your blood Ferritin Serum level checked. This is very important to an RLS sufferer. Generally around 20 is acceptable but we want it to be up around 100.

However, it remains to be seen whether or not you have RLS.
Check if you find relief from symptoms when mobile. If you have it absolutely constantly but yet it does not stop your sleep that would be strange. Most RLS sufferers find their sleep very troubled.

[Cjonas00]

Thanks for the reply Betty. Unfortunately, I was referred to this neurologist as he is the only one where I live.

As for if the symptoms ease while being active and moving, usually not. I used to be an avid runner. So when these symptoms first started, I would go for walks and jogs to help try to alleviate them, nothing has worked. It is constant. When it is bad in my arms, I try moving my arms or even try doing push-ups, and still nothing.

Is the blood Ferritin Serum level checked in a basic blood test? Or does it have to be specifically requested? Because I have had my blood drawn before when all this started, and the doctor said nothing jumped out to him that seemed off. I’m not sure.

And yes, it usually doesn’t affect my sleep. The only time my sleep is ever affected is when I am anxious or stressed about something. I’ll typically get to bed without much fuss, get up maybe once or twice in the night to use the restroom, and then wake up with my alarm. It’s super puzzling what could be going on.

[Polar Bear]

Ferritin Serum is not usually part of regular blood checks and has to be specifically requested. A neurologist who knows what he's about with regard to rls would know about this.
One of the main issues with rls is that we cannot get good sleep and it is often this problem that sends us seeking help.
As movement does not ease your restlessness in any way it makes me doubt a diagnosis of rls. However please note that I speak not as a medically trained person and only from my own experience and information gleaned.
I do hope you find an appropriate expert to help you get
to the bottom of your symptoms or at least to confirm a yes or no to rls.

[Cjonas00]

Thank you for your thoughts!

[badnights]

I'm late replying to you, but it sure does not sound like WED/RLS. It sounds dreadful, though, and I hope your neurologist is figuring it out.