Does this sound like RLS to you ?

[RLSquest]

Hello everyone,I am new to the forum.

I am a French woman, 33 yo living in Paris area.

Since beginning of january, I have been experiencing symptoms that have been increasing quite quickly. It went from nothing to daily symptoms overnight and the symptoms have augmented in a month.

All exams are fine (medular MRI, brain MRI, EMG, sérum ferritin at 142, kidney function OK).

My symptoms are as follow :

When I wake up in the morning and still lying in bed, my left foot and leg start vibrating internally with a frquence like a cell phone vibrating

Then I start my day : I have a computer sitting job so I start working and I start having fasciculations like sensations in my legs and little TNS like buzzing in my toes. This happen mostly in my left leg and foot and when I get this on the right leg, it is very light and not that bothering.

I have some twitches in my left leg also, as if the internal vibrations were too strong and sudden and triggered the twitch.

I also have numbness in my left big toe and it is more sensitive than usual when it touches the blanket for instance.

These sensations seem to worsen as the day goes by until night time.

I can sit still or go to bed but the anxiety that all of this is creating keeps me from sleeping.

Last night I slept with a 10mg seresta which has calmed my anxiety enough to allow me to sleep.

At night when I stay still and try to relax, the sensations lessen and even disappear, but then if I change position, they come back (even with new ones) and take some time and relaxation again to calm down.

My husband says I dont move when I'm asleep so no appearanr PMLD for the moment.

Maybe not related but : on my left thigh, while massaging, I found a point that triggered a tingle between my second and third toe. Does it everytime I massage it. Last doctor I saw (who thought of fibromyalgia) thinks it is related to the hypersensitivity in that leg caused by fibromyalgia.

I know this is a lot to read, but I know some of you guys have become experts on this forum and would like your opinion on this, since it is quite confusing and happened so quickly even during the day.

Thank you on advance for your support

[SueJohnson]

It doesn't sound like RLS at all. With RLS you have an urge to move your leg which removes the sensations for the time you do it.

[RLSquest in reply to SueJohnson]

Thank you for your reply SueJohnson I have had COVID in early december, so one month before the symptoms started.

Also wondering if the symptoms are not long covid related.

[RLSquest in reply to SueJohnson]

Another precision : I do not have the urge to move my legs but if I do, the sensations in my feet and legs do go away. (But I don't know if it is enough to tell rls or not).

[SueJohnson in reply to RLSquest]

Here's the full way to tell if it is RLS'

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[RLSquest in reply to SueJohnson]

Thank you for your help and prompt reply.

[Goldenpaws3 in reply to SueJohnson]

Thank you for listing all the symptoms that are required for RLS Dx. I met all of those. Are Charlie horses common?

[SueJohnson in reply to Goldenpaws3]

They can be a symptom.

[Madlegs1]

It sounds like some form of neuropathy.

Perhaps even paresthesia, as it starts in your thigh.

Do Google these two conditions to see if they agree with your experience.

Good luck.

[RLSquest in reply to Madlegs1]

I thought of this too, especially since COVID can leave people with some neuropathy symptoms for months after infection and I had COVID in early december. The EMG was OK though. But I read that small fibers neuropathy are not shown in EMG, only large fibers ones are.

[Madlegs1 in reply to RLSquest]

Look at paresthesia as well!

[RLSquest in reply to Madlegs1]

Thanks, I will check if paresthesia matches with my experience.

[CarnivoreTony]

This might sound crazy but try not eating nightshades for a month (tomatoes, peppers, potatoes, eggplant, etc.).

[RLSquest in reply to CarnivoreTony]

I will definitely try carnivore diet. Because last night was horrible. A constant annoying and a bit painful stinging feeling on my feet (more intense on the left) which went away temporarily when I moved or got up to go to the loo. But came back few seconds after going back to bed, providing me from sleeping. I tried elevating my legs which barely helped. My husband carressed my legs to help me and while je was doing it, it calmed the stingings down. It came back if he stopped but he kept going so I was able to fall asleep around 3am-4am I would say.When I woke up at 7:30 , I felt my feet normal. But it felt like as soon as I noticed that, the vibrations and stinging started (less intense than at night but still annoying).

[CarnivoreTony in reply to RLSquest]

Definitely sounds like RLS to me.

[RLSquest in reply to CarnivoreTony]

I am hesitating between RLS and long COVID neuropathy... There are some similarities.

[amrob123]

It doesn't sound like RLS to me. Perhaps look into benign fasciculation syndrome. Apparently that can sometimes be triggered by a virus.

[RLSquest in reply to amrob123]

I was confident till last night. I had the worst night with stinging feeling in my feet (more intense in the left one). And it provided me from falling asleep as the sensation was uncomfortable and painful. I dont have the "I have to move" message coming from my brain, but I did notice the feeling went away with movement or walking (when I hot up in the night to go to the loo), of lessened when my husband started carressing my feet and legs to try to help me sleep.The thing is (and I wonder if it is the same for everyone) : when I woke up in the morning still lying in bed, I felt normal, but the second I noticed that the weird sensations were gone : the throbbing and stinging came back (less intense than last night though).

I was so tired that I stayed in home office today.

So I am not that confident after that night.

[Munroist]

It sounds like neuropathy or some sort of nerve issue. I have had back problems which affected the nerves and I have experienced some of these issues. They went away or reduced as my back healed.

It might also be related to COVID as you suggest.

The fact that you get a response in your foot by pressing your thigh sounds quite reasonable when you understand where your nerves run .. if you google "innervation lower limb" and look at the images you will see diagrams of how the neves run from where they exit the spinal cord, down the legs and into the foot. If a nerve is aggravated then it may be quite sensitive and cause the responses you suggest. On occasions I was able to make a muscle in the front of my thigh twitch when I pressed the side of my thigh

The difficulty is likely to be working out what is affecting the nerves. For me it was a slipped disc in the back. You say your job involves sitting at a computer .. that can cause gradual weakening of the core and back muscles and depending how stressful the job is can also cause tension which may affect your spine. I had a similar job and it was part of the problem. Of course if you are active and do things like walking. running swimming, yoga, Pilates etc. then that should be enough, combined with regular breaks from sitting

Bottom line is that I don't think it is RLS, as others have said.

[RLSquest in reply to Munroist]

Thank you for your testimony. I have done a lumbar MRI that showed a beginning of discopathy in L5 and S1, but the doctors said that it is too light to cause such intense symptoms.

[Munroist in reply to RLSquest]

My MRI showed that there was "abutment" of the disc with the nerve but it was "just" touching and not pressing and they also felt there was sufficient space in the spinal canal for it not to be dangerous. They were right about the second point (so far!) but I am pretty sure that in certain circumstances and positions the pressure on the nerve is greater and over the last 6 years and after working with some very good therapists I have realised that there is a problem but it can be managed with good exercise and care and pacing myself.

MRI's are normally done when lying down so you don't have the weight of your torso pushing down on the disc to squash it and your spine is also in a relatively good position as you are not bending or twisting so what they see is best case scenario. Most doctors will also openly admit that what they see is not necessarily the same as what you feel. Many people have said to me that they see scans with problems but the patient is fine and they also see scans which look clear and the patient does report a problem. MRI's will spot the worst case problems but are not infallible.

I found over time I became more aware of what is going on with my back, what makes it good and what makes it worse. Certain chairs are better and certain mattresses help. Remember our bodies are always trying too heal so what you feel now is not necessarily how it will always be. Good posture and careful core exercise from Pilates combined with supportive chairs have enabled me to return to the active life I enjoy. Good luck.

[Merny5]

It’s a shame that you are suffering and the cause hasn't been diagnosed!I personally don’t think that it is RLS either. For your sake, I hope it isn’t.😬 It does sound like some type of neuropathy. Good luck to you and let us know what it is when you figure it out.

[RLSquest in reply to Merny5]

They think it is small fiber neuropathy induced by COVID. Suffering day and night. Not sleeping. Anxious all the time since there seems to be even less treatment for this condition than for RLS.

[RLSquest]

Hello everyone,I am giving some news about the symptoms here, since it has now been more than a month with symptoms.

I have done a laser evoked potential to rule out 70% or chance of small fibers neuropathy. It came back normal.

I still have the symptoms (tingling in feet like tens unit, internal vibrations/throbbing, toe cramps, fasciculations like muscle twitches -sometimes when sitting I even got them in the back of my thigh or in my butcheek-, and sometimes my toes of feet or even leg spasms/jerks especially when falling asleep).

When my husband massages my legs or buttcheeks at night to relieve the tensions, the sensations of the massage in the left leg (the mainly affected side) are sooo different than what is feels like on the right side (the kind of normal side). My left leg is the one that kind of feels "nervous" when I am sitting and /or lying down.

So when he massages it, it's relieving but in a different way than the other. It's almost like the massage relaxes but tickles at the same time when he touches some parts of the leg/foot/buttcheek.

I also noticed that I have the unconscious tendency to lightly but constantly contract my left leg entirely (buttcheek, thigh). I notice it when I put attention on my leg and realize it is tensed. So I voluntarily release the muscles. But when I do do, I feel the symptoms (nervousness, twitches/fasciculations) even more.

So I came to the conclusion that I unconsciously keep it tense for the symptoms to bother me less. Without even realizing I am doing it (like some people modifying their posture unconsciously when they feel ache Somewhere).

What my husband finds weird is that my symptoms start in the morning, whereas people who get them during the day are generally advanced cases, not people who have had it for just two months. I have talked with a guy also in France who told me that at first, it was just in the evening and it took years for him to get the symptoms in the day.

Sometimes even when walking or doing some movements or switching some positions, I feel it Can trigger the "kind of internal tickle" nervousness feeling.

I would like to know what are your thoughts regarding these updates? SueJohnson Merny5 Munroist amrob123 Madlegs1

You all have been so incredibly helpful so far and I thank you for that.