Update on symptoms from last post - still unsure or RLS

[RLSquest]

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

healthunlocked.com/rlsuk/po...

(Last post)

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.

[Joolsg]

Here is the diagnostic criteria from RLS-UK website.rls-uk.org/symptoms-diagnosis

I don't think it's RLS.

You don't have the irresistible need to move.

You get symptoms even when moving. Your symptoms are not worse at night.

As others advised- it is a neurological condition, but not RLS.

As it happened shortly after Covid infection it sounds like Long Covid neurological damage and you will need to see a doctor who has expertise in Post Viral syndromes.

One medication that is common for burning/tingling sensations is Amitriptyline. It helps burning nerve pain.

But it makes RLS much worse.

You could ask to see a neurologist and trial Amitriptyline. If it makes your symptoms worse- it might indicate you have an atypical type of RLS.

If it helps- it would indicate you have nerve dysfunction.

Try to find a Long Covid help group via social media. Facebook /X have lots of long covid groups.

[RLSquest in reply to Joolsg]

Thank you for your answer Joolsg.It is worse at rest but I haven't consciently observed if night time or daytime. I will focus on that tonight and let you know how it feels.

[RLSquest in reply to Joolsg]

I have tried to focus the precious days and today. And the nervousness that makes me feel like Moving my leg seems to be all day long. I can keep my leg still when I am at work but it is uncomfortable. Also I am focusing on it because I have a hyperawareness of my symptoms.The fasciculations/myokimia and the little buzzing in the toes also seem to be all day long.

Isn't that weird ?

[Joolsg in reply to RLSquest]

That is why it is unlikely to be RLS.RLS is linked to dopamine dysfunction. Dopamine is lowest from 6pm in the evening until 5 am the following morning. RLS follows the dopamine cycle and is worse at those times and wakes patients several times a night. They have to walk. Not moving is impossible.

So it definitely sounds as though you have peripheral neuropathy caused by the Covid virus.

Anti virals would be helpful- you need to push to see a specialist in Long Covid symptoms.

Good luck.

[amrob123]

Seconding Jools's comments, i don't believe it's RLS. Mainly because your symptoms start in the morning, and because walking doesn't bring relief.

It's less common to have RLS in the daytime than in the evening, and even less common to have it in the morning. (I get periodic limb movements first thing in the morning before i'm fully awake but that's separate and quite different to what you're describing).

Also as Jools suggests, if your symptoms started following COVID or some other virus, it might be worth posting on Long Covid forums to see if anyone has experienced anything similar.

What is your doctor/neurologist suggesting that it is. Do they have any ideas?

[RLSquest in reply to amrob123]

Thank you amrob123 for your answer. My symptoms do happen in the daytime also. Walking does bring relief but while walking, some phases of the walking movements/positions feel internally "tickly". So hard top explain.

[RLSquest in reply to amrob123]

And neurologist and doctors suggested nothing. They want to give me gabapentin so I stop bothering them.

[Madlegs1]

Don't rule out any medication because it is said to intensify RLS symptoms.

Because if it is some neurological problem, then they would be the correct route to go.

Amitriptyline is often used in these cases. Also Pregabalin and Gabapentin.

I experience parasthesia in my left thigh, which shows as intense pain in a sheet from thigh to above the knee. Massaging it helps ,as does stretching the thigh muscles. But it never completely goes away.🥵

It might be worth checking out if the symptoms coincide with your experience.

I really think you need to get RLS out of your mind and look at neurological issues.

I hope you can get some relief soon.

All the best.

[RLSquest in reply to Madlegs1]

I am so sorry to hear that you experience those painful paresthesia.In my case, there isn't any pain. I had one day when I experienced stabbing pain episodes in my left ankle. It was few weeks ago and that is when I decided to get checked for small fibers neuropathy. But the exams showed nothing.

May God help us with our conditions.

[Merny5]

I too agree with Jools. This sounds horrible. I hope that you can get some answers🤞🏼

[RLSquest in reply to Merny5]

Thank you. It is not easy I confirm. And also so confusing not being sure what is happening.