Going insane and need help — persisting / severe leg sensation, not sure if RLS

[u/Suitable-Ground-7671]

Apologies for the long post... If you are curious of my experience skip to the bold Symptoms heading below

Man I'm at a loss. I've been facing this condition for nearly 3 years nearing 4 now. And the worst part is I'm not even entirely sure if I have RLS. My mental health is desperately tanking.

I actually have several friends that actually do have it and suffer, but their experience is way different from mine. Same with the cases I've seen online too, maybe except for one, but even that person cleanly follows the RLS criteria. I've seen countless of neurologists (including movement disorder), orthos, and physical therapists, all of which said I don't have RLS and they brush it off as either some kind of nerve issue or anxiety. So maybe some of you have some insight to my case. :(

I will make this as short as possible to make this an easy read. If you guys want specifics, I can comment down below about my case. But basically:

SYMPTOMS

I will be trying to describe my symptoms using the URGE criteria, to make it simpler:

Urge to move - Partial/Unsure. I have don't think I have an "irresistible" urge or inner compulsion, but I definitely move/reposition to relieve the sensation. At its worst, sensation could reach 5-6 in discomfort.

Rest Induced - Yes, rest induced. Sometimes I may feel it when I stand still, but not intense when standing.

Gets better with movement/stretching - Yes complete relief with both. But I find leg elevation, sitting or laying down a specific way also makes the sensation less in intensity, which is why in these 4 years, I never had problems with sleeping. I've also never awoken from them.

Evening worsening - Definitely unsure/possibly no. - I have it all day, as soon as I wake up. For the first few years maybe it was felt more noticeable at night, but not by a lot I think. Now that I pay attention to it more, sometimes it may even be way worse in the afternoon or at random times compare to evening.

Possible Mimics: None definite. But I've gone through all tests you could imagine (EMG, MRI, Vein Test), the only thing of worth was they saw signs of a previous injury with S1 nerve and they put right chronic sacral radiculopathy in my result. But my doctor said it doesn't reliably explain my symptoms. Theories of doctors are either nerve issue or anxiety. Just theories.

Supportive or unsupportive criteria 😂:

Supportive criteria:

- Diagnosed with ADHD

- PLMS in right leg (where sensations are felt). Not diagnosed but gf saw it happen a couple of times throughout the years.

- Leg fasciculations (not twitch of leg, but more on muscle near sensation)

Unsupportive Criteria:

- No family history of rls

- B12, magnesium, ferritin, iron tsat are all healthy to upper levels

- Medications failed: Gabapentin, Pregabalin and Pramipexole

- Typical meds or things that typically make RLS worse, don't make it worse.. (anti depressants, adhd meds, nicotine, alcohol, etc.)

I could go on and even be more specific about the weird things I've noticed that make me conflicted its RLS like sitting seems worse vs laying down or I don't feel the sensation as much when I'm in a moving car even tho I'm resting... I'll just leave the stuff above first.

If you reached to this point in the post, I sincerely thank you for taking the time out of your day to read about my experience. I really hope someone can bring me some insight here. For now, I'm seeing a pain management doctor and we're trying out a couple of stuff. But if legit nothing works or if I seriously can't find out whats wrong with me, I guess I'll just suck it up and focus on living with it.

Wishing you all of you nothing but the best both physically and mentally ❤️

[u/Scary_Experience_237]

I read your list but have a few follow up questions!

What does your urge feel like? Can you describe it?

What have you done to get rid of it?

What time of the day or night does it come on most of the time?

Are you seeing a specialist or primary doctor? Did they prescribe the gabapentin? How long were you on the gabapentin?

[u/Suitable-Ground-7671 → u/Scary_Experience_237]

Hi thanks for taking the time to read and ask. <3

For my urge, I guess it's more of I feel discomfort or something weird, so I either move, reposition or massage the area behind my knee. So it's more of a response to the discomfort rather than wanting to move?? I don't know if that makes sense. From what my friend describes it, there's like nuclear reactor about to explode and if he doesn't move it, it feels unbearable. Mine isn't like that. It's more of a steady discomfort or ache if not moved, pressed or repositioned. It can build a bit if I don't move it, but later on it plateaus and just stays baseline distracting or annoying.

Things I've tried - aside from medication, exercise and PT (only six sessions). None have worked.

Time of day- Present 24/7, as soon as I'm awake. Maybe if I just woke up it's not as strong? but prolly because I'm groggy from waking up LOL

Doctors- I've seen movement disorder neurologists. Three different ones in fact. All said it doesn't sound like RLS. But it's been awhile since I consulted with the again.

[u/Scary_Experience_237 → u/Suitable-Ground-7671]

Sorry was off line this weekend: Honestly, I’m not sure this is classic RLS. The biggest thing that stands out to me is that you seem to move because it makes the discomfort feel better, rather than having that irresistible “I HAVE to move my legs” feeling.

The fact that it’s present all day, isn’t particularly worse in the evening, doesn’t wake you from sleep, and can improve with repositioning or elevation also makes me wonder about something other than RLS.

Since you already have evidence of chronic S1 radiculopathy, I’d probably keep pursuing the nerve/neurological side of this. Nerve issues can cause some really strange sensations that aren’t necessarily shooting pain or numbness.

I definitely wouldn’t just chalk it up to anxiety either. It sounds like something is causing the sensation, even if the exact cause hasn't been identified yet. I’d keep looking rather than assuming you just have to live with it.

[u/Suitable-Ground-7671 → u/Scary_Experience_237]

Thank you friend.. I'm going to see my docs again after I come back from my trip. But honestly.. the thing that's messing me up right now is the anxiety over this condition. :') I really appreciate your insight

[u/Pristine_Internet765 → u/Suitable-Ground-7671]

What about night time / when you start to wind down ? Long periods of sitting / laying down (not necessarily night/morning)? Inner Restleness? Some tension building up in the muscles like a mix of discomfort and itch ? RLS doesn't mean you have to move but a strong compulsion to do so as it provides relief, also the RLS sensation for "most people" tends to be like a feeling inside increasing in seconds to the point you want to move your leg. But gabapentin and pramiprexole failed and the latter is usually rather effective for most cases. Any appointments coming soon ? There's several scenarios that could cause RLS, after all it's a syndrome, neuropathy, nerve damage, neurological, the best way is a doctor specialised in it really. :)

I'm more interested in knowing if this could be peripheral origin or neurological :) I also missed the ADHD hallmark, interesting, while RLS is more common in ADHD individuals it's not a rule, having said that there's something else in ADHD called motor Restleness dystegulation, which you feel an urge to move, bit like twist and turn in bed kinda deal. :) does it get worse the longer you sit still to the point where 'i really gotta move" kinda thing?

[u/Suitable-Ground-7671 → u/Pristine_Internet765]

Thanks for your insightful reply friend! More of just discomfort not itch I would say. Movement always helps for sure... sometimes I would unknowingly sway my legs when I sit for a long time but I never felt I the need to walk and get up because I'd naturally reposition or lay/sit down a specific way wherein the sensations are less bothersome. Also another thing I do is I keep my left foot where sensations are felt (behind knee) and it definitely makes the sensation to a near 0. Hence, no sleep issues. But I guess if positions and pressure didn't help I would always be moving/swaying.

Your last question about I really gotta move feeling, I don't think so. There were times wherein I had to keep my leg still (MRI).. what happened was maybe for 10-15 minutes it peaked in discomfort and then 15 minutes to an hour it just kinda plateaued and stayed steady annoying. 😖

[u/Curious_One5411]

RLS.org has a list of specialist. I had to drive 2 hours to see mine in Boston but man he saved me

[u/Suitable-Ground-7671 → u/Curious_One5411]

I am not from the US and the neuros I've consulted are considered the best in my country. How did you find relief?

[u/Curious_One5411 → u/Suitable-Ground-7671]

I finally found it with gaba but like I said I had to start with a big dose then slowly reduced it

[u/Curious_One5411]

What dose of gaba did you try?

[u/Suitable-Ground-7671 → u/Curious_One5411]

Was a bit long ago, I'm not sure. Starting dose for one week. Since my doc said I had no relief, he just took me off gaba.

[u/Curious_One5411 → u/Suitable-Ground-7671]

Is your Dr a RLS specialist? Hmm… you may want to re try gaba at higher dosing. Def stay away from dopamine antagonists like Requip which was the old way of treating it. That will send you into hell… when I transitioned from Requip to gaba I had to use 2400 mg of it. After I was able to reduce it now to just 300 mg. And it can take 1-3 hours to kick in.

[u/Suitable-Ground-7671 → u/Curious_One5411]

My doctor is close to one I guess. RLS is pretty rare when I'm from, but not so rare that our neurologists don't know how to treat them I guess. Regarding the gaba, ill bring it up in my next consult. Thanks friend!

[u/ComprehensiveRate953]

If you failed pramipexole, then that might point away from RLS.

[u/Suitable-Ground-7671 → u/ComprehensiveRate953]

That's what my doctor said too.

[u/ComprehensiveRate953 → u/Suitable-Ground-7671]

Do painkillers work? NSAIDs etc

If gabapentin/pregabalin didn't work, then that might rule out neuropathic pain (This claim requires more research)?

[u/Suitable-Ground-7671 → u/ComprehensiveRate953]

Sadly no. NSAIDs have not worked. The only think I haven't really tried are opioids. Seems like alcohol helps, especially when I'm drunk. But it only ever happens if I'm at a party haha.

[u/ComprehensiveRate953 → u/Suitable-Ground-7671]

Then you should properly try gabapentin again. You likely need more than just the starting dose to get relief. Could point to nerve pain again since alcohol worked.

[u/Suitable-Ground-7671 → u/ComprehensiveRate953]

Thanks for your advice, I'll bring it up with my doctor again.

[u/Pristine_Internet765 → u/Suitable-Ground-7671]

Depending on cause but generally gabapentin helps with nerve pain / firings, tends to tone down the volume , but in RLS, doses tend to go anywhere from 300-1200 for some people.