I cant decide if i have RLS or not

[MarkusLib]

Hi, I'm new here. I'm a male 28, I have been struggling understanding what's wrong with my legs for a while now, and I can never seem to really hit all the right symptoms.

I have been an avid runner for years, been running for probably 10 years and been loving it. But about 5 or 6 years ago I discovered something strange. Roughly 1-2 days after doing my last run, I would get a burning sensation in my running muscles, it would wake me up at night and bother me during the day.

The only way to get rid of it was to go for another run. Over time this sensation came back quicker, and today it takes about 5-6 hours for it to return after each run. I started timing my runs just before bed to keep the pain away at night, and that worked worked well, but I would often wake up in the early morning hours with the burning sensation, and my solution would be to do squats until my legs got tired and all the pan went away.

My theory was always that I had somehow damaged my muscles and the only way to fix it permanently was to quit running, so I decided to attempt that this December, and oh boy has that been a journey.

First few days after quitting running the burning sensation was intense, pain killers helped me through it, or I think they did at least. My muscles felt like they're burning, and buzzing, and a lot of little muscle twitching

then it calmed down a bit and felt better than in a long time, then the burning sensation came back in random waves during the day or night. I decided to use Ibuprofen four times a day and remain very relaxed for an entire week, and I had zero symptoms, I thought I was free.

Then I had a really rough week at work with lots of physical activity and it came back intensely, and I haven't been able to keep it under control since.

My doctor gave me anti inflammatory medicine that I was supposed to use for two weeks to see if I had some chronic inflammation in my muscles. The medicine which is called Etoricoxib Krka (about the same as Arcoxia) Made me legs very heavy, to the point where I would have to sit down on the floor randomly, and I would get a lot of heart flutters and random spasms, where my arms would suddenly move when I was trying to sleep.

Towards the end of the first week I noticed that the burning sensation had gone away, but I was left with a new, much creepier feeling. A sort of tingling sensation inside my thighs, it's hard to place it exactly, but it feels like it's coming from deep inside my thighs, sometimes it feels close to the groin, other times the butt, other times it feels like it's moving down my thigh and down my leg.

My immediate reaction was that this was a brand new thing, that I had never experienced before. It was just as strong when laying down as when standing up, going for a walk felt very odd, as if every movement I made contributed to the tickly tingling feeling, it was almost easier to just try and lay still. First day it lasted for a few hours, came back the next day and lasted longer. Then it became a near permanent sensation, following me everywhere. Today it's been seven weeks since my last run, I finally decided to do another run and it took away almost all of these symptoms, but I can feel them slowly coming back.

The sensation feels a bit like falling, or like how when you're standing at the edge of a cliff and your legs start feeling week and wobbly.

I cant quiet decide if any of these feels like an almost irresistible urge to move my legs, which is one of the main criteria for RLS. I have been thinking about this every time I get it, I try moving me legs to see, and perhaps it takes away a little bit of the sensation? But not really, I cant decide. I usually lay still and just let it happen, moving my legs can sort of contribute to the sensation too. As I'm currently writing this on my laptop on my lap, it feels as if every vibration I make from the keyboard triggers the sensation.

It does keep me up at night, and I do get restless from being in agony, I move from side to side a lot, adjust my feet a lot, but i don't think I'm doing that due to a sensation or urge? I find it very hard to tell.

What would be a solid way to determine if I have RLS? Can taking RLS meds help me figure it out? I have a ton of anxiety rn and I'm near dropping out of my university course, as I never get a single day without this agonizing sensation. The worry seems to make me very tense, and I'm wondering if that's also a factor. My parents are sick of worry as they're noticing my life falling apart because of this. I get maybe a few hours a day where I feel normal, but that's it, is this how RLS works?

Thank you so much for reading my story

[SueJohnson]

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.

[MarkusLib in reply to SueJohnson]

1. Very unsure about this, as explained in my post. I have never experienced laying in bed moving my legs for hours as many here explain they have, moving the leg does slightly improve symptoms but not so much that I feel it's worth doing it. 2 and 4. is mostly true, I find walking and running to be most comfortable, and if I walk a lot the symptoms will be gone for a while. If I do squats in the middle of the night I can buy myself several hours of rest. But that doesn't seem like how it works for most people with RLS, as I understand it people with RLS cant just go for a 30 minute run and be symptom free for the next couple of hours.

3. I often experience evening as being pretty alright, then worsening at night. The pains continue way into the next day.

5. I have been wondering if maybe I have some kind of circulation problem, which might explain why working out takes away the symptoms for a while, I have extremely cold feet and hands

[Tiggywoos in reply to MarkusLib]

I’m not a dr but what happens if you dangle your legs out of the side of the bed ?

[Jane884 in reply to Tiggywoos]

Hi, this helps relieve the sensation of what I think is RLS, is that true for you?

[Tiggywoos in reply to Jane884]

Hi Jane I’m not even sure if mine is RLS but have had painful legs at night for 3 years bad now feet . I’ve tried iron , magnesium etc nothing helps . A warm bath makes them worse . Dangling them out does work and apparently that can also work for nerve pain

[MarkusLib in reply to Tiggywoos]

The area that feels affected with RLS for me is the thighs, the inner thighs. So not sure if dangling my legs would help a lot. I need to squeeze my thighs in order to activate the muscles that feel uncomfortable, and it does feel a bit better when I do that, but it's also somewhat uncomfortable too

[Munroist]

Doesn’t immediately feel like RLS, in particular the urge to move seems missing as well as the timing being out with classic RLS mostly being late evening and small hours. However, many people report pain rather than just an urge to move, and intense exercise also often exacerbates RLS. After a hard bike ride my legs will tingle and are often sore the next day and during the night the soreness acts as a “focus “ or catalyst for the RLS. However that soon subsides unless I do more strenuous exercise which is again different from you. So on balance it feels like there is something else going on. Some of it sounds like good old DOMS (delayed onset muscle stiffness) which most athletes experience. There are also articles which describe the nerves in the muscles being over excited by exercise which can then lead to fasciculations which sounds closer to what you are getting. Have a look at these two links. However I would say try not to panic, these things are worrying because you don’t know what’s happening yet, but you are still able to do a lot and you have ways of managing it to a degree. Try to keep an open mind and look at all options. Consider checking out things like diabetes which can have nerve implications, probably not related but the more you can eliminate the better.

sciencedaily.com/releases/2...

sciencedaily.com/releases/2...

[MarkusLib in reply to Munroist]

Thank you for that detailed reply! Yes, any exercise that tires the muscles keeps the symptoms away, the more intense, the longer it stays gone. It feels as if my thighs are the main area where I'm experiencing this tingly discomfort, more precisely the inner side of my thighs, the vastus muscles I believe. Do you know if RLS tends to stick to specific muscle groups in the legs? Can I have it in just the inner thighs and nowhere else? The vastus muscles have a somewhat awkward location and the only way I can feel that I'm using them while laying in bed is if I'm pressing my thighs together, that does give some kind of relief but it's not something I find myself doing instinctively, I usually just lay still on my belly wishing for the pain to go away

[Munroist in reply to MarkusLib]

My personal experience is that RLS is not muscle specific other than being normally the legs where is experienced and is a generalised urge to move. When I exercise hard e.g cycling many muscles are affected and my suspicion is that the activity makes me more susceptible to the underlying RLS condition but I don’t know what aspect of fatigue is relevant. So I have RLS whether I exercise or not, it just varies with whether I do no exercise, moderate exercise (best) or strenuous exercise.

[Marlayna]

Hi there. First of all I am sorry you are experiencing this. Secondly, I was an avid runner for many years also and found myself in the same position you described. In my 40s I began taking Tylenol p.m. at night and Benadryl to deal with it, two things I absolutely do not recommend. Eventually my symptoms became that of undeniable RLS because it’s migrated to my shoulders and arms now. My advice would be to keep an eye n it because my symptoms did start somewhere around your age I just didn’t know what they were. I tried giving up running and I’ll kinds of other things but that was never going to be the answer for me. How about getting your ferritin checked? At this point you might be able just to up your level of iron and knock out the symptoms.

[MarkusLib in reply to Marlayna]

Thank you for your reply! And nice hearing from another runner! I will definitely ask for a ferritin check next time, I did do a normal blood test but I assume that's somewhat different? So back when you where running, are you saying you where able to temporarily remove these symptoms by running itself? My regular route contains a lot of very steep uphill sections that are essential for me to get a good night sleep, I run them as fast as I can to try and knock out as much energy as possible, which leaves me without any discomfort way into the night. I gave in last night and did my first run in nearly two months and was again able to get rid of the symptoms, but they came back later that night and have been going at full intensity the entire day. My discomfort is primarily in the inner thigh muscles, the vastus muscles i believe, so up hill running and squats work great for me.

Thanks again for your reply

[MarkusLib in reply to Marlayna]

Oh, one more question. How does RLS feel when it affects other parts of your body, like your shoulders and arms? I have noticed waking up at night feeling very tense in my arms, and if I flex my biceps it sometimes start flexing itself repeatedly without me controlling it, and my fingers feel numb and tense. I'm wondering if this might also be stress related, as I've developed quiet intense sleep anxiety from my other symptoms

[Muso-man in reply to MarkusLib]

Hi mark. I have suffered with rls all my life (I’m 75 ) always in my legs. Sometimes thighs sometimes shins and often ankles. When I was younger like you and much more supple I used to sit on the floor with my knees bent underneath me to cut off circulation and wait until my legs were dead then hurry back to bed before it started again. Can’t do it now but I I found that sitting upright on a chair and bouncing my legs for about 15 mins also helped . However recently I found a GP who was prepared to pay more attention to my plight and sent me to a neurologist who prescribed Gabapentin because ropineral suddenly stopped working. After adjusting the dose a few times and times of taking it’s still working. Don’t give up hope help is out there. Don’t let it ruin your life get help.

[DicCarlson]

The uncontrollable urge to move is exactly that. You go to bed tried as can be. You might sleep for a short while or not, then the urge comes on and it's so compelling you HAVE to get up and walk around. On and on all night, finishing up with 2-3 hours of fractured sleep.

[MarkusLib in reply to DicCarlson]

When you get up and walk around, does it take away all of the discomfort? I tend to feel a lot of the same sensations when walking around as I did when laying in bed 🤔

[DicCarlson in reply to MarkusLib]

Yes, it does. Walking around is usually the only solution. But how do you live with no sleep? That's the rub. At the worst I would raise my legs almost vertical with couch cushions and get 2-3 hours sleep.

[Arymretep]

Oh how I know that feeling 😳

[Lou9]

Hi MarkusLib I am just wondering, do you take any regular medications? Antidepressants or similar? I suffer from muscle fatigue and twitching after an adverse reaction to SSRI medications. Have you tried taking magnesium to help ease the twitching?

[MarkusLib in reply to Lou9]

Hey, i do not. Only ever used phenergan and melatonin for sleep, which i don't take anymore. I have tremors in my hand and I'm wondering if maybe that has move over to my legs, I got prescribed propranolol for my hand shaking a few years back but never found it a big enough problem to actually start using. but might give it a go now

[restlessstoz]

Hi MarkusLib, given you've had some trouble with your hand shaking in the past and now this, it might be a good idea to go over things with a doctor just to rule out other things. Good luck with trying to sort it out.

[Jukebox55]

hi, i just wonder if you got sorted! All this correspondence was 10 months ago. I am an RLS sufferer and a physio. I was thinking that you could have a lumbar issue… nerve compression? Been down that route?? Les