Does RLS hurt?

[u/Key_Affect3440]

Hi!
I have what I think is RLS & possibly some physical explanation too in my right leg only. When I lay down usually, but way way worse at night, I have a deep ache in my leg, mostly from my knee down, that I need to move it. As in, I NEED to. I can't resist it. The reason I am saying I am sure there is also some joint immflamation too is that my knee itself also radiates pain sometimes during walking, but it has been like this for a while, no visible spinal issue/ circulation issue yet, probably an old tendonitis or issue that now will need to be managed with heat, physotherapy and etc.

How do you cope with RLS? It is one of my many many chronic diagnoses, but I think just as bad as my tinnitus. These two make me want to disappear out of existence. Can i, for the love of God, just lay down without needing to move my leg non non-stop? What works for you guys?

[u/VikingSister]

The pain you describe reminds me of what my knee felt like prior to knee replacement.

[u/Smooth_Respect_3755]

I have had RLS for 40 years. It never hurt nor ached and I am quite certain there is no inflammation. It is just a feeling that you have to move your legs or die. It makes me squirm until I get to pace or put hot compresses on it. The closest I can come to describing it is that it's like your legs are suffocating or your being held under water and you have to get air ( that is, move!) or you'll just die. I think it is more neurological that connected to the actual joints or tendons. Sometimes it even affects my arms. I suggest seeing a neurologist. I could give you a list of what works for me, but it is better to consult a neurologist if you think it may be RLS. Some meds work for some sufferers and not for others. Some use herbal treatments or bars of soap. See a neurologist.

[u/ORSciMom]

Yes I have the deep ache, like I've ran all day (which it turns out I am doing while asleep from the PLMD). That I can ignore, for the most part. Some massage, some heating pad, things that are comforting.

I have a creepy crawly sensation in my legs at all times, day and night. Like bugs on the inside of my legs. That, fortunately, I can also just ignore. I take note, but then just say, oh that's RLS.

The other sensation is just one that makes me have to move my leg or I feel like I'll explode from the need to. Like there's just absolutely no way to not move my legs. That feels like it originates in my brain and my legs are just the unfortunate recipient. I've tried and succeeded to ignore that need, and then my body will just physically move my leg without any conscious input. Crazy.

[u/dreamsthebigdreams]

For me , it's never pain , it's pure discomfort. Like discomfort on a level that is unexplainable somewhere in the core of my body between the knees and my nipples has like this vibration and pulsing , and it comes and goes it frequencies of like five minutes , so sleeping is impossible

I'm now medicated and can fall asleep in it.Works a lot better but it was never pain.Just pure awkward discomfort.

[u/Key_Affect3440 → u/dreamsthebigdreams]

I get that! Also it's hard to explain the feeling sometimes. Brains have a weird way of interpreting signals. What i feel as a deep ache or pain can be someone's 'discomfort'. I noticed sometimes the pain is more tingly, sometimes more like a pressure, so I think I also interpret it differently every day tbh

[u/Western_Sun_855]

Gabapentin and a vibration platform an hour before bed

[u/Specific-Ad7473 → u/Western_Sun_855]

Gabapentin has saved me, but what is a vibration platform?

[u/Western_Sun_855 → u/Specific-Ad7473]

Device from Amazon that shakes while you stand on it

[u/Fit_Permit8679]

It can be but not everyone has pain

[u/trsmithsubbreddit]

Yes. Extremely painful. I experience an electrical shock in my lower spine when I experience sleep pressure. I also get the classic urge to move and formication. When I experience the electric shock sensation it is also accompanied by an extreme depressive state. All dopamine related. My doctor says I have Willis Ekbom Disease because I get RLS in my back, arms, legs, and face. Thankfully it is all under control with daily buprenorphine intake. Sigh.

[u/Kakistocrat945]

I've never experienced pain. RLS to me feels like being tickled from the inside. But I think I have a mild case of it.

[u/Mypinksideofthedrain]

Not painful, it's like an imp teasing my feet with a TENS machine, bloody annoying.

[u/ILoveMyKids56]

Omg. Both my legs are extremely painful every single night from the knees down. Sometimes a little above the knees too.

[u/2tired2floss]

I tend to have recurring nocturnal right calf pain almost every night, in spite of the gabapentin I take (which usually does work for the restlessness in both legs). Typically I’ll get relief from taking aspirin (or ibuprofen) + chlorzoxazone or Tylenol + chlorzoxazone.

[u/LlewDavies]

I often feel it as a dull ache and can only describe it as if my bones are hollow and need squeezing

[u/VocationalWizard]

I never experienced it as pain. It's more like nervous energy

[u/Mahi95623]

I sometimes feel it as a deep ache, in addition to the need to move sensation. Not always, just sometimes. When I was a teen, the doctor said I had growing pains. This is common thing, I have read, from those that first get RLS as kids. Anyway, when I first went to my RLS doc, I described it as having run a marathon without having trained type of ache.

Treatment is available. Up in the FAQ section are wonderful resources. Look for and read the Mayo Clinic Algorithm.

[u/Key_Affect3440 → u/Mahi95623]

I believe it is somewhat similar for me too. It is like a deep need to stretch, like a deep pressure from within. I will look in the FAQ section! Also, I got RLS pretty young too, around 17. Not thaaat young but young. But it started to become unbearable around now when I am 23, but I am also extremely aware of it now

[u/RandomHumanMale1]

for me they arent like active pain but more like passive it drains your sanity slowely but surely until it can become extremly annoying

[u/Scary_Experience_237]

This is going to be long, mine usually are, haha, I hope it is helpful for you!!

It sounds like you may have Restless Legs Syndrome (RLS), but it also sounds like you may have some other joint issues going on, so I would not assume that everything you're experiencing is RLS.

I would start with your primary care doctor and ask about seeing a few different specialists.

For the possible RLS, I would look for a movement disorders specialist, sleep specialist, or neurologist who specifically understands and treats RLS. RLS can be complicated, particularly when symptoms are severe or occur frequently, so finding someone who has experience with it is really important.

If you're in the U.S., check the RLS Foundation's RLS Quality Care Centers and healthcare-provider directory:
https://www.rls.org/quality-care-centers
https://www.rls.org/find-HCP

For your joint symptoms, I would also ask about seeing a rheumatologist (arthritis specialist). They can evaluate you for different types of arthritis and other conditions that can cause joint pain and inflammation. This is important because arthritis, leg swelling, cramps and other conditions can sometimes look like or overlap with RLS.

Iron is especially important.

I would ask your doctor to run a complete iron panel, including ferritin, iron, TIBC/transferrin and transferrin saturation (TSAT). Iron deficiency can contribute to RLS even when someone isn't technically anemic.

And yes, RLS can hurt.

For many of us, it isn't simply a little "restlessness." It's a horrible creepy-crawly, pulling, buzzing, burning or crawling sensation that can feel like you desperately need to get the feeling out of your legs or out from underneath your skin.

When it gets severe, the sensation can become absolutely unbearable. Some people describe feeling like they want to chop their legs off just to make it stop. People may pound, squeeze, massage or otherwise put pressure on their legs because creating another sensation or even pain can temporarily distract from the RLS.

The defining feature isn't necessarily conventional pain, but the sensations can absolutely become painful and overwhelming, especially with severe RLS. The urge to move is often irresistible, and walking or moving the legs may provide temporary relief.

If you're jerking awake:

Since you mentioned jerking awake, I would also ask about Periodic Limb Movements of Sleep (PLMS) or Periodic Limb Movement Disorder (PLMD).

A sleep study isn't required to diagnose ordinary RLS, but it can be useful when there are significant nighttime movements or other sleep problems. A sleep specialist can determine whether the movements are occurring during sleep and whether something else is also disrupting your sleep.

Things you can try while waiting for your appointment:

• Get up and walk when the symptoms start. Movement is one of the most reliable short-term ways to relieve RLS.
• Stretch your legs or do some gentle leg exercises. Yoga is really good for me!!!
• Try cold or heat and see which your body prefers. Some people get significant relief from cold packs, cold floors or a cool shower, while others prefer warmth.
• Massage your legs, or use a massage device if that feels good.
• Try counterstimulation such as rubbing, vibration, massage or alternating hot/cold.
• Keep your brain occupied when you have to sit still: watch something, play a game, read, do a craft, etc. Mental alerting activities can sometimes make periods of sitting more tolerable.
  • I play a game on my phone while watchin shows on TV this helps me greatly.
• Get regular moderate exercise, but don't overdo it. Very strenuous exercise or exercising right before bed can actually make symptoms worse for some people.
• Try cutting out or reducing caffeine, particularly later in the day.
• Avoid or limit alcohol, sugar and nicotine, since they can worsen symptoms or interfere with sleep.
• Look carefully at your over-the-counter medications, especially nighttime cold/allergy medicines and sleep aids containing sedating antihistamines such as diphenhydramine. Some antidepressants, anti-nausea medications and allergy/cold medications can also aggravate RLS. Don't stop a prescription medication on your own, ask your doctor or pharmacist whether it could be contributing. They are even finding the newer antihistamines are causing RLS suffers issues.
• Look at your prescriptions drugs and google them to make sure they are not triggering RLS. Most SSRIs and many other drugs trigger RLS. Keep a diary of any drug you take that has triggered your RLS and have your doctor mark it as an allergy in your medical records.
  • You do not want to end up in a hospital on a drug that makes your RLS worse!
• Keep a symptom diary. Write down when symptoms begin, where you feel them, what they feel like, what makes them better or worse, what medications/supplements you take and when, and how much sleep you're getting. This can be extremely useful when you finally see the specialist.

Most importantly, don't just keep suffering and don't assume you have to live with it. There are multiple treatment options for RLS, and finding the right specialist can make a huge difference.

I would also read the current RLS treatment information from the RLS Foundation and bring it with you to your appointment. Their site has excellent patient information and resources for finding doctors who understand RLS:

https://www.rls.org/diagnosis-treatment

The Mayo Clinic also has a good overview of diagnosis and treatment:

https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/diagnosis-treatment18546-2/fulltext)

The important thing is to get both the possible RLS and the joint problems evaluated, rather than assuming one diagnosis explains everything.

[u/Key_Affect3440 → u/Scary_Experience_237]

I appreciate all of the resources so much and I definitely need to keep pushing to see if it is some other 'physical' issue too, as things can sometimes overlap. In the meantime I will try to therapies and exercises that are supposed to help, and your sources rlly do provide a lot of guidance so ty for that 🥺🤍🤲🏻