RLS pain

[ziggypiggy]

Pain reported in association with RLS is the red headed step child of symptoms. I believe it is under reported, often misdiagnosed and not taken seriously by doctors and even by fellow RLS sufferers who experience no pain. We have enough evidence to know that RLS pain symptoms (like restlessness) occur on a spectrum from none to severe. From achiness or burning, to sharp pains or dull. Statistics would then suggest there are those who would manifest RLS as aches or pains only with little to no desire to move ones legs ever.

Because the definition of RLS must include a desire to move ones legs, I'm guessing there are sufferers out there with pain only symptoms who are being treated (if at all) for something completely different. They could be benefiting from RLS treatmeant like iron therapy or medications. They could be provided with information on RLS triggers to avoid to ease the pain. You get the point.

Makes me wonder if the diagnosis of RLS should be expanded in the future to include the possibility of pain only RLS.

I write this as on a personal note I do get pain only episodes of RLS. Some are definitely triggered related. They do resolve with my regular RLS treatment.

[LotteM]

Interesting point of view. There are several papers that mention specifically also the pain component, so it is recognised, at least by some researchers. As my memory is bad, I don’t k ow whether I came upon it in the recent Nature paper on genetics of RLS or in the two opioid/endorphine papers of warlier this year.

I do recognise the pain component as I experience that too. Since I started buprenorphine over 3 years age I hardly have RLS any more. And if so, mostly mildly. And often I would indeed explain my symptoms more as painful rather than itchy or electrical (the latter aspect is kind if painful to me too). And especially when painful, I feel the need to punch or massage or fiercely stretch my legs more than to move them.

[Madlegs1]

Back to the old discussion on neuropathy v RLS.

[ziggypiggy in reply to Madlegs1]

Definitely could be be a subset of what I'm referring to. Neuropathy can be tested for, even small fiber neuropathy. If tests are negative do doctors just label it as idiopathic and treat it as such? What if it's actually RLS pain?

[Madlegs1]

That's why the "urge to move" is such an important criteria for rls.

[Joolsg]

Interesting post.The most important criteria, stressed by all experts, is the uncontrollable URGE to move.

I have severe nerve pain from my MS neuropathy, but it is completely different to the RLS sensations and that nervous, pent up, heightened, stressful NEED to move.

It's essential to get the diagnosis correct because the best meds for nerve pain are anti depressants (particularly Amitriptyline) but that sends RLS symptoms through the roof.

There is definitely an RLS sub set that experiences pain, but the URGE to move remains the most important diagnostic tool.

There is also a subset that experiences zero sensations in limbs, just the overwhelming urge to move.

Do you have pain, but zero urge to move?

[ziggypiggy in reply to Joolsg]

Definitely I have all the combinations. At times I have no pain only urge to move. Sometimes I have both. And sometimes pain only with no urge to move at all. I understand the definition. I just feel the need to weed people out by the urge to move feels somewhat arbitrary. If pain alone can't qualify as RLS by definition then what? We are not saying the urge to move causes the pain. It's the underlying syndrome? causing both.

I'm suggesting pain and the urge to move can be mutually exclusive. The pain can exist without the urge to move and vice versa.

The definition is the limiting factor.

And of course the stupid name it's given.

[LotteM in reply to ziggypiggy]

Same here re all combinations.

[Ilovequilting]

I thought I was alone with experiencing pain with RLS. When it is at its worst I feel electrical sensations that make it impossible to sit or lay down. When I was younger it was just the urge to move, over the years the symptoms have worsened.

[grassgree]

There was a post here some time ago from a person who had sudden pain in her hand, from some kind of incident. I don't remember if she burnt it accidentally or what. But the pain in her hand set off RLS in her legs. When the hand pain was relieved, the RLS stopped.

I have sciatica in my right leg. When it is aggravated the urge to move goes crazy too, but only in my right leg. There must be some kind of neurological feedback loop.

[Elisse3]

I get pain with my RLS and definitely have the urge to move the pain feels like it’s the muscles if i rub my calf which is where i get the pain it’s extremely painful. Always have that pain and RLS if my meds not working , meds working the no RLS and no pain.

[jebsat]

I have the pain of all types...sometime burning, sometime throbbing, sometimes tingling.. I could go on. The urge to move is only as someone stated...the urge to stretch or receive massage...neither of which relieve the pain. I am currently NOT on meds and trying to decide what to do next. Gabapentin made things far far worse about a year ago so I stopped; ripinerole did nothing at all; I have started to keep a log of how exercise may make my legs worse. But I can't give up fitness (still losing weight from the gabapentin). I think my legs were made worse by ACL surgery but this is only anecdotal...cannot prove the connecion of course. My quality of sleep varies. THC gummies are helping somewhat but they're not cheap. I have started iron every other day as suggested. I welcome any and all suggestions of where to go from here.

[SueJohnson in reply to jebsat]

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[Mongolia2020]

I had pain, now gone. before I knew it was RLS, as most of us have done, I tried all sorts of things to try to alleviate my symptoms. At one point I went to a chiropractor for about 12 months. My pain disappeared and I have a look ways considered that the pain, although not sciatic, was caused by spinal misalignment. After reading ziggypiggy’s post, it seems that perhaps it always was RLS. The pain was often severe, especially if I had been on my feet a lot of the day, or done a lot of excercise.

One day the pain disappeared and has never returned. My other sensations however, have continued.

Has anyone else experienced this?