Pelvic pain and rls: Does anyone else... - Restless Legs Syn...

Restless Legs Syndrome

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Pelvic pain and rls

thedragon profile image
29 Replies

Does anyone else get pelvic symptoms with their rls. To me it feels like I have the rls in my feet and legs .....mainly left.....and the "pain" ....not quite the right word...travels into my pelvis like when the ladies do their pelvic floor excercise, but I have no control over it . I can try and resist the sensation but have to " go with it" in the end. It's like a strong childbirth contraction....I'm sorry to be so graphic but it's bad and very distressing and tiring.

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thedragon profile image
thedragon
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29 Replies

Hi dragon, they only thing i find helps is sitting in a hot bath, it does help a bit for me

nightdancer profile image
nightdancer

RLS symptoms can be felt almost anywhere, literally, and yes, in the pelvic area, too. Pick whatever RLS web site you like the best and more and more of them are saying that the RLS sensations can be felt in any part of the body. ON sciencedaily.com you can do an RLS search, and I swear on my mother's life that there is also a condition called "restless genital syndrome" which is a true real syndrome. I always hesitate before I bring that one up, because obviously the jokes will write themselves, unfortunately. ;( But it is real, so just sayin' you are not alone in that part of it either. I hao have not ever had that issue, but I DO know others who have it, along with RLS. We may find out that they are one and the same thing. You never know with RLS, now do we?? We are always searching.

nightdancer profile image
nightdancer

Also, health.com has a great RLS section, too, just for some variety. ;)

thedragon profile image
thedragon

Thanks nightdancer..it sounds similar, but not the same

nightdancer profile image
nightdancer in reply to thedragon

just throwing ideas out there.

Raphael profile image
Raphael

Hello thedragon,

In reply to your description of RLS in the pelvic area I thought I would never hear from another soul who suffers with this. I have had RLS for 50 years and it has always been in the same area. I obviously do have to move my legs to aleviate the spasms but like you I have always dscribed my RLS as being like labour pains. Mine start from the back and work round to the front like labour and take my breath away until I move to stop it. I am wondering if I have described it like yours. Nobody I have ever spoken to doctors or fellow sufferers have ever understood what I have been trying to explain.

thedragon profile image
thedragon

Oh Raphael....I am so pleased to hear from you....it's always been this sensation....I've had it for 40 ish years. It's not like the link nightdancer mentioned...there is no "arousal" involved!!!! That's the furthest thing from my mind! I've often wondered if it is rls or some sort of pelvic irritation but it always involves the feet and the legs. I have never really mentioned it before here due to embarrassment...but I was so low the other night with it I just had to ask for help!!! It's so good to hear from you as I've never heard anyone mention it.....I always feel that if I went to the loo (both ways) or if I eat something ....it would help but it doesnt. I am past the point of embarassment.!

tellie5044 profile image
tellie5044 in reply to thedragon

just so you know people with Restless Genitals syndrome have no arousal of their brain or even at the time of the RESTLESS feelings or sensations. Its just that the Restless feeling like you feel in the legs are also in the genitals of people suffering with Restless Genitals Syndrome rather than the legs. The reason their a sort of arousal feeling with it as it's so close to the sexual organs and can feel like an arousal but is NOT AT ALL. The person with RESTLESS GENITALS has the restless legs feeling in their genitals as well as their legs all the time and they are not AROUSED EITHER or thinking of anything sexual AT ALL. I hate the stigma people have with this Disorder. I feel bad for people that suffer with Restless Genitals as they are not aroused its the same issue going on with the legs just that its so bad it's also in the genitals/pelvis. Some people have restless legs feelings in their arms too does that mean that they are using their arms at the time of the feelings NO. Its only an arousal feeling with restless genitals because of the close proximity to the bladder and the sexual organs.

Patsy11011 profile image
Patsy11011

I have had this a few times only, but it was consistant for a few weeks more like muscle spasm in my back passage! (sorry about that) a hot water bottle helped. You may find it is due to one of your medications, some of them cause muscle cramps.

thedragon profile image
thedragon in reply to Patsy11011

Thanks PATSY. Its not medication caused though as its been going on too long!

thedragon profile image
thedragon in reply to Patsy11011

No its def RLS. Its been like that forever using no meds ..but thanks

thedragon profile image
thedragon in reply to thedragon

Sorry...I've already replied to this a long time ago!!!!

insect profile image
insect

Which area do you call your pelvis?

Hip pain is in the groin. The hip is not the same as the pelvis: which is what most people call the hips! : which is the bony area which the buttock muscles cover - glutious maximus if memory serves me correctly. Maybe memory doesn't .........

Sciatica pain is over the buttock, behind the buttock, down the legs as far as the ankles. The pain can miss the middle part of the leg and affect the ankles and feet. The sciatic nerve is HUGE! This is NOT the same as restless legs syndrome. Sciatica - which is what it sounds like as a long-term sufferer - is caused by low back spasm - usually mine begins when I don't bend my knees to garden or put the dog's collar on - and is eased by over the counter nurofen.

If you have been to the Doctor and complained of 'hip' pain you are likely to have been given treatment for that region of the body. To discover if the lower spine, pelvis and hips are involved one needs to have a recent X-ray to see if there is any degeneration in bone tone. Certain physical examinations by a Doctor/Consultant can be done to determine how much might be bony problem and how much is muscular.

Speaking with a qualified physiotherapist about back problems might help as one can be taught correct lifting techniques etc.. Also sourcing a comfortable mattress: as easy as buying comfortable shoes! : is another helpful suggestion.

insect profile image
insect

I can't see an edit button - when my sciatic nerve is sore I can feel it under my buttock at the point where a wallet would sit were I a bloke ;-)

nightdancer profile image
nightdancer in reply to insect

The way this site is set up for all the groups, you can only edit an original question or blog, but we cannot edit on a reply. That is out of the moderator's hands. But, it would be nice to be able to to do that. :)

thedragon profile image
thedragon

Thanks insect....it's definitely pelvic "contractions." It's just the same as when you do pelvic floor exercises. Except it does it by itself . I can try to fight it but have to sort of go with it and squeeeeeeze! that gives relief for about a couple of mins then it happens again. I get it when I relax or if I have to sit ....car cinemas etc so that's why I'm pretty sure it's rls. It's part and parcel of the legs and feet symptoms. It's not sciatica cos I have that as well (poor me!!!!! Ha ha ) but I understand what you are saying. I have a fantastic physio who gave me exercises to do (they really work and they are on here somewhere) but they don't help the pelvic stuff.

tellie5044 profile image
tellie5044 in reply to thedragon

I have exactly what you describe and its RESTLESS GENITALS SYNDROME. I have this along with RESTLESS LEGS and theres no arousal feeling for me either except if my bladder is full as well. You don't HAVE to have arousal feelings without sexual desire for it to be RESTLESS GENITALS SYNDROME, its the same as restless legs just in the pelvis/vagina.

tellie5044 profile image
tellie5044 in reply to tellie5044

I meant you don't have to have arousal feelings with sexual arousal for it to be restless Genitals Syndrome. I have no arousal either or any feeling whatsoever of a sexual nature and I get these pelvic floor contractions all the time even when I'm cooking/sleeping and what not.

tellie5044 profile image
tellie5044 in reply to tellie5044

I also have restless legs syndrome too. I take Gabapentin and it helps both as they are the same disorders just different areas.

thedragon profile image
thedragon in reply to tellie5044

Thankyou tellie ..its good to know someone understands what I mean. .codeine is the only thing that helps me .do you know of any other treatment or is it just as hopeless as general rls. X x

insect profile image
insect

Where do you consider your pelvic area to be? Pelvic floor exercises are 'underneath' and internally from what I remember <rolls eyes> . Spontaneous spasms can be difficult to control. Have you seen a gynaecologist in recent years? Could it womb issues? Adhesions?

What makes your sciatica worse?

Thanks for the notification about editing!

thedragon profile image
thedragon

Oh dear....we have to get even more embarrassingly graphic !!!! Well...imagine being desperate to go to the loo in both ways...and hold it.....that what my symptoms do on their own!

I honestly don't think it's a gynae issue cos I've had these same symptoms since I was about 12.

As for the sciatica it first started when I was pregnant with my second....he's 24 now...nothing seems to make it worse but if I do my excercise regularly..it goes away...if I dont....it comes back!....

tellie5044 profile image
tellie5044 in reply to thedragon

it could be also if not restless genitals syndrome it could be pelvic floor dysfunction. See a pelvic floor physio.

thedragon profile image
thedragon

Oh....I see this thread woke up!!! Tellie...its not a pelvic floor problem. I've had this same, hung since I was 10, I had hoped having babies would help it but 3 later ...no luck !!!. That should be same thing...not hung ..I can't edit!!

Realluthor profile image
Realluthor

Sorry I'm a bit late with this tread, found it on a search. I'm a 44 y old male and got diagnosed with RLS last year. I got presribed Ropinerole and I've had mixed results from this. For me the sensations of RLS symptoms always start in the pelvic area first, then spread to the legs and occasionally the back and arms. I mentioned this to my consultant at the time, and he said he'd never heard of RLS symptoms being felt in that area.

The sensations I feel are hard to pinpoint, but it feels like the bladder, genital area and across my lower abdomen. Then if I don't move my position in bed, it spreads to the legs and I have to tense my thigh muscles to the point of exhaustion to get a minutes relief. The Ropinerole helps a lot but I wake with more symptoms at about 4am. Anyway, that's my two-penneth, just wanted to confirm this always starts in the pelvic / genital region. Good luck to you all in finding relief.

thedragon profile image
thedragon in reply to Realluthor

Thankyou for your info..so pleased to hear others understand x

Yuhgtr148 profile image
Yuhgtr148

I know this train is old but I’m grasping at straws myself. I have the exact same issue and it also extends into my lower back. What did you find helped you to ease it, I’m absolutely desperate at this stage.

thedragon profile image
thedragon in reply to Yuhgtr148

Co codamol is the only thing I use. It usually works. Good luck x

Hi Dragon, are you still on the platform? I am just on this platform, and you seem the only one with the same place and history of RLS, mipi

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