Restless legs and restless genitals :(

For everything and anything else not covered in the other RLS sections.
Post Reply
icouldeatthemoon
Posts: 1
Joined: Wed Nov 26, 2014 1:26 pm

Restless legs and restless genitals :(

Post by icouldeatthemoon »

Does anyone else have this problem? Because I am miserable.

I have had restless genitals since I was a kid, even before I remember having restless legs. I never wanted to wear pants as a kid, and it was legit. Wearing pants was so uncomfortable for me, even to this day. Everybody laughs and my parents still show people pictures of me falling asleep with my pants down, but it wasn't something I could help. In first grade, I was always sticking my hand down my pants to adjust things because of discomfort. People thought I was really really weird and I didn't have a lot of friends until I figured out that what I was doing wasn't normal. Then I just tried to hide it.

It's like a crawling sensation all over my labia and perineum. I've always hated going to see movies and I hated sitting in class because I move constantly. A small portion of the movement is for my restless legs, but most of it is my RGS.

Does anyone else suffer from this? I feel like I am losing my mind and I don't have health insurance so I can't afford to go to the doctor.

Polar Bear
Moderator
Posts: 8797
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Restless legs and restless genitals :(

Post by Polar Bear »

How awful for you that the symtoms have affected you in this way.
Some folks reckon that supplements can help, magnesium and iron, but this is only likely if you are already lacking in that particular mineral.
However, with regard to iron its probably best to have a blood test done and in particular to have your ferritin serum level checked.
Is there a cycle to your symptoms, worse at night the way traditional WED/RLS is expected to occur.
Does walking/movement relieve your leg symptoms and does it in any way help with your RGS.

Have you ever taken anything for relief, that helped.
Also avoid caffiene, alcohol, antihistamines, ,......
Anti depressants can have a negative effect on symptoms but may be necessary and should be 'worked around'.

Go to the Just Joined forum viewtopic.php?f=2&t=1068 you will find a lot of good information.
Please take time to read this and the links. Perhaps you have already done so.

Before I took medication I found that plunging my legs into a bucket of icy water for about 15 minutes would give me relief for about an hour.
Have you tried using a cold water shower head on the area..... Might be easier than sitting in a few inches of cold water.
Others find that a really hot water shower will help.

I am so sorry that your family don't understand this condition, and that indeed it was a subject of fun.
So many cannot understand WED/RLS.

I live outside of the USA and am unaware of how people with a condition cope without health insurance, I hope someone else can provide some information.
It is difficult enough to find a good doctor to help with the treatment of traditional WED/RLS in the legs.

I do feel that you need the help of a doctor who is experienced in the treatment of WED/RLS.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Restless legs and restless genitals :(

Post by ViewsAskew »

That sensation must be incredibly difficult to cope with - and as a child? I feel for you.

There is info in the medical literature about this. We've had a few members over the years with mild genital symptoms. Not sure I remember anyone with strong one, as you have.

Corrie knows a bit about this, I think. Maybe she'll see your post and answer. I do know that we have posted medical research articles here (or links to them) about it....finding them may be as easy as search for the word genitals, or could be harder if they are linked. I can't remember the name of it...and my drugs are kicking in so I am about to fall asleep...

Poke around - I know there is info here somewhere.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Restless legs and restless genitals :(

Post by badnights »

There is a syndrome called PGAD - persistent genital arousal disorder - aka RGS. It's an arousal, but unwanted, unaccompanied by desire, and therefore extremely unpleasant. There is a website that seems to be very good, http://www.psas.nl/en/.

There is a wonderfully sensitive news article from The Guardian here http://www.theguardian.com/lifeandstyle ... -pgad-pain

I have had the symptoms of WED in my genitals, and physically they are pretty much as you describe. However, I didn't ever feel that until I was in my 30's, whereas I have had WED in my legs since I was a little kid. Also, the gential restlessness comes and goes, and has been gone for a couple of years now. There is someone else on the board who suffers from this as well. It's hard to talk about, kudos to you for bringing it up.

If you don't mind my asking, why don't you have health insurance? II Thought Obama had changed things in the USA so that everyone had to (and could) have insurance? ('m in Canada, where everyone has insurance.)

In a paper on PGAD by some Dutch researchers, published in 2008. they noted that 12 of their 18 patients had WED/RLS as well as PGAD; in other words, it's a separate disorder from WED/RLS, you can have PGAD without WED, but they're associated and may have common origins.

Co-existing problems: PGAD patients have higher levels of WED/RLS, are more likely to have interstitial bladder cysts & overactive bladder, according to one study, are more likely to have cysts on the sacral spine, and more commonly have varicose veins in the pelvis. No one is sure if the varicose veins or the cysts actually cause the PGAD somehow.

Causes:
- in one case, PGAD was resolved by removing a small mass within the clitoris that was pressing on a nerve.
- I think there is some evidence that peripheral neuropathies cause PGAD in some cases (paper by Facell and others, J Sex Med 2013;10(2):439-450).
- one case of eating too much soy products! phytoestrogens hypothesized to be the cause. Symptoms stopped when she changed her diet.

Various medications have been tried for PGAD. Two of the women in the Dutch study got hormone replacement therapy, which helped one, but neither wanted to continue because they were afraid of side effects. Most of the Dutch patients were given clonazepam/Klonopin, which partly or completely relieved the symptoms in 13 of the 16 who tried it. Clonazepam is a benzodiazepene sleeping pill that used to be the only recommended treatment for WED, but although it often helps sleep, it is less commonly reported to actually help WED symptoms. Three of the PGAD patients were given oxazepam, a benzodiazepene-like medication that is said to have some anti-convulsant effects; and all three reported improvement.

Nowadays, three classes of medication are recommended for WED treatment: dopaminergic medications, of which three have been approved by the US government for treatment of WED, a specific class of anti-convulsants, of which one has been approved; and opioids, of which none are officially approved but almost every case of refractory WED/RLS that is being successfully treated makes use of one. So I wonder, would these also work for PGAD?

Dopamine medications: Three patients in the Dutch study were given pramipexole (a dopamine agonist). All three had bad side effects and no relief of symptoms.
-In a separate case study, a woman who had suffered from PGAD for years started using a stop-smoking aid called varenicline tartrate (an antidopaminergic medication that stimulates a small amount of dopamine release while blocking a large amount at nicotine receptors); and this, as long as she took it, relieved her PGAD (http://www.psas.nl/artikelen/Irwin%20Goldstein.pdf - This link is from that website above. It is also mentioned in the 2013 review by Facelle and others.
- I also came across a Letter to the Editor in Sleep Medicine that describes a 39 yr old with persistent vulvodynia (discomfort, tingling and irritation in the genitals) as well as classic WED/RLS in her legs. Her symptoms went away after taking cabergoline, a dopamine agonist that is no longer used for WED because of the risk of fibrosis in the heart and other organs.)

Anti-convulsants: The news article I linked to above refers to a patient receiving gabapentin (an anti-convulsant) for PGAD, with only partial relief. There is an improved form of gabapentin now FDA-approved for WED treatment, known as gabapentin encarbil or trade name Horizant. As far as I know, no one has tried it for PGAD.
- I also found a 2013 case study of a woman who acheived relief with pregabalin/Lyrica, which is also used for WED

Opioids: In the Dutch study, three patients were given Tramadol (technically not an opioid, but it has the same actions). All three of these patients found relief.
- the woman who was relieved of PGAD by the stop-smoking aid (above, under Dopamine) had previously tried morphine, without success

Other: Botox was used - I did not read the results; it's linked to on the PGAD website
- Duloxetine, an SNRI anti-depressant, provided relief to one person (2013 http://www.ncbi.nlm.nih.gov/pubmed/22024021)

Physical treatment:Three people at least have found relief with a TENS (a small machine that generates electrical current, costs $50 to $200). One places the electrodes on her spine.
- two others successfully used a TENS about 2 cm inline of the points of the bones you sit on ("in the pudendal dermatomes, 2 cm medial of the ischial tuberosities"). This also is from the Facelle and others 2013 paper.

In WED, there are triggers that make the condition worse. Some of these are specific to the individual - tight clothing, being cold - whereas some are more universal, like coffee. You undoubtedly know your main physical triggers already (wearing pants!) but there may be chemical triggers too. For example, SSRI anti-depressants can make both WED and PGAD worse (although there are reports that . Anti-histamines (the first-generation ones, at lesat) make WED much worse - do you take anti-histamines? Do you drink coffee?

The take-home points are that no one really knows what causes it, but there are probably different causes for different groups of people; and that people have been cured of it (by removal of a clitoral mass) or successfully treated (by a stop-smoking aid, by risperodone, by Tramadol, by TENS, by pelvic floor massage).

The website I linked to above seems to be really good! It summarizes and provide scienfific information. It also provides links to support groups, where I imagine you will find people who have the exact same issues, and it will be a huge relief, and you'll get great ideas for treatment, and for how to approach physicians.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

cornelia

Re: Restless legs and restless genitals :(

Post by cornelia »

Beth already has said all the good things. I have suffered of WED in the genital area as part of RLS. But I think that is different fom having RLS in the genital area as a different disorder and not as a result from RLS. I think I read that in that case it is seen as a form of neuropathy. But yes, treatment will help so there should be light at the end of the tunnel. I get it that is sooo hard to live with this, not being able to talk about it with others I guess and I assume you must feel pretty lonely.

Corrie

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Restless legs and restless genitals :(

Post by ViewsAskew »

Beth and Corrie - thank you! I knew that there was info here, but couldn't remember what it was called.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Kupkee
Posts: 31
Joined: Fri Dec 19, 2014 10:13 am

Re: Restless legs and restless genitals :(

Post by Kupkee »

I feel symptoms in my genitals too. It coincides with my legs. I feel a need to squeeze my boys for relief. It was relieved by mirapex but now I'm tapering off so its worst along with legs. Glad I read this I was getting paranoid that I might have another issue.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Restless legs and restless genitals :(

Post by badnights »

Weird, isn't it? But it's mentioned in the more comprehensive summaries of WED - like the little blue book by Lee, Buchfuhrer, Allen and Hening. "Patients with severe RLS frequently experience their RLS symptoms on other parts of the body beside [sic] the legs. Most commonly, symptoms are felt in the arms. Less commonly, the hips, trunk, shoulders, genitals, or anal region may be involved. The patient will describe the sensation in the extended area as being the same or very similar to the symptoms in their legs, and it will be generally characterized by the same akathisia-like features..." (p.23).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply