Restless Genital Syndrome -- no, seriously

[usha93]

This was a new one on me. I don't know if it's a case where the whole world has already heard of this and I'm just late to the party, but -- I mean, Restless Genital Syndrome??? Seriously?!?

I admit my first reaction was -- Orgasm as a form of neuropathy? Jeeze, my neuropathy is always hideously painful. How'd these chicks manage to luck out

Comments

[usha93]

Have you always tended to be slim, or has M.S. brought that bit of fun to your world, too? Before my dx I was pretty average, then gained a ton of weight my first year post-dx, with a combo of mega-steroid "treatment" and enforced inactivity. I had to work pretty hard to lose it, and getting in shape took a while. Then, not long after the downgrade from RRMS to Secondary Progressive, I developed what a whole team of docs eventually decided was a "Wasting Syndrome," which can apparently crop up with any chronic disease, although it's more common with conditions such as cancer and HIV infection. I've met a few other ladies with M.S. who had this too, and my own experience seems to indicate it's more common with PP and SPMS; I've never met or heard of anyone RR having this problem

Wasting Syndrome

[usha93]

Once they'd decided on that for a dx, they basically force-fed me. I was taking in 5000 calories per day in a combo of food and high fat/high protein shakes, and it was disgusting! :/ Early on, trying to get into the swing of taking in that many calories, I threw up a few times, because my stomach was literally stretched to the limit, and it was terribly uncomfortable. :/ Because I live in CA, a medical MJ state, and already used medpot for spasticity and spasm control, I got into the habit of smoking a little after everything I ate (or drank with a thicker consistency).

It was rough, it felt like all I ever did was eat and smoke pot, and not in a fun way. One funny spot was realizing that, for most folks, getting the munchies was a down side to medical cannabis, but for me at the time it was an added benefit! It was rough on the bank account too, because those caloric shakes are expen$ive, as are avocados (healthy high fat content) and marijuana

[sophiaserpentia]

There's a theory that calorie absorption from food can vary much more widely from one person to the next than previously believed. Before, doctors would just assume that someone like me is lying: I will not lose weight unless I eat less than 1800 calories/day, even though the chart says I "must" be eating twice that to maintain the weight I'm at. And at the same time they would assume someone thin who eats 5000 cal/day must be exaggerating. Well, okay, most doctors would probably still think I'm lying, they're incredibly resistant to change their views about weight even in the face of scientific evidence.

And RGS sounds at first like something that might not be too awful, but if it's driving people to the point of suicidal despair it's not a good thing. Then again, for every woman who says to her doctor, "Make this stop please," I wonder how many women there are who have this condition but do not suffer thereby.

[usha93]

I'd definitely buy that calorie absorption varies from individual to individual, but the 5K-per-day thing was during my early experiences with the Wasting Syndrome I ended up being jacketed with. I had every test known to humanity, some of them twice, and had a whole "medical team" just for me -- my neurologist and gynecologist, an oncologist, and an internist. Gallons of blood to test, MRIs, sonograms. Once cancer was ruled out, I was sure it would be diabetes, but nope. That was one of the re-tests, because it seemed to fit. Eventually the docs decided it was a Wasting Syndrome, more common with cancer and HIV-infected patients, but sometimes seen with Progressive M.S. as well

[lori_holder]

A friend of mine is just scrawny thin by nature and says people give her a lot of critical looks. She thinks people assume she is anorexic. I think I'd still switch with her - I've gained 35 pounds on 1700 calories or less per day + exercise until my body hurts. I never have any energy - it's like my bod sees food and stores it, quick, before something comes and uses it up. Prolly a thyroid issue, b/c those numbers have been moving about - eventually I hope it will get straightened

[usha93]

Oh, UGH I hate those arch-cramps. I've had that rock-hard-rope thing, and also active foot spasms, where my foot bends and won't un-bend -- like heel and toe are trying to touch. Brings tears to my eyes, and very bad words to my lips! :o The first few times it happened were after I'd been more active than usual, lots of time on my feet, so I thought activity was a trigger; but then I had it happen a few more times when activity level was not a consideration, so... at this point I'm not sure if there is a trigger, or (if so) what it is.

I'd definitely bring it up at the appt., though I'm not sure there are any effective treatments, other than garden-variety anti-spazz meds (however effective they are for you personally). Good luck, and let me know if you find out any further, possibly helpful, info, 'cuz foot problems slow me down too. ;->

[usha93]

Do you know LJ user penny_ann? I know she's had a truckload of problems with her knees (she also has M.S.), culminating in knee replacement surgery. :o Not sure if your knee problems are the same or similar, but she might know more about causes and non-surgical P.T. If you're not already LJ Friends, I'm sure she'd be happy to talk with you about it if you dropped her a line -- Penny is good folks. :-)

Re: Not just neuropathy

[usha93]

Varices, hmm -- it's varicose veins in the pelvic region, right? They do operations on people's leg varices, no clue if anything similar would be on the agenda for pelvic varices. Yikes! :o

I've got a sometimes overactive bladder due to the M.S. thing, and have noticed times when I've gotta pee a little bit, yeah, the orgasm is actually heightened. For me, it doesn't work the same way when I've REALLY GOTTA GO, but just a little bit, you betcha! Kind of like how it was during pregnancy, with the bladder pressing against the pelvic area.

ROTFL, the Three Ps of Female Orgasmic Enhancement -- Period, Pregnancy, and Piss -- ? We're total fetish queens here, aren't we? :D