[Starznight]

Still fairly new here, but it's something that driving me a bit nuts and my doc just kind of looks at me like 'are you serious... We're discussing your debilitating pain in switching laundry and you're thinking about THAT?!!' ... Well come on, I'm a 34 year old married woman, it shouldn't be too shocking. But how to word this without sounding rude and crude.... Fitting the pieces together isn't an issue other than trying to find a comfortable position, but obtaining satisfaction.... Well that doesn't always make it worth it... When it's been a few months it can be but... Even then.... Ugh... I'm really terrible at explaining this but long and short afterwards it feels like I'm being strung out on a rack with pins placed in every muscle twisting them tight while the joints are separating, it hurts to breathe, is almost impossible to breathe, I can't voluntarily move but get jerked all over the bed like I'm having a grand maul seizure except I'm wide awake and fully conscious for every excruciating jerk and jump of the muscles while my poor husband looks on in abject horror and probably not more than a little male pride since there's no way to fake it. I am taking baclofen three times a day and zanaflex at bedtime and this has been going on for about five years now. Before that my husband and I were 'healthy' with a dash of spice, now it's like I have to get almost comotosed from alcohol to help, which sure works for him on the occasions that I decide to kill my liver, but doesn't really help me out much since the memory is a bit foggy. I'm hoping that my female neuro might be a bit more sympathetic to my plight, than my male pain mgmt doctor who thinks only guys care about the bedroom, but also since she's a devote baptist she might just condemn me to burn for eternity for even thinking about carnal pleasures and condemn my symptoms as retribution from the gods. Am I a terrible person for even thinking about it, some kind of deviant, since I can't even go food shopping for the pain and tiredness? On the one hand I can somewhat agree with the pain mgmt doc that there are more pressing matters to attend to, and I would be inclined most days to agree, but its not just denying myself, but my husband as well, I'm ready to hire a prostitute for him... It's not like he's saying 'if you can't...' If anything he's sometimes too supportive in that regard just not real good at hiding his desire, nice to know that gimped up as I am he can still feel that towards me, but sometimes it feels like eating ice cream in front of a starving child from TV ads. I'm really sorry for asking, and have consider deleting this whole thing several times over, not really from embarrassment but rather again is it something I should even be thinking about in the grand scheme? Nuns and priest can survive without, it's not like its life threatening or a daily necessity, it's not like my marriage is falling apart over it, or even the worse aspect of things my hubby has to put up with, but does having health problems mean turning your mind into that of a monk, your bed into an altar of sleep, and fitting your husband for his priest robes? I get that I'm in pain, constantly, I get that intimacy (when enjoyed be me) sky-rockets that pain to levels which cannot be healthy, and as such I probably shouldn't even give a thought to any bedroom activity but sleep. But darn it, I do! And I'm not ashamed, even if it does make a sociopathic deviant, but if anyone might know what I'm talking about and if they have found any solution better than alcohol poisoning every couple of months, I could really use the help.

[Kitty]

Starz

I'm probably not the best one to give advice in this arena because my hubby passed away in 2001 (I was 41) and I have been single since (I'm only 53 now). Was also dx with MS several years after his passing. After reading your post I'm almost glad I don't have to deal with that part of this dilemma.

You (and your DH) sound like you've accepted the various unpleasant effects of having a chronic illness. I would probably be feeling the same as you are.....guilty for not being able to be 100% there and sad for viewing it as a unpleasant chore.

There are lots of married women here that I'm sure will respond to your post. The weekend is usually quieter and slower on the forums so don't get discouraged if there aren't many posts just yet. They'll be along shortly. I just wanted you to know that your post was fine.....nothing to be embarrassed about.

Sounds like you've got a wonderful hubby, too.

[Jim091866]

Please don't think that your post is out of norm or should not be talked about. It is a fact of life. Sex is a healthy part of the relationship between a husband and a wife. I am 47 y/o and have had Parkinson's for 17 yrs. Just checking out the other forums this morning. My girlfriend and future wife is 51. She was a virgin when we met. YES, I do know that for a fact. Whenever I get overwhelmed or doubtful about my ability to keep her should I become more incapacitated she reassures me that our relationship is not about sex. I know that she loves me. When we really get to wanting to do the deed I have to get a viagra pill, costs about 40 bucks so that's the price we pay to play. The rest of the time I simply give her lots of pleasure, attention, hugs and kisses. Works for us. I am sorry that I cannot offer you much help with your problem.
On another note have you seen the posting about stem cell transplant for MS. Done at Northwestern in Chicago, IL? If there is any way to get in there GO!!!!!
Good luck and God Bless.

https://www.facebook.com/heathernicoleHSCT?fref=nf

[tkrik]

First of all, I had a hard time reading your post. For some of us MSers, it's hard to read things when there are no breaks in the lines. If I missed something, I'm sorry.

Like, Kelly, I'm not much help in that department as I left my long term bf a couple of years ago.

Don't be embarrassed by your post. Intimacy is an important part of a relationship as Jim mentioned. MS can effect that as well whether it be what you have experienced or something else such as lack of sensation. As a suggestion, you may want to talk to your gyn about this issue as well. She/he may have some suggestions for you as well. If the nerves can effect our bowel and bladder, it can certainly affect other areas in the pelvic region. I do know of a man who everytime he pushes the brakes in the car he loses bladder control. Things just get so mixed up with us and we have plenty of misfires.

Also, talk to your primary about this issue. The trouble you're having with breathing does warrant a call to him as it may not necessarily be MS related.

Good luck and let us know how you are doing.

[Starznight]

Sorry for forgetting breaks

Dryness isn't an issue, the act isn't an issue either, it's only an issue if I have an orgasm.

That's when the body's spasms and nerves kick into overload. If I don't reach climax it's fine, but not that great for me or my husband but at least I don't have as many issues. But that gets old really quick, and is difficult when I want to enjoy myself but am stuck distracting myself from a wonderful aspect of married life with a great partner.

And is the hardest part to explain to the doctor. It's like, because I'm injured and female I should just be able to just fake it, women aren't suppose to feel pleasure I guess, and even if we do it shouldn't be an expectation. And he'd rather focus on getting me through the grocery store or doing laundry and would rather ignore whether I can have pleasurable sex with my husband. Of the list of issues I have, I would think sex would be the easiest one to fix and likely greatly improve my mood.

And thank you everyone for responding, your reply at least help me realize regardless how the doctor might respond to my complaints, I'm not some crazy person with an unnatural appetite. Though I might have an uphill battle getting the doctors to realize that

[KittyLady]

Have to agree, please space out your paragraphs, wow, very hard to read! Now as to your dilemma, you are not alone. I unfortunately am no longer in my wonderful 30's, but in my 40's now. Going on mid 40's actually.

DH is going on mid 50's so intimacy issues for us is not an issue do to dh's age more than anything, and now do to my MS, its not a big deal to me either. When it was a big deal, yes it hurt I put on a brave face and acted my way thru it so he wouldn't know I was hurting till after.

No need for him to know or for both of us to be disappointed. I get where your coming from. You really need to talk with a doc that will listen and help you. 34 is way to young call it quits on this. With your supportive dh, you'll do great!

[msarkie]

OK, feel free to ask me anything you want! I may not be of any help, but I won't get embarrassed or think ill of you.

First off, nobody should have to go thru what you're describing, and some dr somewhere should be able to help! A healthy sex life is VERY important to a marriage, even if it's just mutually agreed upon affection. Your female neuro (and I speak as a Baptist myself!) will not judge you for wanting to be able to enjoy intimacy with your husband. I have generally found female drs much more sympathetic to "female" issues - as I told my DH, I don't care how good of an OB/GYN he is, a male dr can NEVER say, "I know exactly how you feel!"

So, from what I'm reading, your orgasm sets off intense full-body muscle spasms? Is it like muscle cramps? Or more like nerve pain? Have you tried Valium? Since you mention that alcohol seems to help, the valium might do some good. It works as a muscle relaxer. Is there any other activity that sets off the same sort of reaction?

If your neuro is not enough help, you might consider a urologist, OB/GYN, or even a psychiatrist. I'm not suggesting you're crazy -psychiatrists know a lot about the nervous system and how different drugs affect it. Mine has been a Godsend.

Don't give up! When it all comes down to what's important in life, laundry and grocery shopping are way down on the priority list from connecting with your husband.

Feel free to PM me if you want!

[Starznight]

You guys are amazing. I just need to say that.

But in answer to your question it's sort of both cramps and spasms. Charlie horses with involuntary jerks. Now my husband says I do a similar thing when sleeping, from what he's witnessed it's pretty much as soon as I hit REM sleep.

And just before REM and as leaving it, I'll go into what he coins vibrate mode. My pain mgmt doc had a neuro in office for a bit who suggest clozepan(sp?) and at first it helped, I simply vibrated through the night.

Then they had to up the doses, again, and again, until I said no more. It doesn't wake me up, I have no clue that I'm doing it, haven't fallen out of bed, and according to DH I had been doing it for as long as he's known me, which was when I was 14 and sleeping on his couch to watch his kids in the am.

Long story on how we ended up now married

The only difference between reaction after sex and when I'm sleeping is I don't know if it's painful when I'm asleep, and I don't appear to have any difficulty breathing according to DH. As to the painful while sleeping... I once slept through a roommate twice my size jumping on my under filled waterbed while I was sleeping and dosing me with water.

She called my mother whose voice roused me from my sleep, that's when I noticed my nose burning from snorting the water, and bruising to my back, shoulders and a knot on my head, needless to say we had a nice long chat about safe ways to waken an unconscious person, water to the face not being one of them

So pain doesn't really waken me, coughing doesn't, noise doesn't (aside from mother's voice) unless I expect it. If I know I have to get up for an alarm, it goes off and I wake up... If I don't, DH or sometimes my uncle comes into the room to shut it off when they get tired of listening to it. Both of them steer clear of the bed for their own safety though as I'm usually pulling a Linda Blair thrashing around the bed like a demon.

But if I'm on vibrate, they both know they can wake me up safely. But that seems to be the only two related activities. Also if I drink a lot of alcohol, not only do I not have problems after orgasming, but I also don't spaz out while sleeping. Which more than Linda Blair, my husband likens it to someone getting hit by 220, death by electrocution style.

I will certainly talk to the neuro about it though, since pain mgmt hit a dead end, and failing that I might try a psychiatrist. I dunno though, cause while in this regard I may not be crazy, I know I'm ready for the nut house on soooo many other levels.

Seriously though, I do appreciate all the help, you can't even begin to imagine, or you might know all too well. But these past five years since this has been going on has really been perhaps one of the most depressing things I've faced, more so because the docs weren't taking it 'seriously' I guess is a term for it.

I mean I would love to run again, go hiking, playing my clarinet, scrub my kitchen from top to bottom (dear god how it needs it too) but I can view most of that pragmatically and I times I do feel a bit ridiculous that sex is the deal breaker. Sure you can take my pride, my freedom, my independence but give me orgasm or give me death....

Sorry it's late here, and the zanaflex is giving me the giggles tonight.

More inclined to go to psychiatrist than ob just because I had bad experience with both female and male obs, was young, had my first insurance figured be healthy... Go to the gyno, never too early... Yeast infection, menstral cramps, terrible PMS, yeast infection, yeast infection, bladder infection, another yeast infection....later, said forget this, ate plenty of yogurt, drank cranberry juice and finished of the antibiotics never to darken an ob/gyn's door again. PMS gone, cramps gone, regular periods back like clockwork never had another yeast infection or bladder infection again. So longs as they remain unbroken, I'm not going to have them broken, some things were not meant to be placed in the human body... Their tools seem to be one of them.

[msarkie]

OK, your symptoms intrigued me so I did a little looking around. Check into "alcohol-responsive myoclonic dystonia" and see if that fits your symptoms. It's kind of hard to find info on, but it is out there!

[Starznight]

Will have to research it quite a bit more, but a cursory perusal of the symptoms doesn't seem far off. Including increase risk of OCD, which my husband claims is really bad, I say it's called being neat and organized. But thanks so much for looking into it, amazing how ready one is to blame everything on a single disorder, bad habit picked up by the doctors no doubt.