@jat721

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jat721

Question about sex and heat!

I had a relapse a month ago where I got a tingly, electrical feeling in my arms and lost most use of my left hand. Since then it has gone back to normal except for a slight tingle in the very tips of my fingers. I also started getting the lhermittes syndrome during my relapse, which has not gone away. I notice that it's worse when I'm hot, to the point where I can't move my neck at all or I get tingles all the way down to my toes. But now I'm freaked because last week my husband and I were having sex and I completely went all out electrical current through my arms and legs, my left foot cramped up and was stuck in a pointing position and my left hand cramped and I couldn't move it. Also, my chest/shoulders got tight and it was difficult to breathe normally. It took me a good 30 minutes (after applying a cooling neck wrap) to be able to get up out of bed and be able to hobble around the house. My lhermittes also worsened and I couldn't move my neck without being electricuted head to toe. After a couple hours I was able to function normally. I figured it was due to the heat because I had just gotten off work and the house was warm (my husband likes it warm when he's home alone) and I was warm from just getting off work. Since it went away after cooling off, I assumed it was the heat. So the rest of the week we made sure it was extra cool in the house and the ceiling fan was on. I thought we had it figured out and haven't been having any issues. Well, yesterday it happened again!!! and we had made the same precautions. I don't want to be scared of having sex! Does anyone else have this issue and what do you do to prevent it?!? Help!!!

lightningduck

@lightningduck

I don't know if this helps from a mental point of view... For me, Sex and MS is one of those where I can do it but it takes a little more awareness and effort. Other than what <a href='https://shift.ms/community/people/heatherl/' rel='nofollow'>@heatherl</a> said about core temperature, sometimes my symptoms are worse than others. Especially my lhermitte's, which can really make thigs awkward and difficult. So I just have to take it as it is every time. Some positions are more difficult or more uncomfortable because of hip soreness, etc... What this all comes down to is that I still do it and we still enjoy it but in my mind I'm making minor adjustments in action and position and reaction. Nothing overt and nothing vocal, just little things. For example, if my hips are sore and that's making it difficult to get in the right position and that's causing my some anxiety which is a mental distraction that makes other things not as workable, I'll either a) suggest a different position which is less stressful or b) more foreplay to settle my mind and enjoy the sexuality which reduces the distraction and makes it easier to 'perform' even with some soreness. I don't usually tell my wife I'm making those kinds of accommodations, I just do it for what makes sense for my situation and our mutual pleasure. Now granted, in our relationship, I'm usually more the guide so it's easier for me to direct things in ways I need that will still be enjoyable for both of us. But I'm finding things go through ups and downs....sometimes are worse than others. Sometimes the physical effort of sex raises my temperature or just gets things emotional or mentally heightened enough that I feel the effects in my symptoms...sometimes not. I try very hard not to second guess what will happen until I get there and then deal with it if I need to *BUT* and this I think is key, it took time and understanding from my wife and practice before I learned what I could and could not do (because I've had one *very bad* sexual experience and a few not so great). One thing we did was picked a night and said "OK, we have a few hours, let's take our time" and we did a mutual massage, taking turns with the massage oil, full body contact, etc... it was a little bit about us but for me it was a lot about finding what would work and not, what my nervous system and symptoms could deal with and not, what I could do physically and mentally and what limits I could reach. A discovery of my new MS body and it's relationship to my own sexual body. We went in with no pressure, no expectations and no rush...and came out with both a a great experience as well as a great understanding of myself Just like anything else with MS, you have to rediscover where you are; I've had to learn to walk a little different and do martial arts a little different and exercise a bit different, etc... Sex is the same way except it involves someone else too who comes in with their own needs and desires so it can be a bit more sensitive to work with your partner and say "ok, we need to discover my new limits and capabilities"

scotkiwi

@scotkiwi

Staying cool is vitally important for me. Be it exercise or during Noctural-shenanigans with a second bedfellow participant! My vision goes to pot (in my right eye in particular) when my core heats up - so I need to stay cool to fully partake of the shenanigans! (apologies for crass-ness!)

scotkiwi

@scotkiwi

Agree fully <a href='https://shift.ms/community/people/lightningduck/' rel='nofollow'>@lightningduck</a>

pottypete

@pottypete

Lightningduck is right, you have to take time and re-discover what you are capable of. That can be fun. It's like being with a new partner. I had two years with my ex where I couldn't orgasm because of lack of sensation. Things change though. I'm over the loss of sensation, but have no-one to do it with, arrrrrrrrrrrrrrgh! L'hermittes is a bugger, but it'll change, yet again, eventually. Forget what it used to be like and enjoy finding out new things, new ways of achieving the ultimate joy. I've been with a couple of partners since my divorce and it's been fun finding out new ways of achieving orgasm, without pain or suffering. I'm just a little jealous that I have no-one now, haha. I'll be back in the game soon though.

pottypete

@pottypete

Oh yeah, a cold bedroom is a must. Windows open, who cares who hears. Enjoy!

lloyd

@lloyd

What is sex its been so long I forgot what it feels like.

lightningduck

@lightningduck

yeah, sorry <a href='https://shift.ms/community/people/lloyd/' rel='nofollow'>@lloyd</a> if this is an uncomfortable subject....

lloyd

@lloyd

No its ok I just haven't. Been with a woman in over two years and I am married, but faking according to my wife.

lightningduck

@lightningduck

See, I just don't get that. If you have a dx from the doctor that says you have MS and MS has a known set of potential symptoms and effects, how can your very loved ones and friends turn around and say you are 'faking it'? I don't understand some people

jat721

@jat721

Thanks everyone... I think. I'm definatelly going to be trying some new ideas for staying cool. It's difficult cause I live in Georgia, and it's been 95 and humid since March... I'm tired of hibernating. I would love to be able to open the windows! Cold showers are always nice, although our "cold" water has been coming out pretty warm!! I can't wait to move to the west coast and have better weather. Till then, I'll just be toughing it out each summer. We'll just have to try a bunch of stuff out, cause this is one area I'm not willing to compromise on! One nice thing though is that my husband now understands just how much heat is affecting me and is more understanding every time I turn up the a/c, rather than stressing about the bill every time.

lightningduck

@lightningduck

<a href='https://shift.ms/community/people/jat721/' rel='nofollow'>@jat721</a> that's great to hear; that you are moving to a better climate and that your husband is understanding about the situation Don't get discouraged, keep trying and working with it until you know what works for both of you

lloyd

@lloyd

<a href='https://shift.ms/community/people/jat721/' rel='nofollow'>@jat721</a> I live in Lexington SC. and moved here from NJ 5 years ago and I don't ever remember sonmuch humidity in the air as this year, unless I'm just more sensitive to it. But yes I know exactly what you mean about hibernating,I do have a cooling vest and that helps a lot but today I went out for a while and felt like I couldn't breath like the air was so thick.

jat721

@jat721

<a href='https://shift.ms/community/people/lloyd/' rel='nofollow'>@lloyd</a> We've been here for 4 1/2 yrs. The first summer was bad, although it could have been because we had never experienced the humidity before. This year is relentless, there is just no break! I make cooling neck wraps, which will allow me to go out for about 30 min. but it doesn't combat the humidity's suffocation!!

lightningduck

@lightningduck

Lived in Warner Robbins for three years as a kid....yeah, that's nasty Was fortunate that Is was planning to move to Phoenix for work but after the DX, my boss let me stay in Colorado Springs and work remote

lightningduck

@lightningduck

<a href='https://shift.ms/community/people/jat721/' rel='nofollow'>@jat721</a> - yeah, i know. I've had a few sessions with my wife that have been rough the last few days. Nothing physically wrong with me but just...the mental and emotional overload of feeling numbness and tingling all over my body as a distraction and anxiety. I talked brave above, but sometimes it just overwhelms you