Forum

Sexual wreck

And not bragging (unfortunately!)

Long background story as short as poss.

When I got my Dx (CIS with l’hermittes syndrome) I was put on Carbamazapine. After a couple of years when this really wasn’t working, it was changed to Gabapentin.

The Gabapentin caused me many major problems. It was changing everything (bad moods and real black moods, nastiness- road rage, wanting to seriously hurt people (I’m over 50!), loss of sex drive etc.) This was very slow at first due to being on a low dose. This is why no-one put the jigsaw puzzle of bad behaviour and all the other symptoms together.

It only became apparent when the dosage was increased as it wasn’t deadening the L’hermittes. Then the changes became very apparent as they were getting worse by the hour, I was just looking to start fights and not wanting nookie.

I’d always been quite highly sexed and active since about the time I joined up. Had bad moods, but never wanting to hurt people except under the stress towards the end of my marriage due to her alcoholism (I didn’t have CIS then.) Counselling and Al-Anon sorted me out with that and many other problems I had caused myself. That and as a single dad to disabled kiddies, well you’ve got to grow up and show a good example. Couldn’t afford trouble with the police/ courts; the SS would have had a field day with a single dad!

L’hermittes has caused the problem of numbness/ loss of feeling in my old boy. Since coming down with CIS my lady has had to reassure me that it isn’t going soft during; that she’s enjoying herself (I know she wouldn’t act) and that everything’s fine. We were still reasonably active quite a few times a week (or a day if my luck was in.)

Quite suddenly over the space of a few months on Gabapentin, I had lost my sex drive completely, losing the erection or feeling like it had, (same feelings as I originally had on Carbamazapine with numbness) and the will to even try. When we have made love, she says it’s still fine.

Yes, I believe her.

But now I’m too scared to even try and I do believe it’s pushing her away as she thinks I no longer love her/ want her. Couldn’t be further from the truth.

Really can’t work out for myself how to get over the cowardice.

Worried about letting her down, failing part way through and causing myself even bigger mental problems/ worries.

Catch 22 here. If I try and fail, I cause major problems. If I don’t try, i’m still causing major problems and possibly buggeringup my relationship

I do want to spend the rest of my life with her, even though I dread to think about her looking after me and wasting her life. She keeps telling me that’s her choice not mine (normal bloke- doesn’t listen properly)

My MS nurse has told me the same. She’s also impressed I can be open and honest. She’s also told me to listen to my responsible adult.

Thankfully she also changed the tablets to Pregabalin a few months ago (maybe 6 -8). Moods have really mellowed but…

Trouble is I have built a huge brick wall in my mind and I really don’t know how the f to knock it down.

So I thought I’d chuck the problem out there and see what all you good people can suggest.

Sorry this has been long winded and probably makes for confusing reading.

Many thanks for trying to decipher it

Dewi

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Hi

Are you really a wreck - of any kind? Surely if your life together is important, then, how things are on a daily basis, is more important than what the future might bring.

As for the wall if you sit down with your partner and ask her to help you take it down, even if it is only one brick per day. Sensation may return, or not, but thinking of the pleasure you can give, no matter in what way, may prove to be more important in your partnership. Although, you seem too young to me to give in easily, and would probably benefit by asking to see a professional sexual expert via the GP, or your Neurologist/Rehab Consultant may be able to refer.

The most important thing is to live your life, do not allow this disease to rob you of everything.

Cheers

Moira

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l have always found -in the last 33 yrs of MS - that prescription drugs cause me more problems with their side-effects then the symptoms they are suppose to help with.

So l only take supplements - including VitD3 - magnesium and K2 and all the B Vits in high doses - especially Biotin B7 - as they work as anti-depressants/ pain relief. The only prescription drug l use is Sativex - which is basically herbal cannabis. And for years l have taken LDN.

The cocktail l take gives me lots of energy - stops all that fatigue and bad moods.

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Thank you both.

I didn’t realise there was a way to see a professional sexual health expert through the NHS system. Will have to speak with the GP and my MS nurse.

I seem not to be allowing my partner to help dismantle the wall. Probably stubbornness (I was quite stubborn before) made stronger by not willing to give in to this illness for as long as I possibly can. Used to call it pride (male pride, the cause of quite a few problems and arguments!) Even talking out loud on here helps.

Even easier when you state the obvious Moira. Thank you, I’m so obviously missing the obvious, or just ignoring it

Will have to work harder on my self and try and diminish stubbornness/ stupidity/ pride

Have hammered the Vit D3 (finally above 10,000 IU and pleasing my great Ms nurse), K1 and 2( about 4 or 5 times the daily dose, maybe not high enough?), but only take a Vit B multi complex along with a few other supplements (Gingko, Ginseng, Q10 amongst others.)

Am hammering the B1 at the mo, due to going abroad on holiday soon and hate being bitten by mozzies. I find B1 has always stopped them biting me after a local chemist told me to try it, even when parking in the truck stops close by to the Italian paddy fields.

Have just started taking Magnesium within the last 2 days as quite a few good people on here reckon it helps. Not sure Pregabalin is effective, but it’s certainly a lot safer and effective for me (and everyone else!) than Gabapentin.

Will have to look at hammering the rest of the Vit B, I’m obviously not taking a high enough dosage. Or the complex tablets just don’t have the right vits in the quantities needed. Will swap to individual and complex me thinks.

All ideas gratefully received as I really don’t want this illness to steal anything from me or anyone else. Or certainly as little as we can all get away with and then only extremely grudgingly

Hopefully answers here will help anyone else with a similar problem.

Or maybe allow/ show others that there no subjects off limits, no matter how embarrassing.

Someone has been there/ done that/ got the T shirt

Hope everyone is having a good day.

Again many thanks.

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See if your MS nurse can get you an appointment with your G U M clinic and they will be fit to help with treatment for ED - its one of the tough things that MS sents us males…

Thanks all.

Spoken with the Doc, seeing the urologist again in a few weeks (have to talk to him this time!) Was seeing him for bladder probs, didn’t realise he could help with this as well and see my lovely MS nurse in August, after coming back from holidays.

Hopefully relaxing in the warm will help as well (maybe a few sherbets!)

Have started properly speaking with the responsible one as well.

Something in this talking malarkey.

Hopefully it helps others get past their pride/stubbornness/ embarrassment. Or the directions kindly given to me point people in the right direction.

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Hello Dewi1jack,

Thank you for the courage you’ve shown sharing your problem with us. You’re absolutely right with the taboo subject of sex. Like most symptoms of MS it has an impact on our relationships. But it’s the ‘elephant in the room’ that rarely gets a mention on the Forum.

But that’s where anonymity comes in handy. My Mum was a nurse and spent some time in a Sexually Transmitted Diseases clinic. She would bring back some stories that you’d never get away with in polite society. (e.g. How did the Coca Cola bottle get there in the first place?)

If asked what her job was she sometimes announced that she was the V.D. Queen of Penzance. If you needed an ice-breaker at parties, my Mum was just the ticket.

Ahem, anyway; My mum was a qualified venerealologist and I’m not.

The MS Society has published a series of guides which are very well written. Have a look at: No. 12 Sex-intimacy-and-relationships-Jan-15_0.pdf. I’m afraid I’m to old to know how to create a link to that PDF.

Regards,

Anthony

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Hi Dewi,

I’d also recommend giving LDN a try, I don’t take it anymore (long story!) but as a woman I did notice a difference, my body didn’t react the same way as my head did but the LDN helped. Luckily, as with most of our weird short-circuits, that one seemed to work itself out for me.

Good luck

Sonia

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iv had same experience with pregabalin , I was on 600mg daily for approx 5yrs. it does sedate/mellow and help pain but I found that the brick wall and brain fog in my mind was lately so debilitating that I asked my doctor if I could come off it and he was happy to help. There is lot of other users experiences reg pregabalin in user forums mostly in the USA, also it’s worth getting the full data sheets reg pregabalin from the manufacturers website. A great many folk have the same problems with it. It’s a case we have to way up the pros and cons ourselves regarding use of it.

all best with it

david

Thank’z Dewi,

To read your post I hear your openness & respect it!! ta pal good man!! yeh i got some gdamd demondz & hang’s up’s i have a day2day problem’s with, always battling in my head! but ya don’t see them! no one does! & then when someone close speak’s the wrong thing! you tend too bark! then they bark back!! & you bite! not gettin grabby or pushy! js verbal, & make no friendz! & run the risk,of BIG time loosing them

& no, i don’t wont to ta take the meds/happy pill’s & take the uncertanty of side efects etc,etc. Although i do take baclofen/colmifen at night. Right or wrong i ??? but lots of salad,fish,fruit & natural Vit d,

But i do think/worry ( in my head) about what the future may hold for Mrs juju, over thinking again!!! then she says (but i love you) & i’m think’in ??? Y? no ED yet!! (touch wood, so ta speak)

Then i remember, i’m a good guy really!

All that thought can take a few seconds, but typing it??? half a gdamd hour,

ta, julien,

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Hi, my husband has M.S. an its becoming very hard to deal with his mood swings,he tends to pick small arguments with me an when am fed up with it all he says hes sorry an as far as our sex life, well it does not exits anymore, but at the same time he tries to seek it from elsewhere. Is it my mind telling me that its because of the M.S. or what, am really confused over here

Dewijack, you are over focused on the male organ!! LISTEN TO YOUR PARTNER. The biggest sexual organ is the BRAIN. Many many disabilities, not only MS cause low sex drive or ED in man. There are more ways to pleasure a woman that penetrative sex and vice versa. Experiment! ASK her what turns her on. Tell her what turns you on. Its only a Big Issue if you make it one and relationships are about more than sex.

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