[KathyUK]

Hi everyone

I was wondering if anyone had any ideas that might help. For the record the medication I am on is buprenorphine 35mcg patch every 3.5 days, 450mg pregabalin (150mg in morning, 300mg at night), duloxetine 60mg at night and topup buprenorphine 200mcg sublingual tablets as required once a day.

For the last 5 or 6 months my sleep has been getting progressively worse. I am struggling to get to sleep and often don't drift off til just before I'm due to get up. On average I get around 2 hours a night, with 3-4 hours being considered good (and I wake a few times so it is broken). At first I thought it was entirely pain related but it has become clear that it's not. Even on nights where I have been fairly heavily medicated (such as in hospital on IV morphine) I have not made it past half an hour or slightly more of unbroken sleep. I have found myself going to sleep suddenly for a minute or so repeatedly through the day. It is not anxiety related and I have tried relaxation techniques unsuccessfully. I am not sat in bed telking myself it won't happen either.

Also for the last few months, again getting progressively worse and not pain/fear related, I have been losing sexual sensation where it is most needed (sorry). I can only reach orgasm after a long duration and don't feel any pleasure in that particular area at the front, just a bit of soreness afterwards, and the orgasms feel different, tender and not as nice. Desire/drive is all there and it is definitely not psychological other than in how sad I am that the sensation is gone. It ties in timewise not only with my burning spreading to the front pubic area and groin but also with the rise in pregabalin and addition of duloxetine to my meds.

I was wondering if anyone else has had these problems and how they have dealt with it.

Thanks

Kathy
xxx

[Brambledog]

Hi,

No you're not alone with this issue, and it is a tricky one to raise.

Wih regard to the sensations thing, I found this a real problem on pregabelin, and didn't realise the med was the reason until I had to stop it because of body-wide electric shock symptoms that made me jump and sweat in fear. Doc got me off the pregabelin fairly quick, and over the last 6 months of so since things have improved. I do still find sex a bit of an issue, as so much of my skin is hyper-sensitive now and there is a very fine line between pleasure and pain... I don't envy my husband at all trying to walk that line, poor man

Must admit that I tend to skip the more intimate foreplay aspects a lot of the time now myself, and I concentrate on enjoying the basics and having a giggle with each other. I can't honestly say I have orgasms often these days, they aren't what they were, but the endorphins are still working for me lol, I feel more tired afterwards, sleep quicker and more soundly after as well. All a big bonus!

I do think it's very important to try to keep your sex life going, but don't feel you have to fake it or endure anything that is uncomfortable. Talk to him and find a way through the CRPS thorns, a good sex life is still possible and enjoyable. It's like every other aspect of our lives with this thing, compromise and making the best of things.....

I'm not sleeping well myself at the moment. I hate it when my husband is soundly asleep next to me and I can't even get comfortable. Feels very unfair. I'm actually off all meds now apart from lidocaine patches, and I'm coping better than I thought I would. I found the side-effects of the meds were even more of a mare than the CRPS pain, and coming off has made me realise that they weren't doing much now anyway. Glad I did it. I still hurt, but I'm more me again than I was for a long time.

You're not alone, I hope things improve - let us know, and feel free to message me if you want a chat any time. Good luck!

Bram.

[catra121]

I too have gone off all meds except Lidoderm patches and clonidine patches. I agree that the meds could have something to do with some of the issues you are having regarding sex...I know it was a side effect listed on a lot of the various meds I was on over the years when I was still taking them. That said...I also agree that it's a VERY fine line between pleasure and pain because I too am very hypersensitive. It's hard to find a comfortable balance too in letting your partner know what's good and what hurts...especially when those things can change from day to day. Like everything else in life you just have to find a balance and may just need to do things differently to achieve the same end result.

With regards to sleep...that's a tough one. I know two things have really helped me with regards to sleep as I experienced over a year where I was lucky if I got 3 hours of consecutive sleep and often would get less than 30 minutes at a time before waking up.

The first was that I started to sleep better the further along I got in physical therapy and the more "normal" my routine got. Get up in the morning, try to have a schedule of things to do throughout the day (which for a while was all my physical therapy exercises, taking the dog out, etc), and then go to bed at a reasonable hour every night (whether I slept or not). Gradually, as I became more and more active, I started sleeping a LITTLE better. Not much...but a little.

The biggest thing for me was a month or two after I started tDCS treatments I starting sleeping longer and better until now when MOST nights I get a good night's sleep of 6-8 hours. Every once in a great while if I'm dealing with a flare or extra pain I may have a sleepless night...but it's pretty rare now. I was able to get off the amitriptyline that I was taking to help me sleep before. I don't know how or why this worked but I cannot tell you what a positive affect this has had on my pain and my happiness and energy levels to get regular sleep again. I don't think I will ever take it for granted now. If I got no other benefit from tDCS besides the sleeping (and I did) then I would still think it was worth the $300 or so I invested in getting the machine and doing the treatments.

On the odd occasion now when I know that I NEED to get a full night's sleep I will sometimes take ZZZquil. It usually allows me to fall asleep earlier than I might otherwise (so if I need to be up for work at 3am I will take it at 7pm so I fall asleep earlier and can get a full night's sleep instead of falling asleep between 10-11 and only getting 4 hours). Maybe something like that could help you?

[KathyUK]

Thank you so much you two, I really appreciate you replying, especially when it's such a sensitive topic.

Bram - yes I've read that both Cymbalta and Lyrica can have this effect on men and women. I think I've made the decision to come off both, but I am going to wait and get guidance on that from the pain clinic as I'll probably have to do one at a time.

My husband is absolutely great - he is totally understanding and commited to making sure I enjoy any experience we have, whether that's sex or just a lovely cuddle. He is very attuned to me but he always has been in all aspects of life, I'm very lucky that way. Unlike with my ex husband, I would never feel inclined to fake things with him. We talk about sex very openly and we've discussed this issue - I wanted him to know it wasn't him and he's been great. He's been quite inventive trying to work out ways to solve the issue lol!

I know what you mean about the endorphins side of things too. I tend to ignore pain throughout sex, mostly because if it was really bad I wouldn't be up to it anyway, so lesser pain can be put on a back burner in the throws of passion, haha! After successful sex, there's that period of time where you feel languid and the most comfortable you've ever been - that's when I sometimes get a good sleep. I haven't really got to that stage without the orgasm though, although it's a similar but less intense effect when we just cuddle and (non-sexually) stroke and don't go for the end result.

catra - thank you as well! I get where you're coming from about routine. It's a fine balancing act to make sure you don't overdo it (I tend to as I don't want to be seen as weak, daft I know) but it does help. I had a "normal" day yesterday, visited my sister, got my hair cut, overdid it a bit but slept better for it. Very sore today and have a thick head, but the former is because of overdoing it and the latter is the meds I'm sure. I got 5 hours though, yes five whole hours, and I only woke up four times (mostly the pain of turning over).

That tDCS sounds great too. I'm lucky in that I've been accepted onto a trial of the Alpha Stim 100 machine, so I will be having a go with that next week onwards. They're really expensive to buy so even if it's successful I probably won't be able to get one, but if it works it passes time for me doesn't it.

I am really worried that this sexual issue will turn out not to be the meds - my common sense tells me that the meds being responsible is more likely, but with the burning I've had "down there", I'm so scared it will be permanent. I don't know how I'd cope with that, I suppose I'd just have to but it would make me so sad.

Anyway, thank you so much for the help, I really appreciate it! xx

[Brambledog]

Just throwing this one out there as its along the same lines....

I sometimes get random and severe nipple pain for no particular reason, and obviously if it happens at a particular time it is no fun at all! Does anyone else get this, and have you found anything that helps?

It feels like a pin being stabbed there, and is really horrible. It doesn't tend to last long, no more than half an hour, and I've found that warming it with my palm eventually calms things down, although as expected the whole initial touch thing is awful.

This damn condition/syndrome/disease/illness does really know how to put a crimp on your life!

Bram.

[KathyUK]

Bram, last night I had very similar through my *ahem* girly parts. It was a stabbing pain and hurt like hell. I don't have a cycle any more thanks to the mini pill but it did make me wonder about the inflammatory nature of CRPS and its effect on those who do. My periods were hell on Earth back in the days before the pill and I can't imagine going through them alongside CRPS.

Last night I lay awake til after 6am, this sleep malarky is getting beyond a joke!

[HeidiB]

Ive had the same problem, I have thought bout talking to my doc about it but how do u bring the sex subject up w/a young doc w/ur mom in the room w/you?? LOL but I have been dealing w/the lack of sleep for proably 7yrs now, I have found that over the counter sleep aids help to fall asleep but noting keeps me sleepin, if that doesnt help talk to ur doc because of med's u take he/she can maybe give u something to help u sleep & I know when Im in the hospital I never sleep just cant do it. As for sex Im also w/you on that I am 34yrs old & feel 100yrs some days the thought of sex becomes a question of is it worth the extra pain whats the easiest way to do this & lets just get it done sometimes for me which really sucks to be honest but by the end of the day Im so wore out & dont want to be or cant be touched so my advice is foreplay do things that are easy on you & if possiable try new things that excite the both of you then it mite be easier to "reach that point" & be more enjoyable Ive done it & at times it works~ Good luck I hope this helps
Heidi

[Brambledog]

Well, as we're getting all nitty gritty on the subject lol....

Night time is the worst part of the day for me anyway, the pain and burning is always going crazy and on top of that I'm tired and fed up with a day of pain. So about a year ago we sat down and talked about it, and now we mosly have our fun either in the morning or during lunchtimes. I thought it would be a bit forced and weird and awkward to go to bed in the afternoon, but actually it's quite fun and sexy, we send the odd winky-face text or my husband phones and says 'are you ready?!' as he leaves work. We are true converts to the idea of 'afternoon delight'

Again, it's the adaptation thing. If the 'normal' way doesn't work with the CRPS issues, then you have to make a rude face at the CRPS and come up with a way around the problem. My pain is less in the morning and afternoon, I've got more energy, and my husband prefers not to wait until he's exhausted at the end of a long working day too. So it's a win win And we have a deal that if either one of us just isn't in the mood, we just text and say so, no questions asked lol.

I used to feel just the way Heidi describes, the 'get it over with then' thought was there one night and I just had to address that one straight away - I think that's a slippery and dangerous slope in a relationship. Sex would end up as no pleasure at all, but a chore, a reason to resent your partner, a wedge between you at a time when there is enough to deal with without adding intimacy to the CRPS 'bag of things we can't enjoy any more'...

Of course it's not quite the same as it used to be, and there are days I just couldn't bear the contact. But on good days I still enjoy it, and I love that I can't concentrate on the pain when we are together I think that's worth booking a few extended lunch breaks and making sandwiches ready for him to take back into work with him afterwards!

Bless. I've lost enough, I'm keeping this as long as I can.

Bram.

[Djhasty]

I can relate with each of your posts. I am menopausal. I am 50 so I am not that old. Don't know if that adds to the problem, but it might. Couple that with the CRPS, my parts are non-functional all together. I know I have CRPS (and spasticity) in my bladder, so I figure it must be also in 'those' parts. I have to catheritize at least 3 times a day to get the urine out. I am on Cemcalta too not to mention all the other meds. Besides it all, sex just wears me out and makes me sorer no matter what time of day my husband and I try it.

As far as the stabbing pain in the breasts and nipples, I had that before too. In my case it was my hormones at work. I was told it was an indicator that my overies were still functional. It was only in my left breast and came and went. The Docs had left my ovaries in when I had my hysterectomy. So even though I didn't have a period my ovaries still worked. Now that has resolved too since I am menopausal. Nipple pain is gone ... so is sexual desire ...

[KathyUK]

Thank you all so much, you're all brilliant.

Bram - I had to giggle at a bit of your post, because I had visions of your husband going back to work after lunch with his hair all messed up and a tie and glasses on skew-wiff lol. I love your ideas, I am going to try and encorporate private time earlier in the day too (morning sex rocks anyway). I hope it doesn't sound "wrong" that I think you and I think alike on this - your last sentence says it all.

Djhasty - it sounds like you've had a really difficult time of it so thank you for being open and sharing your experiences.

Heidi - great advice there, thanks. The "let's just get it done" feeling was most of my last marriage, and I can't go back to that as I let it become a pattern (for entirely different reasons, mostly cos he was rubbish ). While it wasn't what caused our split, I'd be lying if I said it didn't contribute. Besides, Baz is amazing, he puts more than enough effort in and he wants me to enjoy myself too as that's a big part of it for him as well. I think he'd do without if he thought I was in any way just going through the motions for him, although it has been suggested to me by others that I just focus on pleasing him and forget about me. I told him that and he looked genuinely horrified.