I so much apprciate the "honest" conversation here as we try to help each other out. I really like the humor and possitive attitude you all have on this subject. However, I'm a little sad about this. My husband has been great in taking me to Doctors when I'm sedated but emotionally he's become very distant.
I have CRPS in left hand since Dec. and it's locked into a contracted position.
He acts like he's doing me a favor to have sex with me now, not much affection and I do most of the "giving" while trying to keep my hand out of sight.
Any advice?

I'm so sorry that you are going through this (both the RSD and the difficult situation with your husband). I've been very lucky with my boyfriend and our relationship. I think the most important thing you need to deal with right now is the relationship itself. No one should be doing anyone a "favor" when it comes to intimacy. I know that for me and my boyfriend it's the small things and those moments of "normalcy" that really mean the most. Things like sitting on the couch together and watch a movie or a tv show. Or he'll be reading the paper and tell me about what he's reading (since I am terribly ignorant of anything going on in the world). We talk about work a lot and text each other all the time. It's the small things that matter most and keep us close. My hard times have been his hard times too...so we both celebrate all the little, normal things that we can. I know it's not exciting...but it works for us. The sex...we do that when we can...when I can...but the other stuff is EVERY day.

I have always said that the best support my boyfriend has given me is treating me normal. He supports and helps me but he doesn't treat me like I'm broken. And despite my limitations and everything I deal with because of RSD...I don't FEEL broken because he doesn't treat me that way.

I hope you guys are able to sort things out. We've all been through tough times in our relationships. You just need to find that closeness again. Good luck to you.

No more medications for me. Not being able to orgasm was a dealbreaker, so I have fully come off the Cymbalta AND the Lyrica. It wasn't hard either, so I am so glad to be off them. Of course I have to face stuff now that they fogged out to an extent, and am quite happy to be very angry about it lol. No acceptance for me either, I refuse. The pain clinic said I would get counselling to learn to live without a sex life (and accept this, accept that, give up, give in, bla bla), I don't think so matey! I am actually sleeping better without those two meds, madness considering how drowsy they made me in the beginning. Sex wise, well I'll have to wait and see if that comes back, at the moment I'm too angry at a few things, mostly that what is actually causing my pain is not being addressed, and CRPS is being called "a label" rather than a real thing to be dealt with. Pain clinic say I do have "some CRPS" but it's not my "main diagnosis" and yet want me to live without having an answer to the question "If that's not my main diagnosis, what is?". I think they get paid to totally screw up people's heads.

I am so glad it's upped your libido - that was never a problem for me. My problem was/is mechanical in some way. I want it just as much as ever sadly. Maybe not with my husband at the moment but that's just a spat today.

Oh sweetie, everyone deserves better than that. I would say if you really love him, try and talk it through, maybe counselling if necessary. If he is half the tosser he sounds though I would be questioning why you are punishing yourself - do you not think you deserve better? I'm not saying you *shouldn't* be with him, he might be really lovely and it might be just how we as the people who beat ourselves up interpret this kind of thing when someone seems "off" with us, but it's always best to remember you deserve to come first at least half of the time in a relationship. Emotionally and physically!

Please excuse my frankness tonight, my husband has slipped from his pedestal today. Not his fault, he can't be perfect all of the time, and this horrible pain doesn't just hurt me. That said, there won't be shenanigans tonight!

And they say acceptance is the key to our salvation!!

http://www.youtube.com/watch?NR=1&v=...Y&feature=fvwp

One advantage of having a girlfriend with RSD is the best way for my girlfriend to fall asleep is in my lap in a recliner... She says the rhythm of my breathing and my holding her makes her fall asleep very easily. Since I don't move much, I can hold her solid so she does not move or shake too much. By doing this she can sleep peacefully.

I also thinks she is using me to keep warm because she is like an iceblock. Quilts are too heavy for her to use.

I do not complain too much because she is so small and nice to hold. I just love being her boyfriend.. lol

Awwwwwwwwwwwwwwww

I'm not sure if I dare write this. I'm going to anyway, so if I read anyone posting this on my family's facebook pages or handing it over to the press I may have to take deadly action

Firstly I'm sorry for not being around recently, I have not been good company and then when I picked myself up I had the following to deal with (and went away).

The missing pleasure thing is resolved. Miracle I hear you cry! Well yes and no. Because although coming off Cymbalta and Pregabalin has obviously got things working again, which is great, it's not so great when you're having 5 or 6 a night spontaneously in your SLEEP, coupled with night terrors and sleep paralysis. I am knackered. OK so the spontaneous ones lasted about a week (not each one lol) but the sleep paralysis is ongoing, nightly and about 3 times a night. I am beyond exhausted. I'm glad the O problem is resolved and I guess the weird week was down to that "realigning" a bit. I genuinely hope it doesn't happen again, it's not very nice, especially when in the throws of a terrible "I'm going to die" type of nightmare.

I've always had the sleep paralysis, I remember seeing the GP about it years ago and him saying it was normal. It's not normal to have had it every night for a month now. It feels like longer. I don't think it's helping that the CRPS keeps me awake til God-knows-o-clock. Everyone keeps saying it must be stress, but it's not, don't ask me how I know because I just do. I've had a relaxing break in London (to see Pink in concert, whoo!) and have been much more active regardless of pain levels, so it's not that I'm not wearing myself out either. I am guessing it is being caused and then made worse by me not getting to sleep til 4 or 5am in the morning. I don't feel restored at all by sleep (presumably because I'm not getting to the restorative stages of sleep) and once everyone else is getting up there's no point (or chance) of carrying on the sleep. I either conform to everyone else's sleep pattern or do without. I don't think anyone (Baz included, bless him) realises how knackered I really am.

I know if I see the GP about this he will give the stock advice of it being normal and warn me of the risks of sleeping tablets and do sod all as usual, so if anyone has any advice I would much appreciate it.

Hi Kathy,

I'm so glad at least one issue is resolved for you! And equally glad that that weird week is over....must have been very peculiar and exhausting

This may be complete psycho-babble nonsense so feel free to ignore

I'm wondering whether some of your night time issues may be BECAUSE you are more stimulated in mind and body than you have been for a while....perhaps because your sex drive has returned, and you are doing more, your brain is taking some time to get used to the 'new normal'. I know when I moved out of my sedentary nightmare phase of life and started doing more, I found myself feeling knackered and wakeful much more than I expected to, and I had some very weird dreams and twitchings. I know it's not the same as what you're experiencing, but I'm trying to say that it might settle down as your whole system gets accustomed to the changes in meds and your life.

In the meantime, try some good ole relaxations techniques like the warm bath, soothing music, lowered lights after 10pm, no coffee or tea after about 8pm, even meditation tapes (free ones on iTunes) are very good - and I was a real sceptic about that!! Another odd one I try is keeping a small notebook by your bed, and writing down any worries or concerns you have in it, especially if they're anything long-term or about the day ahead. Then put it away in a drawer or something out of sight. I found it really cathartic and I dreamt less, or at least remembered them less!

Hope things get better really soon for you, it wears you out just trying to get to some sort of liveable 'normal'...

Bram.

KathyUK,
Love the word 'knackered.' I am going to add it to my vocabulary. I too have been feeling knackered for the last few months.

As far as your ... ah hem ... sleeping problem, I have to agree with Bram. It is likely the change in medications (stopping the Cymbalta and pregabalin). Personally I have found that Cymbalta leaves me more open to sex, although it has taken away my ability to finish (you know what I mean). Okay, I'll be a big girl and just say it. Orgasm. Cynbalta definitely messes with the mind as well as the pain we feel in our muscles. Guess we have to make the choice of either being zombies or living a more functional life. Sounds like that has been resolved in your case, as well as the the adjustment phase. As things settle down, I hope the positive effects continue for you.

As far as the night terrors and paralysis, I imagine it will take weeks for the effects of the two drugs to wear off from your system. Have you had any other drug withdrawal symptoms? My experience with withdrawal was horrible. I hope to never go through that again. Though with the antidepressants and opiates I am on, the chances are greater. Bram's idea of having the tablet by your bed to write down your thoughts/dreams is a good one. Jotting things down may help to ease the mind a bit.

Hoping for the best for you.

I suppose if I were young and able to do normal things and miss my sleep I might do it as well. But, it seems as though if you're doing this well without medication and burning the candle at both ends then the RSD might go away completely if you can find a way to get your sleep.

People who get over RSD get both sleep and exercise. They are usually young and they usually are able to get over it in the first couple years. RSD becomes more chronic and insidious as times goes on. I've had periods when I got a little better and periods where I get worse.

My first doc told me that if I ever do get over it to try not to forget because a new injury can bring it right back. There is a strong tendency for the waxing and waning of the disease to be marked by injuries and periods without them. Some people do have it clear up entirely and not come back.