Oh one last thing - thank you all so much for being so comfortable talking to me and each other about this, I am so so grateful and pleased that we could. Aren't we dead comfy and grown up!

I'm honoured, lol and that description isn't far from the truth... Your Baz sounds like a star chap, I'm sure you'll be fine... Have fun very soon!

Bram.

Getting sleep is important with RSD. Find the problem and correct or medicate it. i have a fine tremor that prevents me from sleeping but tizanidine quiets it and I usually fall right asleep. Sometimes just taking your medication at different times of the day will help. I take the ones that wake me up in the morning and the ones that put me out at night. Talk to your doctor first.

Reuptake inhibitors can interfere with sexual and other processes. If any of your meds are such there might be nothing you can do to fix the problem. Almost all the mood drugs are reuptake inhibitors and they all interfere with me (especially digestion) but some aren't as bad as others.

I started taking Amitryptilline and it caused my libido to go way down hill as in non existent. I just started Gabapentin and it is starting to go through the roof. I have also had the nipple shooting pain. A couple times I had to look to make sure they were still there and didn't decide to shoot to the moon. I have been looking at all the meds that are used for CRPS and the one that had the least amount of side effects is the Gabapentin. I'm still not happy about having to take so many meds just to be able to take care of my son but if they work then I am happy. I was just about to start a post about the Gabapentin upping my libido. My husband thinks its great but my knee at times starts yelling in the middle of any "fun" we have.

Lol I have to prop my knee on a pillow for 'fun', suddenly yelling 'OWWW' in the middle is guaranteed to put even the most understanding chap off his game... Oh the things we have to do to get around this condition!

I've also recently done a lot of reading about meds, because I couldn't decide what to try when my pain really ramped up...
Gabapentin is widely applauded as a treatment because it is cheap for the doctors to prescribe, in fact a lot of docs are told flat out to push that as a best option. There is also very little empirical evidence that it is a good treatment for RSD/CRPS. Some people achieve some relief from it, but the drug was not developed for treatment of neuropathic pain, and docs don't really know why it works on it. The main thing though, is that it is cheap.

The med Lyrica is a related drug that was formulated from part of Gabapentin. You have to take a lot less of it to achieve a similar effect (on Gaba you can be on poss max 3600mg per day, on Lyrica 1200mg), the side effects are less, uptake - ie the amojnt of drug that your system actually absorbs - is better (Gaba about 30%, Lyrica 90%). I'm not saying Lyrica is the best thing since sliced bread, I'm not a rep for it lol, but I had a lot of gastric issues and other side effects with Gaba, my GP said they were very unlikely to be because of the drug, but when I saw my pain doc, she said it was very common as Gaba "could be nasty stuff". My intense nipple pain has hardly happened since I've been off it.

When I first came off Lyrica and titrated on to Gaba, my pain levels were unchanged. On just the Gaba my pain levels slowly increased, even when on highest dose. When I had to come off the Gaba because of my gastro problems, after liver and kidney function tests, I braced myself for the pain increase....but felt no change in my symptoms at all. I don't think it was doing a thing for the pain.

If Gaba works for you, that's great, but there's some very misleading info out there because it is pushed so hard by the drug companies and docs. Lyrica is expensive to prescribe and so the docs don't want to do it. It's not perfect, and of course has side effects, but personally it does at least do something for my pain.

We all do what we have to. I just we could be given clear and unbiased information about our condition and it's treatments instead of having to fight on in the darkness ourselves!

Have a good day everyone

Bram.

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