Sleep and sex problems, adults only pls
 

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

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 :rolleyes:

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.

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?

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

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! :rolleyes:

Bram.

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. :eek:

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

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

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' :hug:

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 :hug: 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.

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 ...

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. :D 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. :grouphug:

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 :p ). 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. :eek::D

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! :cool:

I'm honoured, lol :D 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 :winky: 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! :eek::rolleyes: 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. :wink:

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! :grouphug:

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! :p

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

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

:rolleyes:

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 :D;)

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 :rolleyes:

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

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. :grouphug:

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.

It's a lovely thought but never going to happen for me. I've been told there's absolutely no treatment left to try and it will be permanent, all that's left is counselling. I'm not without medication, I am taking buprenorphine 35mcg patches and 200mcg sublingual tablets just to get up but have become tolerant and my doctor won't change them as he says if I'm tolerant to one I am tolerant to all, so he says there's no point (I know he's wrong but it doesn't make any difference if he refuses, I have to do without regardless). The only meds I am without are the zombifying anti-epileptics/antidepressants. Neither of which did anything at all for my CRPS.

Started having the weird sleep adult thingies again. Pain levels are through the roof presumably from lack of sleep and I have resorted to using my secret tiny stash of Oramorph that I cannot get a repeat for. Also got a couple of diazepam left, and because I've been having spasms, I am thinking of using them too but with my docs refusing to prescribe them ever again and me not having anything in reserve for a day like the day I ended up in an ambulance, I am reluctant to use them up, even though I need them!

Oh dear Kathy...

I haven't got anything useful to suggest, but I do understand that terrible hopeless feeling when you just cannot get your pain under control, and it is ruling every second of your day.... Just hang on in there girl, sounds like you are having a bad flare of pain, and it will hopefully subside at least enough for you to feel a bit brighter and more human again.

I do think it's worth seeing your doc. He needs to know that this is going on and that your pain is NOT under control. That is his job - it is a basic right of a patient to have adequate pain relief - and it's not your fault that the CRPS pain is difficult to manage. I know another fight must seem an exhausting thing to consider.

Hold tight to your sanity and do what you can to distract yourself for now....I will be thinking of you and hoping that things improve for you quickly :)

Bram. :grouphug:

Thank you so much Bram :grouphug: I hope you're doing better?

I am so tired of fighting with the GP, we don't argue as such, he just talks me down from having anything because he says his hands are tied if the Pain Clinic won't write to him saying it's okay for him to prescribe x, y or z. Thing is, they expect him to use his initiative a bit and not be such a coward. So when he doesn't prescribe, I think they think I can't be that bad. Hobbling in there in crocs cos I can't wear shoes, with a rollator cos my legs don't work and not being able to sit in a chair would suggest otherwise to those with common sense I think? :wink:

Adult sleep problem didn't happen last night thanks to a pre-emptive strike from my husband. Nice work Baz, you deserve a medal. Got me to sleep too, although I woke at 3am with the spasms and didn't get back to sleep after. My body I swear is the real one I'm at war with!

I am at the GPs tomorrow. I am taking Baz and possibly even my sister as I need someone else to say "Oy you, get yer finger out yer backside and do summat". :deadhorsebeat: lol

Thanks Kathy, you did make me laugh!! :D

Good luck at the GPs, and good plan to take reinforcements for support. No matter what happens, I suggest you write to your pain specialist and tell them the issue with your GP and ask them to clarify the situation to him in writing. GPs are notoriously pathetic creatures when it comes to pain meds, and yet I know from my own pain doc that THEY aren't meant to be the main prescribers.....stupid damn system if you ask me.

And excellent plan to deal with the other *delicate cough* issue as well......just tell your Baz that he should be limbering up regularly :winky: I just love the phrase 'pre-emptive strike'.....hahahahahahahaha!!!

I'm feeling ok thx Kathy lol. Foot is feeling weird and buzzy, and knee is going through a fat warm phase....otherwise I'm fine lol :)

Bram.

Eh up Bramble - yep it was a pre-emptive strike, we're getting very military about it, but in a fairly laid back and spontaneous way. Wasn't expecting anything out of last night because of my spasms, but give me a diazepam and a hot shower on my back and try and stop me once I get it into my head it might help lol. Baz and I are so lucky, without being too gushy (I hate gushy), still fancy the pants off each other after 13 years. God knows why he does, I think him being blind is in my favour LMAO. We joke about slinging ovenmitts on him so he can imagine I'm Anna Paquin or someone equally gorgeous. :rolleyes:

Letter wise, done and dusted a while back but I might do it again. Last time I got a very short paragraph reply to a 2 full pages letter, in which I got my "diagnosis" of "lower back pain" lol. Not what I was expecting but became a pretty good indicator of how naff the connection is between him and I! :rolleyes:

Do you think the warmer weather's affecting your swelling? I hope you get some relief from the buzzing and pain too xxxx

I've been reading through this thread, and there are so many good comments on a tough subject (and a lot of humor, which I appreciate! Can't let pain win and take away your sense of humor!!!)

I was lucky and my RSD went into remission years ago - I joined here mainly because of my daughter's experiences with RSD - but I still have CFS and fibromyalgia, which produce similar symptoms, although not nearly as extreme. I've battled sleeplessness and sex difficulties for years. Sleep difficulties are pretty much every night :( sometimes I just want to hit myself over the head with a hammer to get to sleep!!!! Lately, I've found that ocean sounds help just a bit (we moved from California to Arizona 6 years ago and I miss the ocean!!). I have a nature sound app on my ipod, and I bought a good little wireless speaker, and have the sounds play for 2 hours. When I was back east with my daughter for some medical treatments, I finally got her to try it, too (she scoffed at it helping - you know kids sometimes! :D ) and she found it helped her, too. I'm not talking HUGE help here, but even a little is sometimes enough.

As far as sex - yes, it's a battle with the things mentioned here - that line between pleasure and pain, for example (sometimes the only thing that doesn't hurt on me is my eyebrows!) And it's hard sometimes to not have the "let's just finish it up" attitude. OTOH, my husband needs it more than I do, so we definitely have to handle that with good humor and grace, and he understands that I have to pick and choose times to invest the energy to achieve results. And I try to keep telling him (because men have a hard time understanding this :D ) that for women, often it's the relationship aspect that is more important!

Anyway, good discussion on a delicate but important topic.

Just don't give up.

At some point you must come to accept it but you don't need to give in to it. There's always something new you can try and there will be new treatments in the future. Maybe we can even outlast it.

Perhaps it's you fighting it the right way and my avoidance of triggers is my biggest problem. It's hard to know the right course and life is for living.

Can you try another doctor? That's so awful when they won't prescribe the harder-core stuff at least in limited doses. If they give you a small number per month, you're only going to save them for those critically bad times :(

I know what you mean about a secret stash ... the strong ones are like gold. You just feel better knowing you have a few big guns hidden away. I vividly remember when I was at a party at my sister-in-law's house where there were seminary students and their families present. At the time, I was on Oxy, and I kept a very accurate count of how much I had left, because we were on vacation and out-of-state and I knew I couldn't get any kind of refill until we got back home. I had about 30 left at the start of the party, and they were in a pill container in my purse, zipped up and stashed in a bedroom. At the end of the party, I was short 10. Unbelievable ... the only ones that knew that I was on those drugs were my family, so either my sister-in-law's family took some, or someone at the party searched my purse and took them. The rest of the trip was very, very hard, because I had to immediately cut down my dose so I wouldn't run out before I got home :( And I did NOT make a counting mistake - I actually had a little graph with a running daily total of how much I had left, because if I had a bad day and took extra, I knew I had to suck it up the next day and take less (I'm a rather nerdy engineer ... )

Hi again, really sorry for missing these replies, things have been all go here. Since I last posted the GP has allowed me the diazepam in very limited quantities which I understand. I am only using it for severe spasms.

The sleep issue is worse. I'm having sleep paralysis up to 7 or 8 times a night with only one night without an episode in the last 2 weeks. I don't feel like I am getting any restorative sleep at all and bed, which used to be my little haven, is now something I don't look forward to at all. Something's got to give! More CRPS and radiculopathy symptoms too, my right leg is getting tighter and tighter and the pain and sleep paralysis are meaning my mild incontinence is worse.

On the plus side I got a letter from the PMP inviting me to make an appointment. When I rang, the man who answered said noone was there that could make me an appointment so someone would ring me back. Of course they didn't lol so I will be trying again tomorrow!

You poor thing you must be so, so tired I don't now how you do anything!

My PM Doc gives me Baclofen (muscle relaxer) and I take it at night and it helps - that with a drink (I know I shouldn't have w/meds).
I know you said they have given up on further treatments and it's pretty much permanent for you. But, I haven't read all your posts so forgive me - have you had nerve blocks or a Spinal Cord Stimulator?

I'm middle age, so not young and I don't know yet if I'll ever be in remission either.
I'm glad you got some meds. to stash and I hope your Dr. becomes more educated on RSD and gets some compasion!

I do love your sense of humor especially under this "topic".
I know it helps me muddle through!;)

Thank you, it means a lot to have a voice here and to read everyone here's posts too!

I had facet joint injections as a means of locating the radiculopathy I have but they failed and I haven't been offered nerve blocks. SCS is a touchy subject as I would like to be able to discuss it with the surgeon who performs it, but the usual "route" is that the pain clinic refer you. My neurosurgeon who diagnosed CRPS wrote to the pain team recommending I was put forward for SCS, and the pain consultant refused, saying he has never seen a successful operation and that they are only made for a very small area of pain in one limb, not pain in both and my back. He says they never work for CRPS or back pain. So he refused. My GP has gone over his head and managed to swing me an appointment to meet with the surgeon who performs the SCS surgery, but whether he will take me on without the pain clinic's backing is a concern, and I think it's unlikely.

To top it off, the NICE guidelines say I have to have had all relevant other options and the pain clinic have not given them to me. One is psychotherapy and I think another may be nerve blocks. I have finally got a place on a pain management programme that might cover that first base. I have mixed messages on when that will come about, the pain consultant said I would start within a month (about 6 weeks ago now) and his secretary laughed and said more like a year. I wrote to and rang the Patient Advice and Liaison Service (again) and now I have an appointment to "discuss" the PMP with a physiotherapist next week. God knows when it will start though!

The sleep issue is really contributing to my mood and thoughts about the future (or lack of it) which I hate as I try really hard to see the positive in everything and joke things off. I hate that I come here moaning about things, and really I do it just as much to prevent me offloading to those in "real life" as much as to get that advice and support that is so amazing here. It used to be that if I had a bad night, the Kindle would save me, but now I am so tired all the time that I can't focus on a book. A new and very painful symptom (piriformis? pudendal nerve maybe?) means I am really struggling to get comfy in bed too as I can't sleep on one side due to that or my back due to seizing up, which only leaves me with the opposite side, and that means I can't change positions enough and seize even more. I've got to the point where instead of loving my bed and seeing it as the escape from the pain that it used to be, I now am pretty angry and even a bit scared of coming to bed. Which is a bit daft considering today I can't get out of it without fainting. :rolleyes:

Thanks you guys for being so bloomin' ace. :grouphug:

You are ace most of all Kathy :D

Keep going, keep fighting, keep letting us know what's going on...it doesn't come across as moaning at all, more like 'offloading' as you put it!

I hope your docs get their proverbial backsides in gear and get things moving a bit quicker for you. It's about time you had a holiday from some of this rubbish you're going through.

I hear you on the bed thing.... I've started sighing heavily when my husband mentions bed - poor chap!! No reflection on him, just that I hate trying to find a comfortable position, and setting up all the shenanigans to try and keep the quilt off my feet. It's exhausting, and I miss that 'aaaah bed...mmm....zzz...' kind of feeling I used to associate with bedtimes :rolleyes:

Look after yourself,

Bram :grouphug:

I am not alone
 

Kathy,

Shew I thought it was just me. I was feeling so bad for my husband. I kept turning him away. Plus all the hot flashes really don't make you feel all that attractive either. But I finally said you know what I don't care how much it hurts I am getting mine. Then of course I pay for it later, I have RSD in my hips if you can imagine. And then to see all of these response I am seeing that my husband was right and it is all related to this nasty thing that is trying to take over my life. It has stolen my job, my business, my house, my health, my sleep, but I refuse to give up my sex life LOL.:D

Oh I so know what you mean! :grouphug: I think good sex is probably the one "medication" that works all round even if only temporarily. It improves my mood and my sleep. Of course I pay for it later, and tell my husband "Look, you've broken me again" - it's become a bit of a running joke between us. Without it, and without him, I'd have given up. If I mentioned it to the docs they would look at me like I'm mad - as if they're wondering why on Earth I would be wanting sex at all in my state. I seriously don't think they see it as important at all. I comfort myself over that by thinking they mustn't be getting any decent action. They're just jealous!! :D

I got 3 hours sleep last night, it's a miracle!! I spent yesterday in bed til late tea time when I walked over to see my sister briefly and had to come home nearly straight away because I nearly fainted again. I think it's time to get the...da..da..daaaaaa....wheelchair. Only for special occasions mind you. I really didn't want it to go this far, not because I don't need it, I have for a while, but because I am dreading the reaction. I'm already embarrassed if I run into wider family on my crutches. The other day I ran into a cousin I haven't seen for many years - I was in the town with my twin (you know, doing too much, again!) and was on both sticks. The entire conversation felt like the issue was being politely ignored, which is what I would have said I wanted, but I also felt that because of that the cousin focused mostly on my healthy, vibrant twin and I felt a bit overlooked. How pathetic am I lol. It didn't help that we were stood still for about 15 minutes and I was telling myself in my head "You will NOT faint, you will NOT faint!" :rolleyes:

Kathy, you do make me smile :) in a good way lol!

Just get the damn chair already. Bless you, I think once you have it there you will find that it opens your life up that bit more, and you will get past the initial reaction thing.... I went there and got the t-shirt only this year, and I completely was like you about it. But once you've bitten the bullet and got that first 'outing' over with, it's fine. You just put your chin in the air, smile, and have your Chair Story ready (for when someone you know sees you in it for the first time and asks if something has happened :rolleyes: made me grin every time...)

You deserve so much more than you have right now, and the chair is a way to get some of life back. Most of all it gives me back TIME. I actually enjoy shopping again now because I can BROWSE! I'd forgotten how nice it was to wander about considering a purchase, instead of hobbling in on crutches, walking as little distance as possible, grabbing something, hating the queue wait, and getting to the car as quick as possible, feeling like I wanted to burst into tears the whole time.

Having had the chair for a few months, I'm wondering if it isn't the reason I'm having a better time now? I haven't used it or the crutches even for over a month now, and last night I actually went for a short walk with my husband. Haven't tried that for a year... I think it let's me pace activities a lot better, a trip to the shops doesn't mean I'm suffering for two weeks any more.

It's just a tool. Like getting a lawn mower instead of cutting your grass with scissors... As a fab therapist said to me once, your family will get used to it very quickly, friends will be a bit surprised the first time but then will just accept it, acquaintances will perhaps be a little shocked or ask something to start with, but after that first time the people that matter will just see YOU. And screw the rest of society because who cares what they think anyway?!

You are so right about the doctors not thinking sex is important! Observations spot on :winky: Anyone who thinks sex isn't important in a relationship clearly hasn't enjoyed the good stuff... Sex might not be what it was now, but as you say, the good ole endorphins do help with the pain and mood for a short while. Plus I like to think of it as valid aerobic exercise!! I have been known to say jokingly "prepare yourself, I need to feel something other than pain, and I want to sleep!"...

Bram :grouphug: