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.

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.

Thank you so much Bram 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?

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". lol

Thanks Kathy, you did make me laugh!!

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 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.

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!

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