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! ) 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 ) 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.

Thanks you guys for being so bloomin' ace.

You are ace most of all Kathy

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

Look after yourself,

Bram

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.

Oh I so know what you mean! 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!!

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!"

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 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 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