[Michael C]

Hi, I'm Michael C and this is my first tread.

I have had RSD for over seven years. My whole body is involved since I had a spinal cord injury in 1999.

My question has a difficult answer in that how can we differenciate RSD cause from the meds? (M.S., neurontin, effexor, baclofen, trazadone, etc.)

I have sleep apnea, but I am obese. I get up thru the night and sleep walk and will stop and stand somewhere asleep for sometimes hours at a time or until I fall. I'll fall asleep sitting on my bed and end up falling over onto the floor and/or into the furniture. If I sleep for more than three hours it is close to a miracle.

I am asking for is information before I talk to the people at the sleep clinic so I can say "People with Stage 3 or atrophic stage RSD experience these disorders", because as you all know, most docs just look confused when you ask about RSD.

I look forward to reading your responses.

[dreambeliever128]

Welcome to our group.

I also deal with those same problems. I don't sleep walk but I fall asleep on the edge of the bed sitting up or on the commode. I really try to watch this because of my arms and hands being messed up from other falls.

I have fell 13 times due to meds mostly. It took me that many falls to realize I don't belong on most meds. By then I had so much wrong with me that I can't get well.

I am only on a light dosage of Methadone and I use Lidocaine patches. I haven't fell outside for awhile but I have almost feel off of the comode as I had said and getting out of bed at night. I also have Cronic Fatigue Syndrome so I think that plays a part in my falling at night or evenings when I am extremely tired.

I had this bright ideal once that if my Dr. would give me some sleeping pills so that I would get some full night sleeps I would finally get through the not sleeping and the fatigue. He thought it was a smart ideal but told me it wouldn't work. I got so aggraviated with not sleeping.

I wake up now every hour just about. You would think a person would get use to it but I don't and apparently you haven't either. I ended up with RSD in 98 or 99 from TOS surgery.

I think it comes with the RSD. I also have Fibro and they chalk it up to that along with depression but I honestly do think it comes mostly from the RSD from what I have read. I will say though I honestly believe that the meds also have a lot to do with the sleeping problems. It's just so hard to seperate them all.

I don't have sleep apnea nor am I obese so I can't say those effect my sleeping.


Have a good day.
Ada

[Denise G]

I thought I'd add my experience with sleep problems and RSD. I've had it for 5 1/2 yrs. It started in RT upper ext, went to left, and neck, and I think it's in my feet and legs since '02.

(By the way, I wanted to ask others that had their RSD spread how it happened/felt. I mean, first the bottoms of my feet started burning at night. Then, burn during days, & burning started moving up both legs progressively. It was different with my arm, I was injured & it hit, boom! Is this how a "spread" would feel? Doctors just sigh and change the subject because it's WC & they don't want to rock the boat. One Neuro doc I saw thru HMO did say it was probably small fiber polyneuropathy. Is that RSD?)

Anyway, sorry, I've been a light sleeper for yrs, and at one point '97 was diagnosed with Fibromyalgia, so I don't know if that's why. I think so. But the muscle rrelaxants & Lyrica I take for RSD usually put me out. Although, I wake up off & on when I move, etc, and it causes PAIN.

That's the only problem I haave.

Glad to have you Michael!

DeniseG

Hi Michael,

Welcome to the group, sorry to hear about your problems - you're in good company anyway, we know exactly what you're talking about.

Unless I take a double dose of neurontin at night (I'm on a very low dose, suits me) I'll wake up often. During the day the meds are enough to push the pain into the background, but at night with no distractions it'll push in and wake me.

The RSD is in my left hand/arm and I have RSI in the right hand, plus neck problems bigtime. It makes a huge difference to spend some time getting myself organised.

Two pillows beside me on both sides to put my arms in positions that won't bring on the dead arm thing (hate that, totally dead arm scary to move it, I feel nothing in it at all, scared to move it the wrong way and break it or something....) and I've started to use a big rolled up king-sized feather duvet as a pillow (it's heaven! what a difference that has made!) to elevate my upper body and keep my neck in the right position. But also taking care to tilt it so I don't get a headache in the morning (usually have one, though).

Sheesh, so much to do..very rarely sleep without a few wake-ups, though. Gone are days of just yawning and rolling into any old bed, insensible to the world....

But the things I'm learning about sleeping positions are paying off I reckon. Oh yes, I often take half a zopiclone to get me to sleep...don't need much, just to get me really sleepy, tip me over the edge, and easier to get back to sleep when I wake up, not groggy in the a.m. either. Been on them too long, but I can't find anything else that doesn't affect me like a sledgehammer.

It sounds like you need to get that sleepwalking under control - falling is just about the most dangerous thing for an RSDer, and anyone over 55 in general (don't know if that applies to you), but anyway good luck when you see the docs, please let us know what happens,
all the best - and again, welcome!!

[Rainbow422]

Thank You all for your insight full bits of experience. Mine has been getting quite bad lately. I used to sleep quite well, in younger days would sleep for days besides eating and bathroom breaks. Now I am up every two hours.

It is exciting to me, when I can sleep for more than 3 or 4. It seems I am spending alot of time trying to get to sleep and then the smallest thing can wake me up. Then I am up for an hour or two and back down again. Most of the time when I lay down, I cannot even go to sleep. I know for a fact that a sleep pattern like this can bring on depression.

I knew that there were sleep disturbances with CRPS/RSD, but I never imagined that I could not get a full nights sleep ever!!!!

I also seem to be constantly fatigued; do you all have the same issues?

[frogga]

Hey

Hey michael, nice to meet you!I also have full body RSD.

I haven't slept for more than about 2 hours at a time for abour 5 years - and I don't think you can get used to it. Pain wakes me up and keeps me awake and because of my dystonia i get woken up my muscle spasms/ muscle spasms throwing me out of bed (always a fun one!) or nowadays - muslce spasms getting me stuck through the cot sides on my bed (that happens far too much..).

Anyway - like Artist I find the best thing to do is have LOTS of pillows... and if you can to tilt the bed (mine tilts upwards/ downwards and is generally a walking talking bed).

Fatigue - I mine swings from being in the background (like over the summer holidays I spent alot of time in bed/ resting and the fatigue calmed down) and since being back at uni I feel like a functioning zombie...

lI think every RSDer has sleep problems - but they also seem to be different sorts/ different intensitie.s

Take cAre

Frogga xxxx

[AnnaBananaBean]

I normally can't sleep for more than 2-3 hours without being disturbed or woken up by pain. I always get super cold when i sleep, but wearing pajama pants and having a sheet touch my leg often wakes me up (although funnily enough wearing blue jean pants all day long seems to be absoulutly fine... but im a weird kid haha)

So i came up with this little set-up, i took a pair of old flannel PJs and cut off the left leg, my rsd leg, and and left the right leg long, so now i sleep with a pair of cotton shorts and these hideous looking pants and leave my left leg out from under the covers. My mom thinks it looks ridiculous and threatend to throw them away because quote- "your leg is just fine, stop being such a wuss".

I dont know if its from a lack of sleep or what, but i find myself falling asleep in the weirdest places. My boyfriend hates it because ill be laying in bed with him talking (or doing other extra curricular activities) and ill just sorta slowly drift off to sleep. Hes a sweetie though so he always just sucks it up and lets me take a little nap, just cuz if he doesnt let me its bound to happen again!!! And apparently i look just adorable when i sleep. good to know, eh?

Today i fell asleep on the bathroom floor after my shower. And a few days ago i fell asleep at a restaurant on a date with my boyfriend. I layed down in the booth for a second and bam, i woke up like 5 minutes later. Kinda sorta almost embarrasing.

[dreambeliever128]

Reading this makes you realize that not sleeping most likely comes with the RSD.

I start out with pajamas on and by morning I'm in a gown. I tend to get too hot in pajamas. Last winter I could sleep with the heat all the way down but now I'm having to turn it up at night because I hurt more if I'm cold and then I get too hot and off comes the pj's.

As I said before, I'm awake all hours of the night. I sometimes sleep 2 hours but a lot of times just one at a time.

I have not gotten use to it and I am surprised how many are going through the same thing.

I use the pillows too but I start throwing them off of the bed too because they bother me and I put cover on me and then throw if off all night long.

Are any of you on any kind of med that seems to help with this issue? I was just wondering if any of you had found anything that might work for the sleep issue.

I don't sleep walk Micheal but that seems like it might be a different issue. I do get up so tired that I fall so I have to watch about that and same with going almost falling off of the bed if I'm sitting up and falling asleep.

This is one problem I wish we could find something to help.
Ada

[Sandel]

Hi there..

Sory to hear you all are going through this, I remember the sleepless nights all to well.. I have meds to help me sleep and they do work (for me).

An hr before bed I take 800 mg gabipentin and I double up my normal dose of baclofen to 40 mg, Trazadone is the secret ingredient I think 150 mg, though 100 mg didn't help at all.

This combination took alot of juggling to find, and I do find it is not as complete a sleep as it was when I started with the trazadone 9 months ago. I get 5-6 hrs of sleep IF I don't allow myself to nap during the day and IF I lay down within an hr or so of taking my meds at night. At first I got a solid 8 hrs... mmmm heavenly.

I hope this helps some of you there are meds that work you just have to find the right combination, SRT's help as well..

I too have full body RSD with organ involvement and without a decent sleep patern I fall to pieces very quickly.. I realy feel for you all cause I have been there, and I know that without these meds working for me I would be back in that same nitemare cycle again.

gentle hugs and sleepful wishes,
sandra

[AnnaBananaBean]

Oh, i also forgot to mention that i sleep walk.

a lot.

during the summer i tried to get in my car and drive to my best friend's house because she "was expecting me, we had english homework to do together!" Mind you it was June and we didnt have school then. Thank goodness my little sister was up and stopped me. Could have been some trouble otherwise.