Sleep/RSD
 

Are there any here who Don't have sleep issues?

I use a CPap machine, sometimes I attach an O2 concentrator. (Well, I have a TBI also, so the thought is, the O2 helps the pain and healing of the brain).
Need meds to sleep.
Something to wake.

Anyone ever take Provigal? I find it to be the Devil's own drug.
(I do take aricept and the like, which are for altzheimer's), it's great for the TBI, but Provigal is just speed to me, and really cranks up the pain.

Of course, the CPAP makes me feel like I"m in an alien movie with a "face hugger" stuck on me. But, It REALLY helps me with alertness the next day! And generally feeling rested.
I've used cervical pillows, and etc...

Who has sleep woes, and what do you do for them?

Pete
asb

Sleep?????
 

Pete,

Sleep! What is that? I have no idea, what that is? I am burning up the computer all the night. Sleeping and laying in bed can be so brutal. I just make the best of it. Sleeping meds make me feel so bad in the morning, but I do use them at times. I am prescibed Seroquel for sleep and it works.
:cool: Di

im like diana i have no idea what sleep is.. i forget what that is like LOL i also have CFS so when i do sleep i might as well not have..
i have 4 pillows under head.i take lunesta for sleep and zanaflex at night to help stay asleep with the lunesta .. when it works its great but that is not very offten.. i tried to take the 50mg a night of that nortriptylne and was unconscience for 13 hrs so that isnt gonna work for me LOL so i take 25mgs at night .. i have had sleep issues since rsd.. i used to be the one that could sleep early then sleep all day.. i wish i was still like that

carrie

I had not slept more than 3-4 hrs in a row since 2007. As of last night, I slept 8 hours in a row, and I owe it to my new pain med Opana ER. Amazing..one dose..and out I went. Heck, last week I had appx. 9=10 hrs sleep..in a 7 day period!!!

I have Ambien CR; however, it does not work for me.

I felt so good this morning once I woke up..I left the house and had hair and nails done at the Salon. Hubby was shocked when I ask him to drive me..he was grinning ear to ear when he drove me..and then when he picked me up:)

Hi,
 

I was like Carrie, I use to take 3 hour naps in the daytime and then sleep for 12 hours at night. Now I don't sleep at all. I try. I can't sit up at the computer enough to stay on all night. I lay in bed and toss and turn all night. I have cronic fatigue syndrome so I have trouble sitting up a lot.

I tried ambien and other things to use to sleep but nothing worked.

I also have a cpep machine but I cannot get use to the tube in my nose. If I'm going to die, it might as well be in my sleep, I won't know it. LOL Sick joke, I know.

I get frustrated because I can't sleep. I have pillows all round me too but I can't get comfortable.

Ada

I use to have a horrible time sleeping. I like most of you would go days without any sleep at all. I use to take lunesta. One morning it hadn't worn off. Me and my daughter were going to Illinois for a wedding. It was 6 a.m. we stopped for breakfast. My first warning sign should have been when I feel asleep at the table. I was driving west bound in I-70 and feel asleep my daughter was already asleep. We woke to the sound of the car going through the median. It came to rest in the fast lane of the east bound traffic. We didn't hit anyone and no one hit us. I was so shaken by what had happened and the fact that I was facing the on coming traffic. I drove back to the other side and stopped on the shoulder by the slow lane. A semi saw us coming I didn't see him until I heard his breaks and saw smoke rolling from his tires (all 18). It would have hit my daughters side of the car. I remember asking God please spare her this is my fault don't let her get hurt. We made it to the shoulder of the interstate unharmed. We started crying and drove to the next exit stopped at the first gas station to examine the car. It was covered in mudd and grass but was still driveable. We finished our trip to IL. against my husbands demands. He was working his 24 hour shift at the firehouse and wasn't with us. Sorry for the long story I don't take sleeping pills anymore.

I do take .5 mg x 2 a day or Ativan. I take one before bed and it helps me sleep. On the nights I toss and turn I sleep in the recliner. I can't toss and turn as much so I sleep a little better. I try very very hard (some days it's impossible) not to sleep during the day. If my mind is working overtime and I can't sleep. I get up write all my thoughts down on paper (sometimes this helps). When the sheets feel like they are full of glass it made it very hard to sleep. I changed to Egyptian cotton and it has made a world of difference. If the pain is too awful I just ask God for his peace of mind to cover me and more times than not he answers.
Sorry this is sooooooooooo long!!!
Take care,
Sherrie

No answers are toooo long!
Please!
Keep them coming!
Then, we'll have a conversation...
Yea?

I hope so!

Pete
asb

PS Thanks, so much for the kind replies.... Now, you quiet ones!

Hi Dew, so glad to hear you and OpanaER are doing well together. Wow, 8 hrs sleep, I'm so happy for you! big grin. Ambien CR is worthless to me. I never get to sleep until about 4-5 in the morning and then sleep till 10-12. Vicodin really isn't working anymore. I really want to get out of bed and live better quality of life. Will see how my tests come out. A friend just found out she has bad liver, she's been on drugs for extreme pain for 20 years. Is on Morphine and Oxy. The best neurological institute here, Barrows just told her a pain pump won't work for her.
My Dr. represents Serequel Pharmeceutical Co. and we talked about me trying it for sleep. Maybe I'll try it. I'm getting my hair done Friday no matter what!. Have a great evening. Loretta

Hi Ada, Have you tried the little blow up pillows for your neck people use on airplanes. I put mine in a pillow case and blow it up about 1/2 way and it really helps my neck, which the RSD has gotten into from ruptured disk. Hope it helps, if you try it. Your friend, Loretta

Hi Diana,
Sorry yo haven't heard from me in a while, I'm just getting back to the land of the living. My laptop has been down, which I use in bed and I have to come upstairs to my husbands office to get on the computer. We are getting a new laptop this weekend. I liked your thoughts on the HBOT, No, I haven't used ityet. The clinic is going to open real soon, then I will. There were good thoughts about it at the RSDSA annual conference I went to a month ago. I met a lady that has one in her house like yourself, and she is off her meds. I got her number and will talk to her more about it. The conference will be available on DVD soon they said. There were about 135 of us there and the next day, was DRS. day. They said 50,000 new people get RSD every year in the US. I may ask my Dr. for Seraquel, he is actually doing a study for the Phar. Co. on this drug. He is into research and teaching. A man at the conference asked me to ask My Dr. if he would see him and my Dr. said he is just too busy.I know the 2 new clinics and schooling for the HBOT is keeping him extra busy. Hope all is well with you. Take care, Loretta

Hi Pete, yes sleep is a precious commodity, which I get little of. My problem is getting to sleep, no matter what I take. Get to sleep around 4am and then do sleep good till about 10-11am. Don't nap during the day usually. I'm trying real hard to adjust my sleep cycle, like a new baby. The neck pillows you blow up for airline travel really makes my neck more comfortable. Blow it up about half way and put it in a pillow case. Have a ruptured disk and RSD likes it there too. have full body 13 years following an operation. Let us know if you find something new! Take care, loretta

I used to crave sleep but only be able to sleep 1 night every 2 days. It was horrible! Now I sleep every night in bursts of about 3 hours. I usually go to bed between 10 & 12 PM, sometimes at 8 PM, even 6 PM. I wake up every 2 to 3 hours, usually the first 2/3. It's not set in stone, I can wake up anytime, actually. If I'm lucky I'll sleep 4 hours but usually I am awake for the rest of the night until it gets to be 5/6 AM, then I finally sort of crash and sleep for a longer amount of time, until noon and most times lately even beyond noon. It's like I'm in a different time zone. It's very hard to wake me when I crash. I have tried getting up in the middle of the night, avoiding the crash sleeping that I do, but it upsets the whole balance because I'll start falling asleep at noon if I do. I do tend to fall asleep during the day too no matter what. I have gotten very tired in the last couple of years or so, I don't know where it comes from. Maybe it's the lack of a good sleeping pattern.

I have always had sleep issues and with rsd it has become so much worse. I can go a couple nights with no sleep and when I do sleep I am up every few hours. I have tried multiple meds and self help techniques. I do know many nights I am woken up by my leg pain and how stiff I get. I can't be in one position too long or I really cramp. The problem lies though I can only lay like a mummy due to the legs or to get up and walk around. I also think at night my anxiety is at a peak. I have tried the relaxation tapes,watching tv,no tv,music etc nothing. Makes for extra long days. Many thoughts

Me too, Daniella, I can't get comfortable and usually wake up from the pain and/or from being in an uncomfortable position. Sleeping with two RSD legs and arms isn't easy. The arms are being treated and it's going well so far, fingers crossed, but it's still awkward. I also have developed lower back pain and have some damage here and there (luckily not in the spine). It's thought to be due to bad posture from the RSD. Sleeping is hardly fun, I know. I can relate.

Dew, I think Loretta created a positive post about Opana. I did show my wife that post and she said she may run it by her PD. The wife, half the time, falls asleep sitting up because of the pain, maybe Opana will help. Keep us posted on the benefits and pitfalls of Opana. Thanks

I don't move at all once I am in bed. I have once an awhile fallen asleep with my legs bent and an hour later I woke up that way but usually I lie like a dead person so to speak. It seems my reflexes are off. Anyhow on the posture issue I know that I compensate. My back went out from this issue for 3 months almost. I am trying to work on being more even with my body but it is hard when one body part feels like it will fall off from pain what does one do? I hope once I get better teatment to work on that. I always know that when my left leg is in a bad flare up that within days my right leg which is the "better" will act up cause I use it extra. Sending wishes

I don't move much either. If I'm in the same position for too long then I start to feel it and wake up. I have a special small pillow now, one that fits in between my legs like a wedge when I'm on my side; it's very soft and is made of the same materials as a Tempur mattress. It keeps my knees from touching. Before that it was regular pillows and it wasn't all that great. It still isn't but it's an improvement. I move at least three times a night, one side, the other, my back.

I liked Provigil & wouldnt have been able to function during the day without it when I was on Fentayl for pain. It made me so sleepy& fatigued. But I got used to it & needed a higher dose & its very expensive & then I changed pain meds thats for now not as sedating so I am trying to go without it. I also am lucky enough to at least have drug induced sleep. I take a low dose of Geodon at night to sleep. Its a life saver. If I dont take it I dont sleep. Recently it started not working or if I flare too much it wont work well. So the next rescription I fill will be increased a little. I build a tolerance to my meds something awful. It seems to take 6 monthes to 18 monthes depending on the med. I have another friend who takes serequel. Which is Geodons equivalant to sleep & its helped her too. Its something to consider talking to your doctors about. Especially if you have any depression problems.

Please, all. Be VERY careful with Seroquel.
It's an "Atypical" drug for schizophrenia, and BiPolar disorder, (as are some of the other drugs being discussed).
I've seen people "act out" as if drunk on these meds, and turn the entire world of the house upside down. Then, a day later don't remember a thing! I find (and I've tried them) them not worth the risk. Google them, and you'll see a world of attorneys with their dripping fangs out, looking for lawsuits.

There is a WORLD of common sense things you can do, to sleep well, instead of having a doctor just write a 'script for a drug that the companies literally "Push down their throats", and the side effects are incredible. Just the weight gain! I've seen/heard of 110lb + weight gains!
Please,, get a sleep test, rule out apnea, see if you need a c or bipap.
But make these meds your LAST choice!
You may wreak havoc on your family and your body!

It seems to me, that many of us "Forget", to worry about our pain when we're sleeping. We can let our meds run out by bedtime, but, that may be when you need it most! Point in fact: DEW.

Peace on all,

Pete
asb

sherrie
OMG is all i could say first off. and thank god that you and your daughter are safe!! i have taken that med on and off for years but im not usually out early in the morning .. and if i have to i wont take it that night,,, here lately i havent been takin at all since it really has done anything. and i have also started nortriptylene for migranes and that is helping me sleep some .. when i say some i mean like 3 hrs a day total LOL.. i also sleep with a huge old body pillow as for one i cant sleep on my pump which os on my right side so i have to lay on the left or on my back. 2 i just cant sit still in the bed alot of the times i end up on the couch.. i wish there was so miracle thing not even a med that could help us all sleep .. i bet we would feel so much better

its great to have this conversation with everyone

carrie

Hi Loretta,
 

I have one of those horseshoe shaped pillows and it doesn't help.

When I get this VNS out of me, that will help a little, I can't lay on my left side because it will stick out. It's square, about the shape of a poptart only thicker.

Then I have TOS and CFS so that isn't helping with my sleep.

Carrie, I have to lay on my right side or back and 2 out of 4 choices don't work for me. I can't lay on my stomach, it messes with my stomach issues.

Sounds like we should all just have some all night parties and forget the sleep altogether.

Ada

yea that sounds like fun.. for sure. because i barely do that period LOL and i know alot of us would pay to sleep for hrs at a time .. heck i know i would ..

carrie

As Shakespeare wrote "To sleep, perchance to dream...ay, there's the rub"

Always have had trouble falling asleep but then would sleep like a rock...house 2 doors down burned to the ground and I slept through all the fire truck sirens and noise. But since RSD it's gotten worse. If, like today, I have meetings throughout the lunch hours and never get my 1 hour nap, I get over tired and may not sleep until the morning even taking an extra Lunesta. Most of the time it's the pain that keeps me from going to sleep and waking up throughout the night. Get the shakes when I get up in the morning but not sure which medicine is causing it and it goes away once I'm fully up and awake.

One Moment Can Change Everything!

When I was first diagnosed with "probable RSD" from repeat right rototar cuff repair surgeries last June and sent to a PM doc, he started a series of trigger point injections. Over a period of a couple months he repeatedly injected my upper back, cervical spine, SCM muscles and the back of my head. The injections consisted mainly of steroids and marcaine. With the onset of winter, my RSD spread into all those areas, and as a result I suffer from terrible headaches and can't lay down on my head except on the sides with my face smashed into a cervical pillow (not good if you are trying to avoid wrinkes!). So trying to sleep REALLY sucks.

I take percocet and Ambien CR and Soma when I go to bed. I wake up often. I average maybe 6 hrs a night, but I do get perhaps 7-8 hrs total sometimes. On a low pain weekend day (few and far between anymore) I used to sleep 12 hours.

Sandy

As you all wrote sleep?? What is that... I dont sleep at night at all and can sleep during the day for 4 to 5 hours but no nearly enough sleep... i have always been a person who needs me sleep lol... Reccently my doc gave me a product called Walora FAST2SLEEP... it is purley herbs...melatonin,piper methystictum and huperzia serrarate... I know i slept those wrong sorry... but it works like a charm and maybe talk to your doctor or i am sure you can get it online?

The first time I complained of insomnia my doc prescribed tizanidine. I hadn't even noticed that I have a very fine high frequency tremor that kept me awake. I also take seroquel which helps sleep.

sleep
 

Hi Pete,

I really don't sleep at night. I do take klonopin 1mg at night, but it doesn't do much good. The one I have noticed since being dxed with RSD is that I sweat a lot especially at night(which I find very annoying). I also have a hard time find a comfortable position to sleep in. Pete have you tried Melatonin. Good luck:hug:

Kate

Just looked on internet...correct company name is Waiora. How long have you been taking? Have you notice effect lessening over time?

Sleep
 

Hi Pete,

I wanted to comment on something is one of your other posts. When I can sleep, If I sleep in the same position to long I notice my left leg is always really stiff and hard to move. My RSD is in my left foot. What can I do to avoid having such bad stiffness? What do you do? Also I have noticed for a few weeks my left hand will cramp and be stiff and hurt, and spasm. Do you think this is a sign that the RSD has moved to my left hand? Have a nice day Pete:hug::hug::)

Kate

No i havent noticed any reduction of effects over time.... about 3 months... they work pretty well... Maybe it will help you.. Sorry about the spelling it was late and couldnt remember exactly...

Jacquelina

Hello Kate!
Nice to know you!

Yes, I think that your rsd might, just might be spreading a bit. It "tends" to do that, but I'm no doctor!
Ask Him/Her!

This 8 hours of our day, is so imperative, and impossible with RSD.!
I can't imagine going back to being "normal".

You sleep "well", and then ya get stiff, by staying in one position.
Last night, I fell asleep with the A/C on, AND the ceiling fan, why?
Because I can get all kinds of "abnormal heat" built up when I try to sleep.
Heck if I know why? I drink ice water, it helps just a bit....

But, I woke up today, like I was in a body cast! My friend was gonna take me food shopping. I couldn't do it! My Arms were in so much pain! (tos).
I had trouble moving at all. You all know what that's like.

Still, he visited, which, I appreciated very much, and I'll do the shopping another day.
Thank God for milk and Cereal!

But Kate,
Maybe you can rub on some Mineral Ice when you wake up?
The BEST thing to do, (and it hurts), is to MOVE the painful parts!
It's "Use it, or Lose it".
I hate to say...

So, wake up, take your meds, and start moving, as best you can!

PM Me,!

Best of wishes to ya,

Pete
asb

Mineral Ice
 

Hi Pete,

What is mineral ice and where can i buy some? Does it help you? Hope you have a nice day.:):)

Kate

Kate
"Mineral ice" is just an over the counter gel, that gets warm, then cool. It's main ingredient is "Menthol", so it has that smell to it.
Any drug store, or even a big super market would have it. (Look near the "Ben-Gay" type stuff).
Some folks may not like it, you can get a small jar for about 7-8 dollars.

It does help me in certain spots, a stiff joint for instance. Or, if my hands get stiff.
It's only a topical treatment, but it may give you some relief. Just another part of my "war chest".

Feel Good!
:hug:

pete
asb

That stuff (menthol gels) enhanced the pain in my case. That's why I immediately switched to regular anti-inflammatory gels, the kind that don't heat up or cool down the spot where you rub them.

Marleen,
What would they be? The anti inflammatory gels? Are they the sports creams?
Any name brands that you like?

Thanks,
Pete
asb

I used Flexium spray, Voltaren gel, known brand names in my country. I don't know about Flexium spray, but Voltaren gel should be known in the US. Those type products don't chill or heat up the spot where you put them. They just work as anti-inflammatories. You have 3 types, chilling, heating, and regular anti-inflammatory gels.

Flexium spray:
http://www.farmapolis.eu/product/296/flexium-spray.html

There was another gel from Pfizer that I used for a long time... it didn't heat up or chill the spot either, forgot its name... damn. Got it: Feldene!

Thanks Marleen!

Great Info!

:Tip-Hat:


Pete
asb

update on Dew's Sleep patterns
 

I have noticed in the last 2 weeks, while in AZ, my 8 hr sleep is getting smaller ..like 4-5 1/2 hrs at a time. I think this is a good thing as I don't want to have to "catch-up" on pain meds,again!

Some of you may remember the all niter that I have had to pull on 2 occasions while visiting my sis in AZ. My PM doc told me that he was going to increase me from 10 mg x 2 per day, to 30 mg x 2 per day on 5/26/09, which is my next PM appt. The first week on Opana ER was blissful sleep. I needed it so bad.

I have learned to take a hot epsom salt bath before bed. It relaxes me, and my muscles and joints feel so free in the water.

Sweet Dreams to Each of You:grouphug:
Dew

Hi CRPSbe, Sorry you have sleep problems too. It's tough isn't it. How do you know the RSD isn't in your spine? Any tests? I have very painful lower back probably last two years. Have full body 13 years. The lower back is really painful, especially if I try to do too much house work, like I did yesterday getting ready for company. The back pain flare lasts a few days.
Hope you have a good day. I enjoy your posts. loretta:)

There's no talk of "RSD" being anywhere in my back. I don't feel it is RSD (whole other sensations that I'm feeling in my back).

My spine was damage free in 2007, when X-rays were taken, though I have considerable pain in my back. It comes and goes, but is mostly there and mostly in the mornings. 2 years ago, my back just locked into place, I had this hollow back posture and the pain was intolerable. I could hardly move. Excruciating pain. They thought it might be Bechterew's disease (ankylosing spondylitis), but the blood test (rheumatoid factor) was negative, and there was no damage to the spine (yet), so no diagnosis could be made... so far it's thought to be bad posture because of the RSD. There is damage where the cilium bones go to the sacrum, something about sacro-iliac joints, AFAIK. I do know that I have pain where my back goes to my buttocks, especially on the left side, HURTS LIKE HELL (bony, gnawing, pain), sometimes inhibits me to get up. Sitting down is hardly ever comfortable. I was told by the doctor that if it does turn out to be ankylosing spondylitis (that means that if with time damage does occur to the spine), then in that case it's a very slow form. It's not really reassuring when your back keeps aching... but hey, I'm no spring chicken anymore, am I?