Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-06-2009, 07:20 PM #1
AintSoBad AintSoBad is offline
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AintSoBad AintSoBad is offline
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Default Sleep Issues

I've just gone over a couple posts/threads here, and it seems that lot's of us have Sleep Issues.

So, I merely googled, "Sleep".

And, was rewarded with some good info.

I think it'd be a good idea for anyone who is suffering with sleep issues, (and those who are dropping things, or some other odd symptoms), do this too.

Lack of sleep, has, and can cause, SO many symptoms.
WebMD had a great little "series" of sleep disorders and their side effects.

I suggest, anyone with RSD, Chronic pain, or head trauma check this out.
That is, Google, = Sleep.


I've had a sleep test, and I'm being told to have another, since it's been years.
I use a CPap machine. Biggest difficulties with it are,
Remembering to put it on!
And, cleaning it constantly.
But, it will give you back, more than you take!

I used to just doze off, anywhere, anytime, and snore like a Lion.
Then, I was told, by a Doc friend, who had stayed over for a weekend for a visit, that I have Apnea. Sleep Apnea is very dangerous. You can have a heart attack, and be gone. (I was awoken by this Doc, like the house was afire, thought I was dying, due to my gasping for air! And, you can't put this on your spouse to simply notice, unless you tell them what to look for, and they're going to be awake). Apnea is not the same as "Not Sleeping". It's more like you stop breathing while asleep.
So, please do take this seriously!

My Neuro explained to me, what was happening to me was, I'd fall asleep, then the apnea kicked in, and, my Oxygen went low. My brain sent out a signal (I think it's called myclonic, not sure), to "Wake Up"!
You're dying!
So, I'd pop up, and be wide awake, with a Very Dry Mouth! (I used to go to bed, with a quart of ice water on the side...)

So, even now, if I fall asleep forgetting to put the mask on, (because it can be awkward), I'll wake up in an hour or so, and grab some water, and put it on.
A Cpap (or BiPap) needs to just become part of your sleep hygiene.

Hope you all have some good restful nights!

Pete
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Old 09-06-2009, 09:38 PM #2
love2laugh love2laugh is offline
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love2laugh love2laugh is offline
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I agree that having a sleep study is a good idea for anyone who is having problems with sleep & severe fatigue......... However, sleep apnea is not always the cause of those. There are many causes for fatigue and sleep problems.

I had a sleep study a few years ago because I was having severe exhaustion to the point where I was almost falling asleep at work and school (and at times I was). This all in spite of getting a full 8 hrs of sleep at night.

My neurologist suspected it was fatigue from my anti seizure medications and daytime & nocturnal seizures--- hence my body and brain were not able to get much true rest, BUT, he wanted to do a sleep study to rule out any sort of sleep disorder.

The sleep study was uneventful-- I feel asleep within 30 minutes, my O2 (oxygen) sats were perfect through out the night and no sleep apnea. The "day time sleep test"/Nap study (MSLT-- multiple sleep latency test) that tests for Narcolepsy, showed I was fatigued and I fell asleep during one or two of the naps, but that I didn't have Narcolepsy. So, essentially, the sleep studies just confirmed what my neurologist and I suspected-- my fatigue issues were due to medication and seizures.

So, I was put on a medication to help with the fatigue and am still on it on a PRN basis. Not being able to function was NOT an option.

Now I am dealing with slightly different sleep issues (poor pain control combined with seizures and meds), but we're working on it.

The point is, please talk to your doctor about it-- I know how frustrating it can be ! There options and things that can be done, but if you don't let them know and let them know HOW its effecting your day to day life, they can't help you.

Hang in there !

L2L
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Old 09-06-2009, 10:12 PM #3
bobber bobber is offline
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Hey Pete
I kinda of figured you had a sleeping problem , along with a few others on this site,,because of the message has the time stamped on it and sometimes some of the post will have a latenite sibmit time on it,,,,,,,my brother and good friend of mine both have sleep apnea,,,one good thing [other than the mask in which my friend doesnt wear,,but my brother does,and he hates it,but wants to live,,,,]] is to lose weight,,losing weight will reverse it usually or cure it ,,or at least tame it down that the mask isnt needed,,,talk with your dr..im not saying your over weight,,but i know how I get when im not active and gain a few pounds,,i snore,,when im at my ideal weight [185 @ 5-11] I usually dont snore and sleep good,,but your right,,it will make you stop breathing,,quite a few people have died like that,,ussaly being over weight will trigger apnea,,[theres several pro football players[Linesmen] that are fighting it],,,you gotta be carefull,and its hard to stay in shape or even feeling like exercising when were sick,,,,,i hope your having a good day pete,,and sleep well my friend, although when it rains it pours,,,God is with you and watching over you,,,bobber

Last edited by bobber; 09-06-2009 at 10:45 PM.
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Old 09-07-2009, 11:08 PM #4
SBOWLING SBOWLING is offline
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Hey Pete,

I agree with the sleep study. My husband stopped breathing and jumped out of bed one night. I had been trying to get him to do a study. I very calmly said if you don't call the doctor and schedule an appt. in the morning I will do if for you he called. He will tell you if we travel and he forgets his machine his quality of sleep is so poor he can't wait to get home to his machine.

However, if you do the study and you don't need a machine. There are other issues to look at.

We all take lots of different meds to help us with RSD. They can interact with each other and cause sleep issues. Because I have trouble with my heart (beats too fast because of RSD) the medication I take for it is perscribed by a different doctor than my pain meds from PM doc. and then there are the medications I get from my GP. So it's important that all your doctors know about all your medications. I keep my on a spreadsheet in my computer and I print it out and take it to my doctor appt. and when the nurses ask about my meds we check my list to the chart. Keeping a spreadsheet on my meds isn't something I'm proud of it's just become a part of managing my RSD.

Bobber is correct on the diet thing. Our foods can have a negative reaction with our sleep. I know for me I have gained too much weight over the last few years and my husband complains of my snoring. It was never an issue before the weight gain. The weight gain is due to decreased activity (my RSD is fullbody), some of my meds. and poor eating habits when I am bored or stressed have also contibuted.

Exercise is important. For RSDer's it's not always easy. In the water is best for me. When we are in the water we are weightless and we have less pain. I like to water walk.

Sleep is very important to our bodies. When we sleep our bodies renew themselves for a new day. If we don't sleep our concentration is off (it's already affected by our medications so now it's worse) our energy level is low (My RSD affects my strength and endurance so now it's even worse).

Sorry I am rambling and my spelling and grammar are bad. I hope what I have tried to say makes sense. I had a very enjoyable labor day weekend with family and freinds. I played so now I must pay with pain so I can't sleep.
Take care,
Sherrie
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Old 09-09-2009, 07:57 AM #5
bassman bassman is offline
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Apnea is a very serious problem, but I agree that you need a study by a Qualified sleep clinic. Get a referral from your doctor, don't just go to the "cheapie" place in the classifieds that is just trying to sell you something you don't need.

The causes for my sleep problems are:

- General fatigue because of meds and some of the disorders like RA, that will cause fatigue by itself.

- Pain, pain, pain. Most nights, it will wake up after a few hours simply because a flare-up is keeping me from being relaxed. It is hard to rest and sleep when your foot is in a vise.

There are probably a lot of us here with that same combination.

However, first make sure you don't have something more complicated and dangerous, like Apnea and other, similar disorders.

Mike
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