Sleep stealing culprits

Sleep! Is it as hard for you to get to sleep some nights as it is for me?  There are nights that I can not hold my eyes open by about 2 am.  :)  And then, other nights, I try the same things and stay awake half the night! 
I've talked about wind as a sleep stealing culprit .  What other things are culprits in your world of sleep? 

Caffeine can steel my sleep easily!  But, that's a common issue.

Another culprit to my sleeplessness is:   a social event late at night!  I guess I should expand on that one.  I have noticed that if I am out socially and I get 'riled' up, as in laughing, carrying on, talking a lot, I guess dancing would be among them if I could/would dance.  Going to a movie with my husband doesn't usually bother me because its not much different than watching a movie at home.  But, if it were a loud, action filled movie, it may keep me up.
A concert would definitely bother me!  I Have been to a total of maybe TWO concerts in my 15yr life w/RSD.  It was one of the activities that I cut out when I was first dxed to keep my pain as low as possible.  I have found it painful and the after affect pain is worse.
  Any kind of travel also causes sleep deprivation.  I wonder if I should get some sleeping pills for those nights I really need/want to do something and know it could keep me awake.  Doesn't matter how tired I get because of said activity...

Why would this happen do you think?   IMHO...I believe that our nerves get 'fired' up whenever we are active.  Do you notice it being harder to 'settle' down after being really active?  You are so so incredibly tired, but still can't sleep!  I have found I must relax IN BED for a long while before actually getting to sleep. So, why don't I go to bed earlier, take my meds, read or watch tv in bed till hubby comes to bed.  Hmmm....cause now we don't have cable in our bedroom and those dumb shows I want to watch are on till 11!  Thats typically why! But, I do hope to work my way earlier and earlier.  Right now, I fall asleep about 2, sometimes 3. On a rare occasion, I can fall asleep before 1am!

 Oh, and what if I go to bed early and having forgotten to put the dog out one last time?  I get up, go put him out and the nerves are starting to rev up again and it takes even longer.  I hate when I'm just about asleep for a nap and then must get up again!  The nap is sometimes a lost cause! 

Thanks for listening...and if you have anything you have figured out as a sleep stealing culprit please share it with us.

Oh my aching legs

My legs have been aching lately.  It seems like all the time anymore.  I lay in bed the other night and oh did they ever hurt.  Not really painful...just almost painful. So terribly uncomfortable that I couldn't sleep.  I had to take a bath to relieve the pressure on them, relieve the...ok...pain.  It worked. I wasn't in the tub for long when I was falling asleep.  I wish I had a blanket that I could just wrap around me that would alleviate this pressure! Wouldn't that be wonderful!?

Have you noticed that the changing of the Barometric Pressure bothers you?  I can get all kinds of issues that come along with the changing of seasons esp.   Like my leg aches!  Or, my whole body will ache! I'm noticing that it's a lot less of a problem since I've been on Cymbalta.  They say that's for Fibromyalgia, but one of the pains I've suffered from has been Fibromyalgia-like.  When I saw their commercial that explains Fibromyalgia it all clicked why some docs tried to say that's what I have.  Because it's the over-firing of the nerves in your muscles!  Makes sense, doesn't it, that our muscles ache like that too since RSD is the over-firing of  those same nerves (sympathetic) but for us, it's muscles, blood vessels, skin, organs, hair...

Anyway, to help when the barometric pressure gets to me, I hit the tub.  The water has to be 95 degrees or more so just going to a pool, etc doesn't really help.  I so would love to have a hot tub! With a tv!  oh what a dream! I used to have a soaking tub (and tv)which was mighty helpful!  We were going to put one in our new/old house but have decided with finances the way they are to hold off.  So this tub will have to do! 

To get the water up high enough in the tub to actually cover oneself and help:  I sometimes turn the water outlet cover upside down so it gives me a few more inches of water.  I also have a plastic outlet cover that does essentially the same thing.  It's easy to pop onto the outlet and off again to let the water out. 

I also found out yesterday why people with crowns shouldn't bite down on hard caramel!  Has anyone else had a lot of dental work since having RSD?  With the dry mouth from meds, etc my teeth have started rotting away!  I had a mouth of silver before RSD and now (granted I am getting old and so, this may have happened anyway) I only have one or two silver fillings left!  That's a treat!   But, I have recently learned about a gel that one puts on your gums and tongue and it keeps them moisened for a long time.  I keep it in my purse and pull it out when needed.  It's called BIOTENE.  Check that out!

Proverbs 21:23



Those who guard their mouths and their tongues keep themselves from calamity.

Electric buzz

I wrote the other night about the wind being so awful...it is tough to deal with and the doctors all say their offices are full the day after a windy night. It causes most RSDers such discomfort that lots of people run to the doctors. I'm not saying that they need not go; however, I have never gone to the pain doc except when I have an appt. I have never felt it necessary. I tend to believe that the RSD is something that takes my common sense and knowledge of my body along with the modalities the doctors use to keep me stable. There are factors of life that I encounter; sound, light, vibration, wind, weather, commotion are all things that can make my pain worse. These can all cause flairs. I have found that what I need to do is ride them out and do what I can to alleviate the pain myself. There are a lot of times that I have to limit my activities, take a bath, keep myself calm and quiet, etc and I can get myself out of a flair.


For windy nights and days when the barometric pressure causes me pain, I go into the bathtub. I had a soaking tub in one house and would actually sleep in the tub. I found that under the water, the pressure was relieved, my body would relax and I fell asleep. I cannot fall asleep too often in the tub anymore, but I do get groggy enough and warm enough to go back to bed and sleep.


I also have a set of those 'AS SEEN ON TV" leg air wraps that blow up and put pressure on your legs, it cycles on and off for about twenty minutes. I'm not sure if it’s the pressure on my legs helping the pain or that the noise of the pump lulls me to sleep. Whatever it is, I love them! I got them when they were being sold on clearance for $5 at a drug store! Ha-ha!!! My daughter thought I was nuts but man do they help me out! he he! I love when those clearance items that are such a good deal that I cannot pass up are actually good deals! Cause, face it, how often are those good deals actually worth anything?


I digress... anyway...Yesterday; I was lying in bed during an awful bit of wind and actually felt an electrical buzz all over my body. It didn't hurt, just felt like tiny little zaps, on almost all the nerve endings of my body. Weird, that was a new occurance! I also had a migraine...cannot remember if they coincided or not. I did one of those little urps (my dad's word) where you think you are about to throw up and then, it goes back down? I had a phone call soon after that happening. When I got off the phone, I could see those jagged intense light that I see when I get a migraine..., which explains the urping up I had done. This time I was able to keep it from getting really really bad.


I cannot figure out what’s been causing these Migraines I‘ve had this year. A long time ago I got them. Back then, there had to be a few 'ducks in a row' for me to get a migraine. I will have to do a little sleuthing to figure out what are the ducks that have to line up for me When I used to get them, one of the ducks was that shampoo line 'Aussie". The others were: I had to be over tired, overheated, have pms. My friends all stopped using Aussie, esp. the hairspray around me.  Wasn't that so sweet of them?! It still warms my heart to think I had friends willing to do that for me.  At the time, Aussie was THE product to use!   


It may not seem like a big deal to us when we do a good deed like that for someone else, but it can be a big deal to them.  l still remember that my friends were willing to do that for me and it was almost twenty years ago!

Never underestimate the beauty of a good deed.


Hebrews 10:24


And let us consider how we may spur one another on toward love and good deeds.

Wind

What a gorgeous day we had today, well, guess that was yesterday. It was another windy day.  I totally enjoyed the gorgeous fall color display my G-d has displayed for me! He gets out his paint brushes and colors the trees in such beautiful hues! Wait, I'll show you a picture of what I'm talking about! And then, if that's not enough, His setting sun sends these trees into a riot of golden glowing color! It's absolutely gorgeous!

  As a person with Reflex Sympathetic Dystrophy, and that would be me...wind can figuratively blow my body back and forth and I could fall off my carefully laid out very fine line. I imagine I look at wind about the same way someone way on a two story tight ropes between two buildings.

It doesn't matter how exhausted I am on a windy nights, I usually will lay awake all night and the pressure on my body makes me weak and achy. My pain level rises and I don't have the energy to get up and do anything constructive.
Windy days, however, I lay in bed in the late afternooon.  I usually have a vague memory of having woken up several times  during the day only to drop right back off to sleep.  and wonder why I am so very tired and weak.  Some windy days, I just lay in bed for hours doing absolutely nothing because I just am too weak to care about anything. 

I've talked to several doctors about this phenomenon and they all agree that the day after a windy night is their busiest day.  Many people can't handle the pain that the Wind causes in their body and they end up going into the Dr's office to see if he can be of help.  Mostly, they just need the support the doctor and his employees may give to that person.  I have found that if I just ride it out, maybe take a bath or two, I will be much better in a few days.   

I praise the Lord for HIS Comfort because without it, I would not be able to cope with this syndrome.  And with His comfort, I hope to be able to comfort others with RSD/CRPS

2 Corinthians 1:3-5


God of All Comfort


3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too
 

Day to Day with RSD

UGH!

That's my favorite word these days it seems. 

Life with RSD is so...so unplannable. 

I am exhausted because I have totally overdone it (life w RSD) the past few weeks.  I won't bore you but I am left with an incredibly weak feeling in legs and arms.  I don't want to do anything but sleep and sleep I do well! 

My hubs even did the dog walking today for me as I just didn't have the energy to do it myself. 

But, I know that tomorrow I must walk the dog with him for several reasons...the dogs...my legs...and me.  

The dogs do not like leaving me behind. and we got our dog (we  also have a foster dog at the moment) to keep me moving. 

My legs will not get better unless I walk some, more rest than needed and they will get worse! 

And me, I get lazier the more I sleep and not walk. 

You see, we RSDers (CRPSers also) walk a tightrope between doing too much and doing too little. 

I did too much and fell off of the tightrope.

It was a wonderful fall tho, doing things I needed to plus things I wanted to do, but they were just too close together for my tightrope walk! 

Now, if I do too little in my climb back up to the higher height tightrope, I will also fall and maybe not so softly the next time. 

Confusing?  Yes! 

Hard to find that balance?  You know it! 

Gotta go...too much typing and my hands start hurting!