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| | From:  annie570111 (Original Message) | Sent: 2/8/2008 11:08 AM |
Hi there to all....We are all dealing with rsd in our own ways n coping n searching for answers...Thot That I would let you all know what is been happening with me...As newbies n maynot know that I am dealing with injuries left behind disabling me for lifetime ,,, with rhumatoied-osteo n rsd and ms and fibro in upper region of body.... All caused from the accident. Belonging too some other groups that I am reading on boards...Freinds that I have made thru these ten yrs of learning too cope n deal with,,,,,Why in Hell,,,, does the nitetime havetoo make it all worse n harder too cope????Seems that all us RSD's have a ruffer super harder time of sleeping??? all going 3 or 5 or 8 nites without sleep???????? One conclusion that I am coming too ,,,,, we take so many meds that is suppose too make us drowsy...They go the opposite on us...And secondly,,, the pain of the rsd makes us so worn out that we cannot rest or sleep...pain is so wearing n draining us physically n emotionally that our bodys donot and cannot know what is suppose too do anymore!!!!!! With all the issues that the pain is creating in our bodies,,, our bodies are lost in the middle n cannot function...Reason for the sleeplessness,,,,,, eating,,,,,resting functioning....Pain issues....I am hoping that this makes some sense so that we can start searching for answers tooo stop this visious cycle!!!! I for one,,,,burn candles of aromatherapy. I try to lay quietly writing too rest. journaling my days.. n happenings n pain levels n what n how is affecting me. Or writing new recipes..... Or writing to come up with new recipes....Too help come up with new recipes... As we all do know it is hard to focus think or organize when flares are at worst.. Past five months is not been any ease doingswith all that I have been thru!!!!! I am one who knows how draining pain issues are ,,,,, going too fix a bowl of cereal can be so tiring getting a bowl out is hard one too accomplish to go back too bed n stay for another hour....Being able to force a issue is hard to accomplish. I really fully understand what n how these issues are so hard too achieve anything.... Hugzzzz n more hugzzz Really do care about each one of you and all that you are going thru.... Annie |
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Hi Annie,
I have problems more at night that during the day, I lay in be from sometimes from 10pm to 3am just because I dont want to go to sleep, or cant...I know that if I do fall asleep that I will just wake up to another day of suffering. Im tired, I just dont want to do it anymore.
Frank |
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My dear,,,,,,,,,, I forget about going too bed at nite ,,, most of the time.... Cause I know that sleep n rest will not come.... here lately,,,,,, I again am trying too lay down n rest if not sleep.... Heheeee me bad,,,,,, put roommates new mattress on my bed,,,,,, Now have slept for four hrs nite resting also... sure feel better with the rest.... sleep is helping also ,,,, now!!!! Am with another infection again.... Not good at all.. upset tummy again,,,,,,,,,,, hell when will this all end????? O well,,,, such is my life!!!!!!!! But seems that everything gets worse ini nitetime.... At least we know that things will get better sometime.... We just keep looking for it..... Frank ,,,, we know that quitters do not get anywhere!!!!!!!!! We get tired of pushing n want too quit....... I know that I sure do..... WE CANNOT!!!!!! HUGGZ my dear!!!!!! Annie |
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Annie, I, too, have trouble with sleep. A side effect of rsd is difficulty in getting to REM sleep. I would toss and turn, and put myself into more pain. Now that I know this, I think I am a bit less stressed about sleep. I guess I feel less pressure.
Here's my story: I have rsd in both my hands and wrists. I am not absolutely sure how I got it. All the drs I have seen poo poo my thought of how I got rsd. I think it came from pulling on some paper to get it unstuck from a machine. I had had C5&6 fusion surgery just a couple months before and was still in the brace. But really, I figure it doesn't really matter how, it matters, just that I have it. When I was finally diagnosed 4 years ago, it was on my birthday, I thought it was a wonderful present; I now was out of pain (stellate ganglion block that day) and I knew what it was, so now it would get cured. HA! 2 days later it all came back. Because it is on both sides the blocks can only be administered to one side at a time. The side that doesn't have the block in it kick starts the side with the block.
Anyway, I have been through more blocks and different kinds of blocks, SCS, and now just meds. So far the meds are pretty consistent for a normal, non stress, warm, low movement day. If those days happen I can handle them. The other 364 days I need rescue meds. That's it to my story. I am often reading on this site, I don't post as much as I should.
I hope you are having a low pain, good movement type of day! |
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Hi there Robin...... Blocks surgery all affects or can make rsd worse or set off slares of it... Not any fun.... Thanks for making the post... Really apprecaite the input...The more that we all put in the more help that we can all get! No doubt of that at all. Sooo good too know that we are not alone. Sleep.... No matter what or how I try does not come... been up now since midnite on a couple of hours.. Now is 11:30 am...... Pain n spasms are severe. Weather,,,,,,, temps are 40 degree changes from nite n day did not think that would happen here.... Hope that it does not happen often.... Geeee,,,,,,, they are not fun..... Making for upset tummy.... I was getting some sleep n rest... Suppose too warm here the next few days!!!! Looking forward to that.. I knew yesterday something was going to happen,,,,,, When unstable ,,,, trying too fall happens weather is going too go pretty whacky,,,,, n when temps are unstable with ,,,, like these 40 temps,,,,,,,,,,,,,,, My body really goes pretty whacky...... For certain much much less sleep!!!!!! Me wants rest!!!!!!! Huggzz Thanks again for posting!!!!! Annie |
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| | | From: MaryMac | Sent: 2/14/2008 10:36 PM |
My gosh I'm so shocked I thought I was the only one on this planet first of all that had this problem & 2nd I won't lie there are nights that are such hell I wonder why I'm alive.. It's truly those times I muster up so much emotional strength to just keep pluging along until tomarrow....Is there by chance a "chat room" for us in seathing pain from 10PM till dawn or till one is so exhausted we finally can dose off? I'm practially 100% alone except for a cat and 2 british boxhead labs... Just a quick chat withsomeone in these same shoes would be a "godsend" thanks for all who feel this and listen.... Sincerely Marymac |
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| | | From: Tami62 | Sent: 2/15/2008 2:50 AM |
Hi MaryMac, Please know that you are so much not alone. We are here for you. There is a chat board up but it is not a very well used one just yet as I am still working out the kinks and trying to get others involved in using it. I am also trying to find some other chats to add so if you will hang in there we will all be able to chat more. It is still fairly new and may not always be someone in there. You can add me to your list of buddies if you would like. [email protected]I am an assistant manager. I don't have RSD but my husband does and I am still working so I have limited time on the computer in the evenings but I may be able to help introduce you to some of the other members who are online alot in the evening and the day time. I hope to talk to you soon. Tami62 |
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WOW there is quite a few of us who dont sleep normal lol. I have to sleep sitting up due to my lower back hurtung so bad so i sleep on the couch and my poor hubby has decided to sleep out here next to me thank goodness we have a new sectional so we gave my mom our bedroom she has moved in with us to help me with the kids and cleaning so my hubby can continue to work and the house work and the kids get all they need. It is working awesome with mom here. Back to the no sleeping i pretty much just cat nap through the day and night whenever i can sleep i try to. My meds help quite a bit but if i try to lay down my lower back and hips hurt so bad i see stars so i just sit up propped on pillows my end of the couch the kiddies and mom and hubby call it my "throne". I have had RSD since March of 1994 and i also have fibromalgia for the last 2 years. My RSD is wide spread along with the fibro i have alternating severe pain in all my limbs and lower back and hips its very frustrating and down right maddening sometimes. Thank you for listening to me vent.. Stace |
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Hi there my dear Mary,,,,,,, do you have yahoo.. or msn messenger??? I am signed into them all the time.. Usually up all nite most all nites.. We really like yahoo alot better. MSN is always giving fits to us. Annie5769020 @yahoo.com is my id. Be happy too chat when ever I am around. No matter if I am on busy side of of things. Always happy to chat when around. I will answer as soon as I get message if I am away, I promise. I have been trying too rest in the evening with a new schedule of having roommates now. Not working too well for sleep... Still 2 or 3 hrs a nite is usual... WOWOW I did get some rest earlier in week... Body was wored out not understanding that different weather was moving in yet again.... Funnn funn for me.. Warmed up here quite a bit,, and started raining here at same time. Was little more than 42 degree temp change.. Not funn!!!!! But,,, seems that our bodies go have to slow down n rest mode,,,, then all start talking back too us pretty loudly!!!!! Grrrrrrrrr....... My dear Tami is working on the chat board for us... She almost got it tweaked up for us,,,,,,, Almost,,,,,,,,,, then the chat will be there for all of us.... I will be happy too accept anyone on instant messenger.... Not a problem one... Have as pain free weekend as is possible....... Huggzzzz!!!!!!! Annie |
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My dear ,,,,,,,, I have given it quite a bit of thot,,,,,,,,, if any of the drs had too live with this as is meds and pain n anti-depressants ,,,,,, whatever,,,,,,, answers would be coming alot faster than are.. No doubt of that one, period! We just keep on going till answers are found. Hey so glad working out with Mom in house staying... That soo nice too have something that one can get comfortable on.. I will not ever be able too set in couch or most chairs or recliners ever again... The types of injuries that I was left with!!! Types of pain I live with just keeps me moving or board stiff... Body is just worn out. And past resting ,,, me thinks. A fusion in back from T-11 to S-2 also.. That is been done 2 times... 3rd time here soon again... All in ten yrs. Not fun!!! This one is going to be different.. scarey cause not understanding what or how is going to be done!!!!! Rite now adjusting too new roommates in house also.. Be super great n having things alot easier here also now... This I am looking forward to!!!!! Have a great pain free weekend as is possible.. Hoping too see yah all posting on boards alot more!!!! Huggzz Annie |
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Instant Messaging with Members of this group for support in my opinion would be a great idea. I'm a newbie to the group too. Frankly, like many of you, I've been going through hell the last year and some change looking for a diagnosis which eventually 9 docs and a whole wrath of procedures, narcotics, and attemptsof curing my chronic back pain, as a result of a car wreck almost 5 years ago I came to the fine diagnosis at a doctor that I consider my miracle doctor and life saver, who told me I had this disease RSD.
I use yahoo and MSN primarily. My yahoo ID is [email protected] and my msn ID is [email protected]
Please, ANYONE who would like support, or just to talk about RSD, or the awfulness of some of the side effects and results due to the condition, feel free to message me. I'm right here with you, and I'm not alone now, so neither should you be.
A side note - I'm always "online" and logged in, so if you message me right away and I siome how don't respond to it right away, don't worry...this means I'm either at the doctor, sleeping, or in too much pain to situp for any period of time.
I can't work as a result of the RSD affecting/spreading into diff parts of my body, so I'm here a lot! I look forward to others sharing their IM info, and I hope to talk to a lot of you young, old, new to RSD (as I am too), because I need support and help just as much as you do dealing with this.
We're in this together, and lets stick together and be strong everyone!
Warmest Regards,
Phil Perrin |
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| | | From: Tami62 | Sent: 2/16/2008 10:47 PM |
Hi there, I added you to my friends list. I also wanted to share mine for anyone who wants to add me on theirs. yahoo ID is [email protected] can't remember my windows live ID but when I find it I will add it here. Tami62 (one of the assistant managers) |
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Hey Phillip, I added you to my yahoo friend's list. Nice to meet you and welcome to a place of friends. On my yahoo I usually stay invisible. But I will respond if I am online. I've had RSD for a little over 6 months now. I fell at my job and have never been quite the same again. I to have searched high and low for friends or anyone I could talk to about RSD. Knowing everything the medical field can teach me about my injury is of absolutely no help when they continuously think I'm pretending or lying. I've come full circle twice now with the Dr.'s. Some admitting things and some not. Anyway, I have been lucky in two things. 1. To have found this site. 2. To have been given the privilege of enjoying Tami62's chat room. When the chat room was first up for me to use. My mcafee wouldn't allow it. But Tami62 now has this really cool toolbar. And with one click. I'm in the chat room. It's awesome. Hope to see you soon my friend. Fire |
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| This message has been deleted due to termination of membership. |
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HI there Dear....... Sorry that I have not been answering sooner.... Injections n setting up house is been keeping me busy... Sure feeling better that things are finally making it look like home... WOWOW what a difference.... Yeah!!!!! I was cross country trucker all me life more than 30 yrs worth.. It was semi accident.. Was on news on all channels Feb. 1 1998... Kept I70 n 256 junction closed for a long time that day.. Learning too cope n deal with all medical issues we should get some kind of recognition from the medical board on having too teach drs n all too deal with us... My dr agrees on this... TOTALLY!!!!!!!!! Huggzz thanks for asking!!!! Annie |
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| This message has been deleted due to termination of membership. |
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