savysac
09-23-2003, 09:21 AM
Hi everyone,
I haven't posted in a while, and while I am relatively new here( month and a half posting), I feel like I have a connection with many of you. I have RSD and/or CPRS and have found the RSD board to be very beneficial as well as this board. Thank goodness I have this outlet for support, information, socialization and being able to give support to others.
Here is my problem. I have been experienceing severe swelling of my feet and legs recently, probably as a result of the medication I am taking to stop the infalmation in my liver. Yesterday morning I woke up with so much swelling in my left leg(which is the RSD affected leg) that I could hardly move it. When I woke up, I experienced in my outer left thigh the worst pain I have ever felt, bar none. I am not talking about a few seconds worth, I am talking over 45 minutes without reprive. It was so bad that I could not move my leg, I was screaming at the top of my lungs, I began to cry uncontrollably and panic took over. I never rate my pain level at 10 because 10 is supposed to be the worst pain imaginable, well folks, this pain was a 10. I sat up, I rolled over, I moved into the fetal position, I got into a ball shape, I tried rubbing it, but that just iritated it. i dont know how I survived it, I must have passed out for a while becasue I dont remeber where the time went. The wort part was that I could not get up to get my bt medication. It was horrible!
Needless to say, I did not go to work yesterday, I don't feel well enough to go today, but I have to if I want to enjoy things like a roof over my head and food.
I took a nap in my recliner at about 1 in the afternoon, and when I awoke at 3:30, again this level 10 pain was there, it did not last as long as the first bout, but it was a constant 10 for about 25 minutes. I was able to take my bt medication because I kept it by the chair, I was not going to make the same mistake twice. I tripled the dose though, so instead of taking one as needed, I took 3 15mg of MSIR and with in 25 minutes it went from 10 to 8. At least at 8 I can somewhat function. In about 2 1/2 hours time it went back to the normal 5-6 it always is.
I am now afraid to go to sleep. I have tried sleeping in bed and a recliner, and when I wake up, I have this pain. I did not sleep at all last night and have been up since my nap yesterday.
Some questions that I hope a few of you can answer for me. How do you cope with the worst of the worst pain? Is there any position that is more favorable than others? Do you ever take more than your prescribed amount of bt medication in situations like this? What actions do you take when you realize the pain is not going away for a while so that you dont totaly panic and scream and lose your mind? Have you ever screamed aloud becasue of the pain?
Thanks for listening to me. I am such a wreck, I dont know what I am going to do. I haven't had pain this bad EVER! I never imagined that pain this powerful existed. What possible functional purpose can there be for a person to experience pain that horrific?
peace
terry
I haven't posted in a while, and while I am relatively new here( month and a half posting), I feel like I have a connection with many of you. I have RSD and/or CPRS and have found the RSD board to be very beneficial as well as this board. Thank goodness I have this outlet for support, information, socialization and being able to give support to others.
Here is my problem. I have been experienceing severe swelling of my feet and legs recently, probably as a result of the medication I am taking to stop the infalmation in my liver. Yesterday morning I woke up with so much swelling in my left leg(which is the RSD affected leg) that I could hardly move it. When I woke up, I experienced in my outer left thigh the worst pain I have ever felt, bar none. I am not talking about a few seconds worth, I am talking over 45 minutes without reprive. It was so bad that I could not move my leg, I was screaming at the top of my lungs, I began to cry uncontrollably and panic took over. I never rate my pain level at 10 because 10 is supposed to be the worst pain imaginable, well folks, this pain was a 10. I sat up, I rolled over, I moved into the fetal position, I got into a ball shape, I tried rubbing it, but that just iritated it. i dont know how I survived it, I must have passed out for a while becasue I dont remeber where the time went. The wort part was that I could not get up to get my bt medication. It was horrible!
Needless to say, I did not go to work yesterday, I don't feel well enough to go today, but I have to if I want to enjoy things like a roof over my head and food.
I took a nap in my recliner at about 1 in the afternoon, and when I awoke at 3:30, again this level 10 pain was there, it did not last as long as the first bout, but it was a constant 10 for about 25 minutes. I was able to take my bt medication because I kept it by the chair, I was not going to make the same mistake twice. I tripled the dose though, so instead of taking one as needed, I took 3 15mg of MSIR and with in 25 minutes it went from 10 to 8. At least at 8 I can somewhat function. In about 2 1/2 hours time it went back to the normal 5-6 it always is.
I am now afraid to go to sleep. I have tried sleeping in bed and a recliner, and when I wake up, I have this pain. I did not sleep at all last night and have been up since my nap yesterday.
Some questions that I hope a few of you can answer for me. How do you cope with the worst of the worst pain? Is there any position that is more favorable than others? Do you ever take more than your prescribed amount of bt medication in situations like this? What actions do you take when you realize the pain is not going away for a while so that you dont totaly panic and scream and lose your mind? Have you ever screamed aloud becasue of the pain?
Thanks for listening to me. I am such a wreck, I dont know what I am going to do. I haven't had pain this bad EVER! I never imagined that pain this powerful existed. What possible functional purpose can there be for a person to experience pain that horrific?
peace
terry
Sponsor
lindao1
09-23-2003, 03:37 PM
Terry - Bless your heart, sweetie.
My heart goes out to you my dear. I know the times that I've reached a 10 on the pain scale it seems like nothing works at all, and the time just drags on.
I wish I could say something to help you. Yes, I think we all have taken more than prescribed at times when the pain becomes excruiating. I know I have and will freely admit to it. Not often, but when the pain drives me to tears, then I feel justified in allowing myself a little extra hope and comfort by takign addt'l meds. It's not like we do it on a regular basis, so don't feel guilt from it please.
You mentioned the MSIR.That's not the long-acting dose is it? Perhaps you need to address your PM dr with prescribing something long acting. It may keep your pain from reaching an intolerable level.
As to what I do when the focus of my mind is on the pain, I just try whatever I can to occupy my mind for a little while. It's hard sometimes, I know. I use heat or ice, my "bed buddy" (moist heat) and either read, watch something funny on TV or come to these boards. All help to change the focus from my pain a little.
I wish I could offer more to you, Terry. If it helps at all, please know that you're not alone. And do speak to your dr. about a longer-acting med. I'm here if you need to vent or talk, my friend. Linda :D
My heart goes out to you my dear. I know the times that I've reached a 10 on the pain scale it seems like nothing works at all, and the time just drags on.
I wish I could say something to help you. Yes, I think we all have taken more than prescribed at times when the pain becomes excruiating. I know I have and will freely admit to it. Not often, but when the pain drives me to tears, then I feel justified in allowing myself a little extra hope and comfort by takign addt'l meds. It's not like we do it on a regular basis, so don't feel guilt from it please.
You mentioned the MSIR.That's not the long-acting dose is it? Perhaps you need to address your PM dr with prescribing something long acting. It may keep your pain from reaching an intolerable level.
As to what I do when the focus of my mind is on the pain, I just try whatever I can to occupy my mind for a little while. It's hard sometimes, I know. I use heat or ice, my "bed buddy" (moist heat) and either read, watch something funny on TV or come to these boards. All help to change the focus from my pain a little.
I wish I could offer more to you, Terry. If it helps at all, please know that you're not alone. And do speak to your dr. about a longer-acting med. I'm here if you need to vent or talk, my friend. Linda :D
posie
09-23-2003, 03:48 PM
Terry - That had to be hell! I'm so sorry it was THAT bad. :( I am not familiar with the term you used for your problem, but that pain sounded like a severe charlie horse (extremely strong cramp). I'm not sure that is what it was but if it was, try taking supplements like calcium, magnesium and zinc. To prevent further pain episodes. I've had charlie horses that have lasted a while AND THEY KILL!!! You can't hardly imagine worse pain. I'm not talking about a little cramp here. http://www.healthboards.com/ubb/dizzy.gif
And yes I have taken more than I should of pain meds during an acute attack. But be VERY careful. You don't want to OD on it. Tell your Dr. what happened. Maybe he can think of something else. 3X the prescribed amt sounds like a lot. :(
I hope you can find something to help you.
Rose
And yes I have taken more than I should of pain meds during an acute attack. But be VERY careful. You don't want to OD on it. Tell your Dr. what happened. Maybe he can think of something else. 3X the prescribed amt sounds like a lot. :(
I hope you can find something to help you.
Rose
Rosebud54
09-23-2003, 09:20 PM
Oh my Terry, I am so sorry that you went through that. I have FMS and I have it in a worse way, my whole body goes through times like that where like charley horse but all over and you can move but the cramping and pain is unbearable. That is why my doctor had me take Robaxin three times a day along with vicodin. But even with the muscle relaxer I would still get those cramps. I was trying to stretch and do some light exercise but it would make it worse for me and I found out from my doctor that I have to only do light stretching, because with my condition exercising makes it worse only things like walking can help or water exercising. I was eating a lot of bananas to help which it did but they can put weight on you so just get magnesium supplements. Hope you feel better soon. God Bless, Rose
whaleylaker
09-24-2003, 09:18 PM
Dear Terry, My heart goes out to you. I'm not aflicted with the same disease, but have gone through a 10 before. If you can reach your Dr. please do. Heaven forbid you have more episodes with no BTs. I am no expert, but maybe it's time to take another look at the meds. For most of us that's a scary moment (ie. Dr. thinks I'm drug seeking, will the Dr. just cut me off, etc) but if the Dr. knows the real agony you are going through it should only help. Then again all Dr.s are different. Please keep posting so we know how you are holding up.If there is anything I can do please post, Sincerly Lake (just Lake is fine, lol)
savysac
09-24-2003, 10:53 PM
Thanks everyone for responding.
I have had two more "bouts" since Monday, and I have had a grand total of 4 hours sleep since then as well.
I just saw my PM doc last friday and he upped my mscontin to 30mg 2x/day and gave me msir 15mg as needed for bt. When I saw him Friday, i had not been experiencing any level 10 pain. I am afraid if I call him now, just a few days after the appointment, he is going to get suspicious and think I am seeking. I dont know what to do.
I have been taking my mscontin 2x/day and it really doesnt seem to be helping. The ir only helps if I triple or quadruple the does when I get those attacks and at that they only bring it down to a 8.
I am afraid to go to sleep, the reason I had two more attcks was becasue out of pure exhuastion, I fell asleep in my recliner and woke up with the pain, another time I was on the couch and passed out for a few hours and boom, I was attacked again. It doesnt help to rub or put ice or heat on it because the pain of RSD, which is a deep, penetrating burning, is not affected by any stimuli. It is just a nerve gone crazy and out of control, and not much can be done to prevent attacks.
Take care all, I am not in the best of spirits at the moment, but I will try to check in here from time to time, thank you all for the support and I wish you all a pain free night.
peace
terry
I have had two more "bouts" since Monday, and I have had a grand total of 4 hours sleep since then as well.
I just saw my PM doc last friday and he upped my mscontin to 30mg 2x/day and gave me msir 15mg as needed for bt. When I saw him Friday, i had not been experiencing any level 10 pain. I am afraid if I call him now, just a few days after the appointment, he is going to get suspicious and think I am seeking. I dont know what to do.
I have been taking my mscontin 2x/day and it really doesnt seem to be helping. The ir only helps if I triple or quadruple the does when I get those attacks and at that they only bring it down to a 8.
I am afraid to go to sleep, the reason I had two more attcks was becasue out of pure exhuastion, I fell asleep in my recliner and woke up with the pain, another time I was on the couch and passed out for a few hours and boom, I was attacked again. It doesnt help to rub or put ice or heat on it because the pain of RSD, which is a deep, penetrating burning, is not affected by any stimuli. It is just a nerve gone crazy and out of control, and not much can be done to prevent attacks.
Take care all, I am not in the best of spirits at the moment, but I will try to check in here from time to time, thank you all for the support and I wish you all a pain free night.
peace
terry
savysac
09-25-2003, 06:55 AM
Hi, its 5 in the morning and guess what? I just woke up screaming again. I dont know what I am going to do. I feel like I am talking to myself sometimes, no one understands what I am going through, oh if they could be here when I am going through the bout of pain, then they would see a show, but it is so hard for me to go through this alone. Oh well, let me flush and I will get off my pitty potty.
Take care all.
peace
terry
Take care all.
peace
terry
HockeyCrystal
09-25-2003, 09:30 PM
Terry,
Don't feel alone please... We're all here for you, no matter what... That's why we're here!
Much http://www.healthboards.com/ubb/heart.gif
Crystal
Don't feel alone please... We're all here for you, no matter what... That's why we're here!
Much http://www.healthboards.com/ubb/heart.gif
Crystal