Tag: complex regional pain syndrome

No Rest for the Weary

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

No Rest for the weary

I woke up at 0400 yesterday (30-May) in severe pain. I took some meds and then tried to go back to sleep. I slept for a couple of hours and then my alarm went off. I had an appointment with my pdoc. The appointment went well, we decided to stay the course with the increase in the mood stabilizer and see if the Cymbalta is truly making me sick by not taking it tonight. It really doesn’t matter as I doubt I will continue taking it. My mood has improved over the last two weeks, well at least compared to last week where I was in bed every day. I couldn’t do a damn thing without sleeping all day.

I wanted to take a nap very badly as my sister had tickets to the Red Sox game and I wanted to go. But I never got a nap so was really cranky. The tickets were part of my youngest niece’s school group and I was around kids. BAD, very bad for me because I swear a lot during the game. I had to twitter my curses during the game rather than say them outloud but toward the end of the game, most of the kids went home so I could curse. And it was a hell of a game. Two brawls. Three ejections. And the Rays were “scot free”. I don’t know what the Sox did to piss off every umpire in the MLB but it’s getting obvious there is a conspiracy out there with their calls going against Boston. And the sad part is that for the next two days, we have the same umpiring crew so it will be the same bias.

I did a lot of stair climbing and my foot is now paying the price. My foot pain did not abate during the day. I have been dealing with it like I said before, since 0400. I have been taking my pain medication which brings the pain down a notch but during the end of the game, I wasn’t able to take an additional med for the ride home. And it was a ride. The trolley ride, in which I was standing, killed me as I was putting too much pressure on it to stand upright. My foot is thanking me so much by swelling and not being able to move my toes. I am beyond miserable and I can’t sleep. I have been up for almost 24 hours. I love my niece but she was such a whiny brat tonight. I know part of it was because it was past her bed time but I had no nerves left to deal with it because of my sleep deprivation and pain level. I didn’t let on but I really wanted to say something to her but I didn’t. I had a good time at the game, despite the kids and aggravation. I tried my best to zone out as much as I could. My sister was the cheering squad but she was doing that to keep from being bored. Baseball is not her thing. But she was a trooper staying until the end of the 9th inning, despite a tied score. I had to leave by this time because the pain had become intolerable. I don’t know how many stairs we went down to get to home but it was a lot and my ankle did not appreciate it.

So now I am home, I have my foot elevated. I am medicated. Yet I am not sleepy despite being overtired. I don’t have anything that I have to do today. I had wanted to get my haircut, go to the post office, and pick up my prescriptions but that is way too many spoons (energy) at this point. I don’t think I am going to do much other than veg out. If I am lucky, I will sleep past 0600. I am tempted to take an Ativan to sleep but having decided to take a stronger pain medication tonight, I don’t want to risk further side effects.

Despite being in severe pain, I am not suicidal like I thought I would be. This is the fourth or fifth day in a row that I have been dealing with my foot pain, the same kind of pain every single day. I just haven’t been able to get a break from it. I am hoping that taking the stronger pain medicine breaks the cycle and I get some relief but there is no guarantee that will happen. Right now, all I want is some pain free sleep. But it doesn’t look like I will be getting it. I still am waiting for my meds to kick in, and it has been over an hour since I took them.

It is strange not being suicidal when I am in so much pain. You would think that I would be, that I would want that escape. I guess part of it is that I am not feeling hopeless about it. And I am not severely depressed like I was. Pain changes the way you cope with things. Right now I am feeling the pain but also trying to block it out of mind. I guess when I can no longer do that, maybe then I become suicidal? I guess we will find out soon enough.

Nerve pain is no joke

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

I laid down a little while ago to try and get some sleep but my foot had other plans. It feels like it has been submerged in ice cold water and then thawed out. I feel like every nerve fiber, neuron, and nerve bundle is firing all at once. I am in agony and there is nothing I can take for it except to wait it out. The funny thing is that I take Cymbalta which is supposedly a neuropathic medication used to treat this type of pain. Either I am on too low a dose or it just doesn’t work for me. I just want to sleep and I am itching on despair.

I didn’t think this would happen. I thought I would be in physical pain, bone crushing pain, not nerve pain tonight. I hate feeling so helpless as my foot is hurting and there is nothing I can take for it. I just have to wait for it to calm down on its own. If it was just one part of my foot, I could put a gel on it but the pain is ALL over my foot and I can’t put that much gel on my foot. I will get it everywhere and I don’t know if it will be effective. Nerve pain sucks!!!!

I am deeply frustrated that there is nothing I can do but suffer. This is why I become suicidal because my situation is hopeless. There is no end to this pain. The only way to stop the pain is to end my life. And I want to so bad. But my family needs me, least I think they do. My sister has been depending on me more to take care of her younger daughter as I have been babysitting more. I am supposed to be up in five hours to take my sister’s car so that I can transport my father to his medical appointment. I don’t know if I can survive a day on five hours of sleep. This just totally sucks. and I feel like I should just end things. My life would be better off if I were dead. People don’t understand that being in chronic pain sucks. Least with cancer, you know there is going to be an end. But with chronic pain there is no terminus. It just goes on and on.

My foot is still swollen from today’s activities. I won’t be walking too much tomorrow, thank goodness. I know I overdid it today and that is why I am hurting. Seems that whenever I think I can go back to work I will have a night like this to remind me that I can no longer work an eight hour shift. I don’t even know if I will be able to work half a shift. I miss my coworkers though. I would love to be able to return to my old job but I don’t think I can physically do that type of work anymore. It just sucks. But maybe by not being here anymore I don’t have to worry about working at all or about my finances and being broke all the time. Having complex regional pain syndrome really does stink. and pain flare ups are the worse.

Mr. Hyde and nerve pain

by Midnight Demon, posted in chronic physical pain, depression, suicidality

I have been thinking the past few days. Yes that has been the smoke that has been circulating in the air in Boston. Apparently on Tuesday in the throws of another pain episode I was barely aware of, I sent my therapist a text. It said that I cannot go on living like this, with this level of pain. I have no recollection of sending it. I knew I sent it because it is my phone but it sounded more of Mr. Hyde. I have been trying to wrap my head around Hyde. He likes to come around at various times and sometimes I can “catch him” and other time he alludes me. But I am cracking down on when he is likely to occur. When I am deeply hopeless, suicidal, and in severe physical pain. All three must be present for Hyde to emerge. The sucky part about this is my safety because Hyde want to die. I wasn’t in danger of dying, as far as I know, Tuesday but I could have. I just wanted to sleep, and fairly succeeded on doing that. I also have to be in a sleep state to bring Hyde out. He is more likely to show himself while I am overtired. Like I am now.

I just had zaps go through my foot. Just imagine the shock you get when you place your tongue on a 9 volt battery, minus the metallic taste and you have the zaps I get in my feet. Sometimes they are stronger than a 9 volt. And they jolt me awake, like tonight. I was ready to turn in but my PTSD symptoms (hypervigilance and anxiety) have taken over. It is going to take another Ativan to calm down. Hyde doesn’t like Ativan too much. It makes me really sleepy so I do sleep. It doesn’t cause me to do other weird stuff like Neurontin does. I know that I am not having another attack of CES and that things will be ok but in my head, I am “excited” and fearful of when the next zap is going to come. Usually if I stretch out my legs, it makes it worse. So I have to sit with my legs up so they don’t get zapped. And there is nothing I can take for it. The zaps come and go as they please. They don’t last long enough for me to take anything, but boy do they cause havoc!!

I am listening to Luke Bryan. He has some really good songs that I love listening to over and over again. He has that southern voice that I just love. It can be a fast song or a slow one and I just swoon over his voice. It’s not relaxing like Mary Chapin, but it will do.

I really need to go to bed soon. It’s after midnight and I need to be up at six. I need to take a shower and get ready to take my sister’s car. I will need a large coffee to help my mood. The good thing is that I don’t need to rush because I don’t have to pick up my father till 830. I then have to take him for a blood draw for his Coumadin test. He doesn’t know it yet but he will.

Well, I think the zaps have settled down some. I hope I get some sleep tonight. Or tomorrow is going to suck…

beyond Exasperated

by Midnight Demon, posted in chronic physical pain, depression

Had an early morning today because my father had a doc appointment. It went ok, though my father had no clue what was going on and didn’t understand what the doc was saying. I had to explain it to him in smaller words.

While I was at the doc’s office, I had to use the bathroom. I found out, much to my dismay, that I sharted. Now I am in a very dark mood. I came home, washed up, and while making my way to my room, my ankle exploded. So in addition to losing my dignity, I am now in wicked bad physical pain. I took some pain medication and am calling it a day.

I wrote my therapist a letter that I had hoped to mail today but forget it now. I wrote her an excerpt of the blog I wrote last night. I felt she had the right to know what I wrote. I also added some things to it. I also texted her to try and have her call me. I really need to talk to her because I don’t think I can be ok till our next appointed time. I don’t know if she will call me or not. Some times she is able to and others she is not. I really am hoping someone cancels one of her appointments and I am able to get their time. A session would help me today. I could call my psych but I know she will just tell me to go to the ER and I don’t want to go. Besides, I don’t have a car and with my ankle the way it is, I can’t walk there. I just feel stuck.

Since the shart episode, I feel like I can’t trust myself. I am afraid to do anything that will cause my bowels to move. I hate feeling like an asshole. I know it isn’t my fault but the hardest part of dealing with CES is losing the ability to trust your own body. It’s gone and there is nothing I can do to get it back. The sensitive nerves are damaged and there is no getting these nerves back. I can’t feel myself and haven’t for the past eight years now. It’s the little things like this that bother me the most. And what is worse, is that I have no control over it when it happens. There are no warning signs. Just soiled underwear and skid marks. Luckily today I was wearing a feminine product because of my menses so my underwear didn’t get soiled. And that is the other thing that is frustrating me. That I am having to use feminine products because of my menses. I am beyond exasperated. I should not have to wear them but what choice do I have? It’s either that or really soil my underwear. I am just so frustrated by this. And no one understands, except another CES sufferer.

Why am I dealing with this? I should just be dead. To me that is the answer that I am looking for. I am tired of constantly dealing with a body that isn’t working anymore. I am tired of dealing with depression that makes my soul dark, that sucks the energy out of me. And that also goes for my body excretions as well. You have no idea how tiring it is to have a bowel movement sometimes. I feel like I am in labor. I sometimes am so weak afterwards that I need to rest. All because I can no move my movements because of the nerve damage. I literally have to push and push to get it all out. It is a very tiring process. And if this grosses you out, well, I am sorry. Every time this happens I want to kill myself. I just don’t think I can go on living this way. It’s just too much for me to bear. I am past my breaking point, well past it! I am so far from the edge that I still haven’t realized I am on standing on nothing. Yet gravity hasn’t knocked me down yet to kill me. Or maybe I am just falling in slow motion. I refuse to grab on to anything that might save me. I just am not good enough to go living anymore.