Tag: complex regional pain syndrome

nobody knows

by Midnight Demon, posted in Chronic pain, mood disorders, suicide, writing

Nobody knows…

Nobody knows how bad I hurt

Nobody knows how late I stay up

Nobody knows the pain that I feel

Nobody knows the hours I sleep and don’t sleep. They think that because it is night time, I sleep but I don’t. I usually have the best sleep between 6 am and 10 am. That is all I need. A four hour nap. Because it is the only thing that makes me feel good for a few hours. It is the only thing that takes my pain away when I am in the deepness of the unconsciousness.

Nobody knows the struggle in my chest.

Nobody knows the pain that I feel

nobody knows how bad I want the struggle to end

nobody knows how bad I just want to end my life

I don’t get nerve pain

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, depression

I don’t get nerve pain

Truly I don’t. My room got freezing cold because I had the a/c cranked because it’s hot outside. My foot gets freezing ice cold, even under the blankets and a pillow so I put a sock on it. Now it is warmed up and hurts like holy hell. I am so sick of this shit. I know I put off my suicidal plan but it is back on again. I am not going to live with this shit. No fucking way. I didn’t do anything to my foot though it feels like someone is stomping on it. I have it up on a pillow and it still hurts. I just don’t get nerve pain. I was doing good all day. I thought today might be a day that I won’t have to take my pain medication but NOOOOOOO. My foot had other plans.

But such is my life with CRPS (complex regional pain syndrome). Thing is other than my foot getting really cold and then really hot, I don’t have any other symptoms other than pain. My foot doesn’t change color. It doesn’t swell up like it used to. I just have this exploding pain that comes for no reason. While I am at REST, when I want to go to SLEEP. And the pain isn’t the same. Sometimes it is exploding. Sometimes it is like it is in a vise. Other times it feels like some one is taking a hammer to each individual bone and trying to crush it. It is agonizing. Other times, if it’s not the bones in my foot, it is my ankle bone, the lateral malleolus. This is right where my peroneous tendons are. I have chronic tendonitis of these tendons. And they hurt big time. And when this pain starts it is like someone is driving an ice pick right through my ankle bone. It starts off the same way as my bones in my foot. They get really cold even though to the touch they are warm. Then it gets warm and it hurts like fucking hell. All I know is that I can’t sleep when I am in pain despite taking the meds because then my anxiety creeps in and it’s all over.

See, when my Cauda Equina Syndrome (CES) started, way back when, it started in my left leg/ankle. So now I have a bad association with pain in my ankle flaring up and me thinking I am going to get CES again, which is worse than the pain in my foot! I could lose total function of my bowels and bladder, my back could go out, I could lose motor function of my legs and end up in a wheel chair. It’s not pretty. But it is what I fear because I have a disc in my back that can make this happen at any time. I have been living with this fear for the past few years and it especially troubles me that the disc touches the nerve roots that control all these things but the docs won’t do any type of surgery because there is no compression. So I live in fear instead. My anxiety goes up and it takes an Ativan to get me to calm the hell down and music to put me to sleep (sometimes). I usually have my anxiety in check but when I am in serious pain, like now, it takes forever to calm down from it. I have to constantly move my toes or realize they are there and not numb to make me feel better. But sometimes during these flare ups, I can’t move my toes and that just sends the anxiety up to panic mode. But as long as I can move my hip, leg and ankle, I know that I am ok. But living with this anxiety is no fun. It drains you like no tomorrow.

Meds are kicking in so I will stop here for now. For those that read this, know that you are not alone with your symptoms.

sleepless night

by Midnight Demon, posted in blogging, depression

Listened to the Sox win the game. I can’t sleep. It is too hot in my room despite the A/C cranked. My ankle is killing me and I just took an Ativan to try and calm down as my thoughts are squirrelly. It’s going to be a long week as the Red Sox are on the west coast this week which means the games are going to be late ones. I have not missed a game all season, though I might have fallen asleep during one or two. Listening to monotone voices will do that.

I miscalculated my numbers for reaching 10,000 views for my blog. Unless I can get 40 views per day over the next two weeks, I am not going to reach it. My average is 20 views per day so I seriously doubt it is going to happen. But, stranger things have happened. I got 143 views in a single day. If that happens again, I will be in good shape. The nice things about knowing the stats is where the views come from. Today I had about 10 different countries looking at my blog. Usually I just have the US, Canada, the UK, and sometimes Australia. Today I had those four plus Bolivia, Belgium, and India. I forget the other countries.

I hate it when I can’t sleep. It makes me really restless and the more I try to sleep the more restless I get. Which is why I am writing. Sometimes writing will calm me down enough to sleep. I don’t feel racy. My thoughts are just going around in circles because my ankle pain is driving me nuts. I had a deep stabbing pain earlier this evening and now my ankle and foot are on fire. I can’t seem to find a comfy position to put my foot. I am a side sleeper and usually sleeping on my right side will ease the pain but not tonight. So I switch and that makes it worse. I can’t sleep on my back because I will have to raise my feet up so my back doesn’t hurt. And I am too lazy to grab my trapezoid foam cushion to put my legs up. I know I am making excuses. But it’s tough being in pain this late at night. If I am not asleep by two thirty in the morning, I will take another dose of my pain meds. I can’t take anymore right now because it will be too early.

Because of my suicidality, I have been thinking of going in the hospital but there is no way that I can. Not with the way my current pain med prescription is written. I will only have one pill every six hours. That is not going to do me any good, especially when I am in this amount of pain. And if I get a flare up in the hospital, which I most certainly will, I will be beyond screwed. I know I did too much today and now I am paying the price. I hope tomorrow will be better but it already is tomorrow.

My mood still sucks. I still feel like I am in a bottomless pit. I hate it. I have tried to get out of it a few times today but it seems every time I try, the deeper I am sucked in. I have listened to good music to try and keep my spirits up but it has done nothing for me. Just made me think more about why I am single and not in a relationship. Made me think of my ex-girlfriend who I know I hurt once again. I have been meaning to try and text her but I know it is probably for the best that I leave her be. I miss her though. I miss talking to her. But she is crazier than I am. Because of this, I broke up with her again. She just doesn’t realize that she is hurting herself in ways and I can’t be around that. I have tried to point it out to her several times and still she goes back to the same behavior so I put an end to our relationship. It was difficult to do but it had to be done.

Maybe that is why I am depressed. I have not told anyone about how I feel about losing her. Everyone has told me to dump her, that she isn’t good for me. But yet I have not told anyone how much it hurts being apart from her. I know she isn’t good for me and I am probably not good for her, but that doesn’t mean that my feelings got hurt in the process. We have known each other since high school. It really hurts to see this relationship end because of differences of opinion and her wanting to be the victim all the time. And she not taking care of herself. That is what killed me. We are 90 miles away from each other and I couldn’t be there for her even if I wanted to. And another reason why I ended it. No long distance relationship lasts.

I guess I will stop here as it is approaching 2 am.

Pain is NOT my Friend

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

Pain is not my friend

Most people have pain for a good reason. They break a bone, there is an infection, they stubbed a toe. But my pain is not because of that. It is because my nerves were damaged by a disc fragment that I am hurting and even though the disc is no longer pressing on my nerves, I still have the pain.

Tonight this pain is keeping me up. I think it has to do with the temperature change and thunderstorms that have moved into my area. I am like a human barometer. I am so tired that I am kind of falling asleep while typing this but the pain is preventing me from actually going to sleep. I have not had this type of pain in a few weeks. I almost forgot what pain was like. Now I remember and I don’t like it. I want it to go away again and let me live my life even if I was depressed and unhappy. Being in pain is horrible. It drains what ever energy you feel.

Even though I felt ok for a few weeks, I kind of missed the pain. Not in a masochistic sense. Just that after dealing with this for over two years, it felt weird NOT being in pain. Felt like something was missing and I just couldn’t figure out what that was. I had gotten so used to the pain being there all the time that without it, I was lost. Could I walk a little farther than I wanted to? Sure and I did. No pain afterwards. Today I walked a little farther and I think that is what caused the flare up. I don’t know if this pain is staying or going. I hope that it is going because I was really getting used to not being in pain again. Now I have to worry about things, like how long it will take for a shower. Just how many spoons it will take to do my daily routine. Even now I can’t find a comfortable spot to rest my foot without pain. And my foot/ankle is screaming at me. I am not doing anything to aggravate it. It is just resting on a pillow as I am typing this. I don’t have it elevated as I probably should because it will make typing a little difficult. But even then I don’t have relief. I wish the pain was telling me something but it is not. There is no bruising. No redness. Not even so much as a little swelling to indicate to me what I should do to relieve the pain other than to take pain medication as I have done. That is the MOST frustrating part of this whole complex regional pain syndrome. It is a difficult diagnosis to explain and I don’t even know the beginning to try to explain it. Other than my nerves have become so damaged it doesn’t know anything else except to hurt. And you can’t touch it with anything. Socks or even your hand will make the pain worse. I tried putting on a brace to steady it because it just felt like it needed it. It did help for a little while but then the pressure of the elastic was too much and I had to take it off. Soon as I did, the pain intensity increased. My ankle hates me and all I did that set it off was moving my big toe to stretch it out. Stupid I know. But really? Probably not. I am sure lots of people can move their big toe without pain or causing their entire foot to go haywire. But that is what I deal with. Every day. Every night. Pain is not my friend.