Tag: CRPS

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.

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.

a crazy day

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

I know I have not written in a few days. I have been feeling exhausted. Yesterday I planned on writing but somehow the day got away from me and after the Sox game, I just was not in a writing mood.

I woke up this morning in pain, which is unusual as most of my pain is at night. But my foot was cold as it was a bit chilly in my room despite my foot being under the sheets and blanket. Pain woke me up and I took my pain medication. I was going to see my therapist today but my sister had the truck so I nixed it. It was a good thing I did because my mother came home from seeing her sister and collapsed on the floor due to low blood sugar. If I had gone to Framingham and then came home, I hate to think what would have happened. There was no way for her to get up. I couldn’t pull her up so had to call an ambulance. I didn’t realize she was having a hypoglycemic attack until her words were getting slurred. Her sugar was 38 (normal is between 70-100). And this happened just a few minutes before my session with my therapist so I had to cancel on her. I felt bad but I had no choice.

So I was kind of out of my tree from adrenaline and when that wore off the pain meds kicked in making me feel very sleepy. I still am fighting taking a nap but my foot is really hurting so I think I will after I write this. I then get an email saying that my appt with my PCP is in five minutes. I mixed up my dates. I thought it was Thursday and instead it was today. Fuck! Now I won’t get a refill of my pain meds. I still have some because I have been using less of them but I don’t have enough to last me till I see him on June 20th! He has no opening until then. I hope they can process my prescription. If not I am going to really be rationing my last of my pain meds. Which isn’t going to be good as I am in the middle of a pain flare up right now. I know part of it is that the temp keeps fluctuating between 50 to 70 degrees. And my body is sensitive to those dips and highs. Starting Thursday it is going to be in the 90s for a few days. Just lovely.

I had a friend from Australia email me yesterday. He wanted my advice about euthanasia and suicide. He has a cousin that wants to die because like me, he can no longer deal with his chronic illness. He doesn’t want to do the deed himself so has hired a doctor to legally kill him. I don’t know how I feel about this. I know that I wish I had a doc that would take me out of my misery but then my thoughts are because I am “depressed”. But you can be suicidal without feeling depressed so how does that play out? I truly understand what this kid is going through and can empathize with how he feels he has no other choice but to take his life but at the same time I wonder if depression is playing into a part of his decision to die and maybe if that were treated he wouldn’t feel that way. But then I look at my situation and think how can I justify that thinking if I am going to kill myself for that very reason.

I will write more on this later. I just can’t seem to get my thoughts coherent enough to think about this.

Chronic Pain and suicide

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

researchers have found a link between chronic pain and suicide.

that is something that I have known for sometime now as I am a chronic pain sufferer and have thought of killing myself numerous times to get rid of the pain. it is why sometime this year I plan on killing myself. it is not going to get better. I have a chronic pain condition and I really don’t care anymore. I will go through the motions of getting treatment knowing it is not a cure. just a bandaid and it hurts. But clinicians need to ask the question if they ever want to prevent suicide. I am a hopeless case. I have mental illness on top of chronic pain. it is worse with my condition. I feel like I can’t talk openly with my provider because then he tampers with my pain meds. I will not kill myself with my meds. I have other methods running through my head. but this article is interesting. I hope that people who read my blog that suffer from chronic pain do call the 800 number to talk to someone. I hope that it can work that way but I know that most people will not pick up the phone and call. I don’t know why that is. I know I have called but I am still where I am. I have found it helpful at times but sometimes I feel like they are just pretending to care when they really don’t. Just my experience. but that shouldn’t stop you from calling.