Tag: complex regional pain syndrome

Midnight Demon, The book detailed

by Midnight Demon, posted in cauda equina syndrome, depression

BookCoverImage

Having a crazy day. I got up early this morning, for no reason other than waking from another weird dream. I went to see my pdoc today, which was good because she always calms me down when I am psychotic/delusional. She thinks I am just anxious over what is happening with my book and everything. She is probably right. I am not used to anxiety. I hate it and feel very uncomfortable when I feel it.

I got to sign my book for her. She really is proud of what I have accomplished. She even showed my book off in her class as a writing example. I am so happy she really likes the book.

The book is about my blogs and my struggle with mental illness and cauda equina syndrome. Cauda Equina Syndrome (CES for short) is a neurological medical emergency when a lumbar disc ruptures and you have weakness in your legs, lose your ability to control your urine/fecal matter, and have numbness down your legs. I write about this because people should be aware of what can happen with more than back pain.

My mental illness consists not only of depression, but of psychosis, paranoia, and delusions as well as Post Traumatic Stress Disorder. I write about my suicidal history more than anything because it is a suicide attempt survivor book.

I also have my personal experiences with the mental health system from the various therapists that I have seen over the years as well as the multiple hospitalizations I went through.

I hope you will support me by buying a copy of my book! It is available through Kindle and paperback through this link. Unfortunately, those are the only formats available at this time. I am going to look into iBooks eventually so iPad users can have access if they don’t want to download Kindle app. I am also trying to get it available via Nook but that might take some doing as I am not familiar with that format.

Chronic Pain is No Joke

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

Chronic pain is no joke

It has been a while since my left foot has been acting up. The last two days have been really bad. I think it is because of the weather changes, temps going from 30 to 60 always wreck havoc on me.

Though I have had a rough day, my thoughts right now are focused on my foot and its throbbing. I seriously want it to stop but there is nothing I can take to calm it down. I already took my pain meds two hours ago and can’t take another dose for another two to four hours. I am in such agony that I want to cut my foot off. I don’t have any power tools in my room so that is a good thing. And I can’t bear weight on my foot so I can’t get to the basement where there are the tools that I need. I hate being in so much pain.

I didn’t do much today, in the way of walking or standing. I did stand a lot yesterday, which is probably why my foot is killing me. There were a bunch of kids at the bus stop yesterday and I couldn’t sit down like I normally could. And it wasn’t like the kids were going to let me sit down. They were running and jumping all over the place. One little kid was actually looking at me like I had ten heads when I decided to move to another spot while waiting for the bus. It was like I wasn’t supposed to move. Now I am paying the price in increased nerve pain and physical pain. Plus my foot is swollen so that is NOT helping my case at all.

I am so tired but I can’t sleep because of the pain. My foot needs to settle down to at least a 5 on a scale of 1-10. Right now it’s a 9. I am glad I already took my night time meds because to get up again will be torture. I just hope I don’t have to go to the bathroom any time soon. Going down the stairs will kill me.

Why does my foot hurt? Because it is an asshole. But seriously, no one knows why. I have nerve damage in my foot and a little of what is known as Complex Regional Pain Syndrome (CRPS). I got the nerve damage from a ruptured disc thirteen years ago. Then I got another ruptured disc five years later but at a different level. I have had many problems with my left leg, mostly stemming from my back. I have herniated discs throughout my lumbar spine. I just hope that me lifting and carrying three cases of sprite didn’t hurt me in anyway. I will find out tomorrow. I know my arms are going to be sore.

THROB THROB THROB. That is all my foot does to aggravate me and put me in a bad mood. And there is nothing I can take for the throbbing. I just have to wait for it to settle on its own. Sometimes, if I feel like it, an NSAID gel will calm it down. But right now, I can’t touch my foot. Just the sheets on my bed are bothering it. It is that sensitive. I also love how all the veins in my foot are popping out like no tomorrow. Another sign that it is CRPS. And my foot is so hot, like it is on fire. I wish I had a fire extinguisher for it but none exists. That is what kills me all the time, the burning sensation in my foot. So I have the throbbing, burning, stabbing, bone-crushing pain going on. I really want to lob off my foot. I could cry but I am not a crying guy.

The invisible weakness

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

I spent most of the day wondering what to write today. I thought I would play with my dragon software that has been laying idle now for a month but had a yearning to listen to Garth Brooks so nixed that idea.

I have been reading the book “writing the breakout novel” by David Maass. Though I never attempted to write a novel, he is giving me ideas for my next book. I am thinking of writing about the most traumatic point in my life but fictionalizing it. I think I can do it. I don’t know if I can write a book about it, maybe a short story, but who knows. I will outline the chapters and such. This book helps with all of that. I could have a breakout novel or novelette.

On another note, been stewing on this all week and I finally can’t hold it in anymore. I have had trouble with my left ankle since 2009/2010. I can no longer stand for long period nor walk long distances like i used to. The reasons for this is not clear as every single test (xray/mri) has come back normal. The only thing that my doc still refuses to believe to this day (and I brought it up to him on Monday) is that I have nerve damage that flares up when I do too much because my ankle becomes fatigued. Because of this, I have gotten an AFO in 2011, took 2 bloody years to figure out that when I am fatigued, my ankle goes from a scale of 1-5, a 4 to a 3/2. AND HE STILL REFUSES TO BELIEVE THAT NERVE DAMAGE IS CAUSING MY PAIN. He thinks I haven’t found the right doctor yet. I have seen 10 of them over the course of 2010 to 2012, specialists from orthopedists, podiatrists, physiatrists, you name the specialty and I have seen them. But because NOTHING shows on the xray/MRI, they don’t want to treat me. Frankly, I know what is causing my pain as long as I don’t exert myself but that is hard to do. Just doing normal activities, standing to make an egg for example, will tire me out or standing to take a shower. I finally got disability but my doc thinks I could be more functional! Yea, if I could go back in time and fix my CES and not see the damn chiropractor! I am just so frustrated, actually beyond frustrated.

So when I bring up the fact that I have nerve damage in my foot and weakness, he brushes it aside as if it is nothing to think about. HUH??? But he still writes out my pain medication script and for that I am grateful because otherwise, the day he doesn’t do that is the day he signs my death certificate, far as I am concerned. My therapist and psychiatrist know this. Actually, I think my psychiatrist knows what is causing my pain but psychs don’t prescribe narcotic meds. It is a shame. Because if she could, and I wouldn’t have to deal with my PCP idiot, I would be a lot happier. I wouldn’t have to go through the rigmarole every month. There isn’t a doctor out there that wants to help me anymore that knows about nerve damage and weakness. If there was, I am sure I would have found them by now. I have seen at least five ankle specialists alone but because nothing shows up on the Xray, they just think I am fine. Well, I am fine. The damage is not in my tendons or bones per se. It is with the muscles that support my tendons and bones. When those muscles weakens, I start getting fatigued. The more fatigued I get, the more I try to walk improperly and that in turn causes me pain. I just wish my doc could understand this formula but nope. It has to be a PHYSICAL structure that is causing this. I am starting to think that if he were a psychiatrist, he wouldn’t believe I have depression because he wouldn’t be able to see it. Same thing. How I wish weakness (physical or mental) could show up on an X-ray. Maybe more people could be helped.

Right now, after all the little walking I did to get my mocha and a half gallon of milk, I am hurting. I have therapy in two hours and I am contemplating taking a pain med. But I am in a messed up mood anyways, so what difference does it make if I take it or not. Pain will only get worse and I rather deal with this level of pain than see it get worse.

Luna’s Gone

by Midnight Demon, posted in blogging, chronic physical pain

Luna’s Gone

I have had this song stuck in my head for most of the day. It is a song by Mary Chapin Carpenter on her Between here and gone CD. I was listening to this CD the other night. Her music is so soothing to me.

Having a rough day. Had to deal with my mother that woke me from a sound sleep so I could put on compression stockings on her. Not a good thing when you only got crap sleep to begin with. I am still pissed and I think she overrided my Tivo to not record one of my shows. I will be very upset and she will hear about it. I hate when she doesn’t let me record my shows. I pay for the damn cable dammit. But I am so sleep deprived, I don’t want to go downstairs and see if she did or not. I don’t have the energy to explode on her.

I have been in pain most of the day. It has been hard walking around because I am having problems putting weight on my foot. It doesn’t like it. And it is the same pain that I have been experiencing last night. My last three toes on my left foot have just exploded and hurt very badly. My big toes feels like someone is trying to cram it into something or make it shorter than what it is. I just know that I am in mega pain and I am not happy about it. My big toe really feels like some one is trying to snip it off too. I love these weird sensations that I get. Got to love nerve damage, NOT.

I figured out that my foot weakness is part of the problem. If I try and work my ankle/foot into normal moves, it becomes fatigued and then it starts hurting. The longer I try to keep my foot in a certain position, the more fatigued it gets and the more I hurt. I don’t even realize I am doing anything out of the ordinary because don’t all people keep their foot in a flexed position while walking or sitting? I think they do. I can’t seem to keep my feet flat on the ground like you are supposed to, mostly because I am short and the chair makes my foot dangle. Anyways, whenever I try and keep my foot in that upward position, my pain goes through the roof. It is not right away, because what fun would that be. It has to come out right before I want to go to sleep.

Last night I only slept for about 45 minutes to an hour when I had a strange, disturbing dream. I dreamt that someone had left me a comment on my blog telling me to kill myself and how to do it. The weird part of it was that it was in my handwriting. Creepy. And it scared me. I told my therapist about it tonight and she doesn’t know what to make of it. So much for dream analysis. She is getting worried because the dream process was so quick. Normally you need at least ninety minutes to reach REM sleep. I am achieving it in less than that time frame. When I see my psychiatrist next week, I will bring it up. Maybe I need to see a sleep specialist or something. I already have trouble sleeping but it’s not because of insomnia or overthinking. It is because of fricken pain. And this pain is just so bad I really just want to chop my foot off. But I don’t know if the pain is what is causing my sleep to be so disorganized. I really don’t know. Sometimes I can’t sleep because I have to write something. I have to either physically or electronically write something to “calm down”. And then once it is out of my system, I can go to sleep. My sleep pattern has been the same for the past three weeks. I sleep in three to four hour stints. It is rare that I sleep continuously straight for six hours or more. I am hoping I sleep at least six hours tonight as I am really tired.