Tag: physical pain

more about nerve pain

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

Watched the baseball game. It went to the 10th inning and my boys came through. They beat the Rays 2-1. It was the first extra innings game this season they won so I am hopeful for the season. The Sox improve to 6-4 and still are leading in the AL East.

Was happy to get an email about the blog I write for the American Association of Suicidology has made the news http://hosted.ap.org/dynamic/stories/U/US_SUICIDE_SURVIVORS?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2013-04-13-12-09-11.
It was good to see something come off of the hard work of the AAS president, Michelle Linn Gust to get the blog underway and now we have a voice.

It is not even six o’clock yet and I am exhausted. All I did today was run to the pharmacy to get my prescriptions and go up and down the stairs a few times to help my mother with some groceries. I have been up since seven. Seems I cannot sleep later than that. And I even stayed up late too. I didn’t go to bed until around midnight, after watching Lincoln and reading for a bit afterwards. I kept on going on twitter and facebook to wait for my meds to kick in.

Last night my foot acted weird because of the CRPS, complex regional pain syndrome. It got really cold, like ice and really painful. I put on some socks that were heavy and still my foot was cold even under my blankets. My bones were hurting really bad and if I had a chain saw, I probably would have used it to amputate. That is how bad the pain got. Then after it warmed up, it really warmed up. It got really hot and felt like it was on fire. I had to take the sock off and leave my foot hanging off the bed away from the sheets and blankets because it just was burning me. Nerve pain acts this way. The doctors don’t really understand why this happens. I am seeing a specialist on Tuesday to talk about this. I really hope she can give me some answers. All I can take is pain medication to soothe it or use a gel to try and calm it down some but touching it hurts like hell, which makes it difficult to use the gel sometimes. I find that oral meds work well for this type of pain, but the problem is that most doctors don’t want to prescribe it. I have not run into problems but I know I will soon enough. I’ll get the opioid speech how it is not good to be on these meds long term. But I have been on these meds for almost a decade now and aside from constipation which I control with some senna, I have no other side effects. It might make me drowsy but it’s not like I am operating machinery or driving like I used to. Now I just take these meds when the pain flairs up, which will be again tonight. Every night I am in this horrible pain but it’s never the same. Some times it is bone crushing, other times it is a burning sensation like my foot is on fire. Other times it feels like a barbed wire is surrounding my foot ready to be garroted. I can’t say what will be in store for me tonight after going up an down the stairs four times in a row this evening. I am not looking forward to it and there is no sense in taking the meds early. The pain hit unexpectedly, when I least expect it to so I can’t judge a good time. That is the most frustrating this about this condition. I have a HIGH pain tolerance and it usually isn’t until a pain is an 8-9 that I will feel it. Right now it is simmering on a 4-5 on a scale of 1-10. I have heavy thermal socks on to prevent it from getting cold because it is still winter in New England. My house is cold because my mother doesn’t want to pay a large gas bill, which we shouldn’t have to turn the heat on in the middle of April anyways!! So I try and protect my foot from getting cold anyway I can. But sometimes even having socks on will not prevent my foot temperature from dropping. My left will be cold as ice and my right a balmy 98.6. I hate this condition and wish I never got it but I got to learn to live with it and that is the hardest part.

pain and misery

by Midnight Demon, posted in Chronic pain

Eureka? I am in pain and want to do self harm to try and relieve it as no other pain pill does anything to take away or relieve my pain. I am tired of being in pain all the time, so much so I am entertaining thoughts of ending my life or drinking heavily to see if that helps. Crown royal mixed with some narcotics might do the trick in relieving the madness. It might also kill me but that would be a blessing and not a curse. I think I put too much pressure on my toes tonight while watching the baseball game. It’s hard to describe how I did this. I just realized this when my foot exploded. But then there are days when my foot explodes and I do not put pressure on my toes so I am at a loss. There is no rhyme or reason for my pain. It is nerve pain as clear as day, least in my mind. Tendonitis pain would be all the time while walking and going down stairs and such. But instead I have this pain while lying down in bed, while I am trying to go to sleep. It is as if my foot is saying “hello remember me? I am going to hurt you NOW because I CAN and there is nothing you can do to stop the hurting”. If it was my right foot, then I would say that there is a pattern but there is no pattern. There isn’t even a consistency in pain. Some nights I am tortured by burning, other nights I am tortured by vise like grips on my toes. Or like last night, I was tormented by zaps under my toe nail as if someone was trying to rip it off.

So I take my medication and I will be up for the next forty five minutes or so until it kicks in and I can hopefully find some slumber. I hope that I find slumber before I find a razor or get out of bed to get my whiskey. Maybe being drunk is the answer. I know that fresh cuts might help me but I have a wedding to go to this weekend so I don’t want to make a spectacle of my wounds. I have enough scars on my wrist that goes without saying. I just hope that I can stave off the impulses long enough to let the meds kick in and pray that it lessens the pain enough for me to sleep. I hate being like this….

ankle chronicles 3

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

I went to my appointments today for my primary and psychiatry. Neither had much to offer other than doing the same old same old. My primary wants me to see yet another doctor for the same problem I have been having. I want to refuse but I will make the appointment Monday to show that I am making an effort at getting to the bottom of my pain even though no one knows why I am in pain. They have different theories, each doctor I see has a different opinion or that there is nothing wrong with me because it doesn’t show up on an MRI or X-ray. I just want to be able to control my pain. Is that so wrong? That is why I see him, to get medication for my pain so that I am not suicidally inclined to end my life because of the physical pain in my foot and ankle. But let’s take it from my perspective. I have seen at least 10 medical professionals in the past year to find out what my pain is about. I have had countless sessions of physical therapy, all that have no helped my pain or ease the misery of it. And now he wants me to see my physiatrist to get yet another opinion on what is the reason behind my pain. He thinks that it is tendinitis. If that were so, I would have been cured of that within 6-8 weeks after immobilization. I have worn a boot for almost three months and still my ankle felt like it was going to fall off. To be up in pain night after night of doing NOTHING the past few months have shown that something nerve like is the culprit and not a mechanical problem like it was. Unless I am going up and down stairs wrong after 37 years. Then maybe I am doing something mechanically wrong flexing and reflexing my foot in the upward and downward motion of stair climbing. But no one know this for certain. Hell I don’t even know. I have to take the steps one step at a time to avoid falling. I have gotten so into the habit that I no longer do one step after the other on the stairs leading away from my bedroom.

I am tired of having to explain my pain every month but have decided that I am not going to take my pain medicine every day that I am suppose to. I have no appointment with my primary in a month like I supposed to either. So my little experiment will be can I go a few weeks without pain medication. I know this prospect scares me a little but I feel that I have to at least try this. My only fear is that it will bring on a pain cycle that will be hard to break once it starts. I know that if I don’t do this I might as well try and kill myself now. What is the point of going on like this if I am just going to have panic attacks worrying about pain all the time like I do. I have zap pain, I have burning pain. I don’t have pain down the leg. I don’t have back pain. I just have this fucking pain in my ankle and foot that does not go away except for when I sleep. It is with me 24/7. Some of it I am not aware of because I have gotten so used to it. But if I stop and think about it, it is there, buzzing like a bee.

CES: Stuff we don’t talk about in normal conversation

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

CES Stuff we don’t talk about in normal conversation

Bowels:
Could be incontinent, constipation, or loose stool. Everything that is your worse thoughts about it can happen. I know I usually write about pain and depression but I also get a few people that have Cauda Equina Syndrome looking for information/. So I decoded tp talk about the bowels because it is the most horrifying, indignant, humiliating business that someone with CES goes through.

Because we no longer have normal nerve function of the bowel, our pooping system is a mess. We need to keep track of what we eat, what gives us the runs. Also need to keep track of when we go. Forgetting when we last went can give us huge consequences such as impaction to an all out marathon of spending the day on the can.

Most CESers are on a variety of medications that cause constipation. It sometimes can take what seems like a stick of dynamite to get things going and then when they do, all hell breaks lose. Other times we push and strain just to get a rabbit pellet out. This kills me when it happens because it feels like I am pushing a softball out of my anus and instead it’s nothing more than a tiny golf ball. Then because the stool is most likely hard, you get hit with nerve pain so bad you want to pass out or blow your brains out. Nerve pain in the rectal area is so painful you wish you never have another movement again. Sometimes this pain goes away, other times it doesn’t and you are stuck with proctalgia for days. This type of pain is different than the ball in the butt feeling. The ball in the butt is a constant sort of pain that is always there. This nerve pain is like a red hot poker going right through you, causing you to feel pain so internally like you never had before. Luckily I don’t have this pain every day or I would commit suicide. It only happens when I pass hard stools.

I do suffer from incontinence at times with loose stool. I’ve found that I cannot tolerate cottage cheese like I did. It causes the runs and I am on the toilet for the day.

Most CES sufferers try to have a bowel regimen. It involves either the use of laxatives, enemas, stool softeners, or fiber. In some cases, manual evacuation of the bowel is required because the bowel is so weak you can’t push it out. Occassionally or maybe more than not there is the danger of impaction. That usually requires a hospital visit and it can be humiliating.

Getting used to the anxiety of going is not something to take lightly. There are days I don’t leave the house because of fear of an accident. There also are times where even at home I dread going to the bathroom because I don’t know if it will be good or bad. Sometimes even while on a regimen there will be days of miscues and accidents. Finding one that actually works for a good length of time is like finding a secret formula. One day this will work, another day something else will. Everything you have taken for granted before this happened to you is lost. And there is no greater loss than crapping your pants.

Some people have found it helpful to have a poop day. It is a day that is set aside just for that reason, though you can’t always rely on that one day to go. Luckily my condition is not that severe that I require it, but it something to keep in mind to have some measure of dignity and control that we have lost.

Living with CES is hard. You need to keep track of so many thing, fluid intake, bowel output, bladder output, where your feet are at all times so you don’t trip over them. It’s crazy. It’s been a difficult twelve years living with this condition. I’ve lost my dignity more times than I can count. It’s such a shameful condition. Some people can brush it off after the hurt and even laugh about it afterwards but some people are like me, can’t, It hurts not being able to control bodily functions like you used to. It makes you want to throw caution to the wind. Mobility is another issue. If you can’t walk fast enough to the bathroom, that is the worst. Most find that they need a commode near their bedrooms for this reason.