Tag: nerve injury

Colon blow and other Cauda Equina Syndrome “fun” things

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Colon blow and other Cauda Equina Syndrome “fun” things

I didn’t write my blog yesterday. I only got a few hours sleep due to pain and worrying that I would sleep through my alarm. I went to my psych appointment and she put me on a new antidepressant that is out. I came home and had a severe flare. My pain was through the roof. I was supposed to go to the ball game but it wasn’t happening. After my mother made dinner, I took about an hour and half nap when my phone’s med alarm went off. I took my night meds and got so sick. I haven’t moved my bowels all week so been feeling ill and I think the new med just made me nauseous. I thought I was going to hurl. I took my Zofran and laid still. I also took some Mylanta because I had gas really bad. When I didn’t feel like puking anymore, I took some fiber to help my bowels move along but a few hours later, nothing happened.

I decided to try some Miralax to help move things. I was hurting so bad and I swear my stool was moving into my small intestine rather than move along to my colon. I was still passing gas but nothing else. I went to Walgreens and bought some and a Gatorade to take it with. Having suffered from Cauda Equina Syndrome (CES), getting constipated is a HUGE thing. There is a varied range of people’s degree of injury to their bowel nerves. Some don’t feel themselves go so become incontinent and being constipate helps to prevent accidents. Some have a designated shit day where they take laxatives and spend the day on the can to relieve themselves. Taking medication for pain can be constipating. I have no feeling for soft or loose stool so can pass them with gas if I am not mindful of it. Never trust a fart is a common saying among those with CES.

I usually have hard stool and can go with senna. Lately, because of my flares and needing more pain meds, it hasn’t been working. Usually fiber helps me move along and I try not to have plans the following day so I can go to the bathroom in the privacy of my own bathroom. I hate using a public restroom when out because I don’t have the mobility to reach my behind like I used to due to my back surgeries. When the fiber and senna do not work, I take Miralax hence why I went to Walgreens today. I have been having a ton of flatulence which I cannot trust. I was able to have a few movements after taking the Miralax but now I am having what is known as colon blow where all you do is go to the bathroom. Since I can’t trust a fart, every time I get the sensation of urges (I can’t tell if it is a stool or gas urge), I run to the bathroom. For the past hour, I just have been shitting little turds, which is annoying me as the stool is messy. My bottom is so irritated and I have to use the incontinence spray that you don’t have to rinse to soothe it.

The most undignified thing is, because I can’t trust a fart and I have a lot of gas, I am now wearing a diaper to prevent my underwear from being soiled. I already had one accident today that required a shower. With the comfort of the diaper, I can let loose and if some stool comes out, I don’t have to freak out and be constantly changing my underwear. I have taken some stomach stuff for gas so I hope it helps. I don’t want to take Imodium because I don’t have loose stool even though I know it would help the gas part.

Another lovely “perk” is nerve pain after moving hard stools. This rectal pain can drive people who have never been suicidal to become suicidal. Nothing is worse than a pain in the ass that no pain meds can touch. Sometimes the pain can last a few minutes or hours or days. It sucks. No doctor knows why, even the colon experts.

The worst part of this day from hell, is I have been going up and down the stairs all day as the bathroom is downstairs from my bedroom. I hope it doesn’t cause another flare. Yesterday’s flare is still giving me nightmares. My ankle has CRPS (complex regional pain syndrome). It doesn’t like movement. I am sure I will flare later tonight, despite taking a nap. Rest doesn’t always help my pain like some pain conditions. I hate the unpredictability that CRPS brings. I wish there was a way to control it but there isn’t. I long for the days when my pain was driven by activities during the day. Now, it doesn’t matter. I can be at home all day and I will hurt. I can go out a few hours to have a cup of coffee and write for a bit only to hurt later in the night. It is awful. I hate it. It has taken away all the things I love. I feel beaten. And then I will have days like today where I am crapping my pants. It’s too much. I just always hope that tomorrow will be a little less painful because that is all I can do.

Murphy’s Law

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, CRPS, depression, mood disorders

Murphy’s law

I had set my med alarm for my pain meds last night so I wouldn’t miss a dose. I woke up around 6, took my meds, and then went back to sleep. I woke up some time after 9 and decided to shower. By the time I was done, it was too late to catch the bus. I thought about taking a cab and I should have, but I didn’t want to spend $15 when it wouldn’t cost me anything for the bus. I waited until it was time to get dressed and leave. I grabbed my insulated cup and left the house.

I waited and waited for the bus. I checked the schedule to see if there were any delays and there wasn’t. I also checked to see if I had the schedule wrong due to a change. Nope. The bus just never showed up. I was fuming. I caught the next bus, which meant I had to catch another bus to the square. While I was waiting, my cup fell out of my bag and broke. I was so damn sad. I loved this cup! I had been using it all year. I saved the straw as it was new. I would recycle the plastic when I got to Starbucks. But because I was getting there until an hour later, I decided to go to Dunks for my favorite sandwich and then go to Starbucks. Fuck the chains. I didn’t care. I ordered my espresso and I thought about buying another cup but I found my trenta cup so hope that doesn’t break.

After I ate and had some caffeine, I was a little less hangry. I was kicking myself for not getting a cab or uber. I went to my barber for my haircut and he did a really good job. I paid him double and told him I would be back in two weeks. He said save your money and I said I can’t. LOL I end up using it for food or something stupid. Best to put it in his hands. He said okay. He asked what I was doing the rest of the day and I said I was thinking of getting my new glasses as they just came in. So when he was finished, I went into town. It was a lot cooler than it was yesterday so it was a good day for the walk. But not a good day for my pain levels or having bronchitis. I was wheezing by the time I walked a little ways to the station. I used the inhaler so I could breathe better. I did okay getting to the optical shop but not so great on the way back to the station. I was out of breath again and my groin was hurting me. I think I am using my hip muscles instead of my legs so it’s pulling. Fun.

By the time I got back to the Square, I had to wait 40 minutes or more for the next bus. Screw that, I called a cab. I didn’t care and my legs didn’t either. I was hurting and forgot to put my pain meds in my shorts. I missed my noon time dose. The cab came and I was grateful. My niece tried to scared me when I got to the door but I was so concentrated on things, I didn’t really notice. I got her though as I went to her house to drop off the mail. HAHA payback.
My mother had a low blood sugar and asked me to make dinner for her. I said okay. I wasn’t hungry yet as I was just trying to recover from being out. I decided when I came home, I was taking a cab to the station tomorrow as I need to see my psychiatrist. I downloaded the app and registered. I then booked a cab for the morning. I made my mother something to eat and then my sister called asking to cook something for my niece. I had leftover pulled pork then made mac and cheese for my niece. I also had some. I was kind of wheezing while I was cooking but I had just used the inhaler.

After I ate, I cleaned up and then went up two flights of stairs to my room. My lungs protested big time. I was so short of breath and wheezing. I was also coughing a lot so took the cough suppressant. I am now so exhausted after I recovered and breathing normally. My ankle flared up within minutes of sitting on my bed. I was thinking of listening to the game, but I am too fricken tired. I am going to take my meds and call it a night. If my brother in law comes to put in my AC and screen, that would be good. Going to be humid all weekend and I know I will be uncomfortable.

I finally had a bowel movement today. I took some fiber last night and again when I got home. I knew I was going to go as I was getting really bad cramps. Only problem was I didn’t poop enough so I am still feeling uncomfortable. My friend told me to drink a lot of water but that has problems of its own. I already changed underwear twice today and don’t want to do it a third time. I have been trying to drink fluids anyways because I have been sweating a lot. I think I am going to wear a diaper tomorrow when I go to the ball game. Sucks but at least I don’t have to worry about wetting my underwear. Nerve injury sucks. That is all for now. Pain has reached a 13 and I need to take my meds before it gets worse.

berserk foot, no sleep

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Berserk foot no sleep

(pic is of Mass. General Hospital taken in 1858)
I was lying down all propped up on my pillows, lying on my back all comfy. I was ready to snooze but my damn fucking foot went berserk and my pain spiked to a 13. I am still hurting. I just took my pain meds so I am giving it a little more time before I take another strong pain pill. It is so hot in my room and I am sure my chocolate has melted. I have morsels in my room. It is dark chocolate, my favorite kind.

I am hungry but I can’t stand on my foot right now. That would be murder. I wish I had a protein bar or something like that in my room that isn’t too crumbly. I don’t want crumbs on my bed. I really can’t wait for the temps to be in the 60’s without the damn humidity. I really hate the heat.

I had put a sock on my foot as the ceiling fan air was bothering it. Now the sock is bothering me. I can’t fricken win. I am so tired and I know I am going to feel like shit later today. I probably am not going to get new glasses as I will be so tired. It’s almost 3 am. I hate that hour as it then becomes a guessing game as to when I will fall asleep. I hope my mother doesn’t want to wear her socks tomorrow. I would hate to only get 2 or 3 hours of sleep. I put on the white noise machine. It is making me so sleepy but pain is keeping me up. I hate nights like this.

I met a few chronic pain people on twitter yesterday. I was chatting with one of them. I told her I had cauda equina syndrome and she was joking about how a horse stomped on my foot, causing me my pain. Her autocorrect did something to the spelling so she had to explain it as the tweets didn’t make sense. I noticed tonight that my left foot is getting smaller than my right, when it isn’t swollen. I am losing muscle, which isn’t good and probably what is causing me pain. I don’t know if it is the CRPS or nerve damage. Thing is I am using my foot/ankle so I don’t know why my muscles are wasting. So damn frustrating. I think I need to see the new neuro to see what he thinks. I hope I don’t have to go to PT to try and fix it. It will be painful, more than what it is now.

I think I will use the diclofenac gel on the top of my foot. Some times it works to lower my pain. Not all of it but just enough so I can bear it. I sometimes will use lidocaine but I think the diclofenac will work better as it might lower the swelling. I really don’t know if it will help unless I try. Maybe then my meds will have kicked in and I can go to sleep.

My Story of CRPS, Complex Regional Pain Syndrome

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders, suicide

My story of CRPS, Complex Regional Pain Syndrome

I have had complex regional pain syndrome (CRPS) for almost eight years. I don’t remember exactly when it occurred. I would have to go back to the first podiatrist I saw in 2010 as he told me I had a sprain. The sprain occurred after I had a bad few days of really awful spasms in my foot. The spasms were so bad that it caused my foot to turn outward and even though I manually turned it in to stop the spasm, it turned right back. I was in agony afterwards. The meds, quinine and Zanaflex that I was taking did nothing to help these spasms. I had a nerve injury in my leg nine years prior and the same nerve injury four years before. I won’t go into that because it is another complicated syndrome.

I don’t have the typical presentation of CRPS. I don’t have the discoloration, temperature changes, swelling, etc. I just have pain and a little bit of swelling that causes my veins to pop out on my foot when I am in a flare. It makes the half of my ankle that is affected look bluish. I went to many doctors in the Boston area as well as in Boston. I must have seen specialists of all kinds, orthopedics, ankle surgeons, podiatrists, neurologists, physiatrists, etc. No one could really tell me what was going on. My neurologist that I was seeing for migraines and my nerve injury thought I had CRPS and so did at least two physiatrists that I saw. My former PCP was not convinced as he thought it was some mechanical thing going wrong with my foot/ankle so he sent me to more doctors that didn’t have a clue what was wrong with me.

During this time, I was working two different but the same type of jobs. I was working as a lab assistant in research and in the clinical labs. I worked anywhere from 40-50 hours a week. When my foot and ankle were bothering me, that kind of hindered my work. When one of the physiatrists sent me to a physical therapist to be evaluated for an AFO, I chose one job as moving around the two labs was difficult. I chose the clinical lab as I have been there the longest. But that was short lived as I couldn’t stand the pain when I came home. It was so bad and nothing was working except the opiate meds that I was taking, which I couldn’t take while working because it affected my cognition. Eventually, I had to put in restrictions as just walking around the lab was getting harder and harder to do. Because of my nerve injury, I couldn’t do certain things and then with my foot/ankle being impaired it made things harder. I ended up on forced medical leave and had to apply for long term disability and social security disability. Fortunately with all my medical records, I got both.

The pains that I had at first had changed. The pain is always changing during a flare. If my foot got cold due to the weather or even from the AC in my room, I had to wear thermal socks even if it was 90+ outside. Then the burning would happen once I got warmed up. It was terrible. I had to take one pain med for the physical pain and then another med for the burning pain. As recently as last night, I had several different pains at once. I had the feeling like a wire was around half my ankle, strangling it; a coring feeling that something round was trying to scoop out my last two metatarsals (foot bones) in my foot; there was stabbing along the tendons from my ankle down my foot in an L pattern; and the last three metatarsals were being played like a xylophone. There are other pains too. I sometimes feel like my foot is being crushed, the “glob”, which is an area of my ankle that has muscles, tendons, and ligaments are just throbbing. My bones ache terrible. My malleolus (ankle bone) was also being hammered severely last night. That is the worst pain that I have ever felt. I do not like bone pain because I have to take a strong pain pill for it and that pill can give me a lot of side effects, mostly constipation.

For some reason, only half of my ankle and foot are affected from the middle part outward. The inner part doesn’t hurt at all, though sometimes my big toe will hurt. No one has a reason for this. One doctor has said that it is a nerve injury and now my current PCP thinks that is the case despite my bone scan saying I have CRPS. It is very frustrating to deal with pain like this that just keeps you up at night or wakes you up in the middle of the night because your pain meds have worn off. All this week I have not had good sleep and have gone to bed between 4 and 6 in the morning. I tend to sleep all day, or most of it. It’s hard planning stuff because of my pain. I don’t have much of a social life. I don’t go to family gatherings or parties because I don’t know how my pain is going to be. Just taking half a step is enough to set off a flare. Or any type of movement can set it off. There have been many times I have been sitting in my bed, playing on my laptop and moved a little to get comfortable and wham, I am hit with pain. Another things that CRPS likes to do is after fifteen minutes of lying down or so, my foot or ankle will “explode” with pain. All I did was lay down. That was my crime. This is a terrible condition. I have thought about suicide many times during a flare. Fortunately, while in a flare, I am unable to walk so going through with something deadly is not going to happen. I tend to put it off till the pain goes down, but usually the morning comes and I no longer feel suicidal. I live another day.

I take small doses of short acting opioids throughout the day to manage my pain. My PCP wanted me to see a pain doctor so after four months, I did. He didn’t think I should be treated with pain medication. According to his notes, which I requested, he says I just need physical therapy. I was in physical therapy for three months. My flares were worse and the stress of going to the appointment and trying to keep up with home exercises was causing me more pain. I decided to quit PT until I had adequate pain control. I am still waiting. A month ago I last saw my pain doctor. He said he need to collaborate with my PCP and my psychiatrist then get back to me. I am still waiting. I honestly don’t think I will be treated with pain medication. In his notes, he has stated that he does not think pain meds are for me, though doesn’t state the reason. I am too exhausted to care. I pretty much decided to continue with what I am currently taking. I have made the decision to end my life at a specific time. No doctor wants to help me because the opioid epidemic is all based on lies and deceit. More chronic pain patients will end their lives or die a sudden death like Dr. Forrest Tennant has written about. The suffering will continue as long as the DEA continues to threaten doctors and keep them from being doctors.