Chronic pain, sudden death, and other stuff

Chronic pain, sudden death, and other stuff

**warning long read**
Last night on Twitter, a fellow CRPS (complex regional pain syndrome) person posted a link about CRPS and complications (https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients ). One of them was that in certain patients, high pain caused a decrease in heart rate. This has been happening to me for some time now, usually precipitated by anxiety (for some reason, the anxiety happens when my heart rate is below 60 beats per minute and pain is above a 10). Most of the time the anxiety is a signal my pain is going to get worse, which further decreases my heart rate. This can cause sudden death eventually, especially in patients who have had the condition for greater than 2 years (I’ve had the condition for more than 8 years). This paper was about those that had the severe case of CRPS, though they didn’t specify which type (there are two types, type 1 being the gross appearance where the edema, purple color, and pain are noticeable and then type 2 (what I have) is less discernable) and more than one extremity were involved (I just have one, unless you count the foot and ankle as two). My blood pressure is usually lower than what it is normally when I am in a flare, another warning sign. Even though I am on blood pressure medication, including a beta-blocker, I am wondering now if the anxiety is not anxiety but possibly an arrhythmia caused by the pain. Of course, I don’t get this every day and certainly not when I am at the doctor’s office. I sent this article to my PCP and neurologist to have them understand the condition a little better as it gave specifics about the condition. Today I sent my pcp the article about sudden death with chronic pain patients and how methadone can some times lead to cardiac dysregulation. He wanted me to be on this but I now no longer do. As I am home most of the time, I really do not want to die suddenly for a family member to find me. It is one thing for me to die by suicide (which prevents me from doing that at home) and another to die from causes unknown.

I’ve had quite a week that has left me feeling ugly, gross, and perplexed. Monday I saw the therapist and while we were talking, I told her about the weight loss. I’ve lost around 30lbs this year and continue to lose due to not eating. Speaking to my psych today, she said there was a lot of reasons for the no appetite and the fact I physically cannot move around enough to make myself something to eat. The therapist, to me at least, was saying that I was controlling my intake as “it was the one thing I can control.” I wish that was the case but I would have done that long before now. My psych is going to reach out to her and I hope some understanding is made. I told the therapist about the events over the weekend with my mother not respecting my privacy. She (mother) again disregarded it as I was getting ready for the appointment. She kept on leaving the bathroom door open as I was undressed and I kept on closing it, which annoyed her. I did so because I didn’t want my nephew to see me naked. She said he wasn’t home. How the fuck was I supposed to know this when he leaves his door closed most of the time?? The therapist and I talked more about the abuse and how I feel my mother is always looking at me in a strange way that I cannot describe, which leads her to find something wrong with me so she can touch me out of “concern.” Even as an adult she watches me when I get out of the shower. Now when she happens to be in the bathroom while I am in the shower, I will stay in there until she leaves, even if that means drying off with the shower curtain closed. It totally makes me uncomfortable when she does this.

Another issue we talked about was how I feel about my body. I told her how I hated it and not just because I am in a wrong one. I feel ugly about it, especially how my face looks. Most of it stems from internalizing my father calling me fat and ugly most of my life. It disgusts me that I am fat but because he said so, I feel I need to be (I know that is weird but it is how I feel and the current weight loss is stirring up some very mixed feelings). We also talk about the urologist appointment the next day to try and ease my anxiety about it. I felt that there wouldn’t be invasive exams or testing. I couldn’t be more wrong.

I went to this appointment feeling nervous about it. I had a bunch of paperwork to fill out about the issues that I was seeing the urologist for. The doctor comes in and the first thing she wanted to clear up was my transgender issues and how it could be difficult as I am still biologically female yet transitioning to a male. I didn’t think nothing of it and felt it was okay (more on this later). I told her about the history and how the nerve injury caused my bladder to become dysfunctional and what my current symptoms were. She was thinking I could have small fiber neuropathy due to the small nerves being damaged while the bigger nerves were compressed. It made sense to me and somehow she thought is would also affect my stomach. I didn’t think anything about this but just thought it strange until I got the visit summary (more on this later). She said I would need urodynamic testing (this I knew would happen) and would I be willing to have it done today. At this point I am internally freaking the fuck out and I guess just to get the damn thing over with so said yes. She said she would see if there was an opening and she would be back. Major anxiety filled me at this point. She came back a little while later with a nurse. Apparently there was an opening before the next patient and I was kicking myself in the ass.

They brought me to the room and the test was explained. I had to sign a consent form to be aware of infection and some kind of urethra problem. I had emptied my bladder before seeing the doc. It was now an hour or so after I gave a sample and the nurse said she had to drain my bladder before the test. OK. There was 300 CCs. I thought that wasn’t bad. The test went on and I was to tell them how I felt while my bladder was being filled and when I got the urge or was uncomfortable. While this was happening the nurse decided to show the doc her whale watching videos that she took the day before. WTF. So here I am exposed with catheters in me and the nurse and doc are talking about the fucking whales and then showing me the pics as well. JFC. As they were talking, I didn’t want to interrupt when I got the fucking urge so waited until I could speak. When I got the urge, the doc said she was going to fill me some more until I felt like I was going to burst. That took another few minutes or longer. So I said when that occurred. They kept on looking at the monitors to see contractions and such. I then had to pee while the catheter was in me. They started to run water. Nothing. Then they tried me sitting in a commode. Nothing. I was trying to push but couldn’t for the life of me get the fucking urine out. So I told the nurse the only time I know I am peeing and when I stop is when I hear it. She told the doc this and left me alone for a bit to see if that helped me to go. It didn’t. Now I had to be cathed to get the urine out. While she was setting me back up again in the chair, taking out all the stuff she put in me, I asked how much did she put in me and she said 500 CCs. I thought to myself, no wonder I couldn’t pee despite me drinking over 1000 CCs before the appointment. She drained my bladder and I had more urine than she put in me. It was 800 CCs. So while there I had peed more than 1100 CCs of urine. I was brought back to the room after I cleaned up and put clothes on to discuss the results.

The doctor came in like 20 minutes later. It was around noon time. I hadn’t eaten anything all day and was starting to get hungry. My anxiety was still high from the testing and all the invasiveness of it. I am was having intermittent memories come back of the abuse my mother did as well as the traumatic medical exam I had when I was a kid as I sat there waiting for the doctor. I was trying to remain calm but felt myself zoning out, almost dissociating from the feelings of disgust, grossness, and violation from the past. Finally the doctor came in and she told me there were two kind of muscles that made it possible to void. One set was around the urethra and the other two were around the bladder neck. I had dysfunction around the bladder neck. So she wanted to put me on an alpha-blocker, which I knew was for retention. I was to see her in four weeks where she would start to taper the other retention med I was on that was started while on the psych unit. She also gave me some reading material about small nerve fiber neuropathy. When I picked it up at the pharmacy, the pharmacist told me there was a chance of orthostatic hypotension (basically dizziness upon standing as the blood pressure drops) so I was to get up slowly should that occur and some eye condition that was highly unlikely.

I felt so gross and wanted to shower when I got home but my pain flared up and I didn’t want to run the chance of causing more pain. I also wanted to eat something but because of the emotional state I was in, I lost my appetite and food wasn’t appealing. I really didn’t even crave anything. I was reading over what the doctor had given me and saw in my “issues” was female to male transgender (FTM TG) person. I kept on getting notifications from the patient web thingy about results of testing that was done. I logged on to see them then looked at the problems/issues and sure enough the FTM TG was there. I got really mad and felt like this was discriminatory. I sent the doc a message that I wanted this removed. It was after business hours so I didn’t hear back till the next day. After a series of messages back and forth, I learned that it was the fucking dumb stupid electronic record that had put the “problem” there and the doc couldn’t do anything about it. She let my PCP know about this as she agreed with the points I was making and she assured me that she did not see it as a problem. Also listed in the issue/problems was GERD (gastroesophogeal reflux disorder). I thought that was odd as I already had it but apparently, it could also be caused by the small nerve fiber neuropathy she was telling me about. In the paperwork, she listed that I could have a skin biopsy for the neuropathy and listed the two neurologists that do it. Oddly enough, I already had contact with them as one of them was the one to diagnose the CRPS.

The past two days have been rough with pain and suicidality. Tuesday I was going to end it but because of rain, I postponed it, least until my pain flared up wildly. I had given myself a time while home to do it. I was thinking about it and fantasizing about it. My psych had wanted me to call her but I was not going to. I knew if I spoke to her, she would most likely hospitalize me and fuck that. I kept looking at my means and kept trying to get the nerve to do it. I even thought of self-harm to try and distract from doing it but I couldn’t bring myself to. I really wanted to end my life badly. Around 5, I sent my psych a message saying she had my permission to look at the notes. I hadn’t sent any message to my psych about my suicidality and finally around 2200 or so, I did saying all the distress I was feeling the past few hours after she asked me who I saw that day.

I rarely have eaten since Monday. I have lost another 10 lbs or so since the end of July, making it around 30 lbs for the year. My clothes are baggy on me and I don’t like that. I like loose fitting clothes but not the kind where I have to really tighten my belt to keep them from falling down. The shirts are big but that is okay. Anything to make the appearance I don’t have breasts are okay with me. Yesterday I sent my psych a goodbye letter. I felt I had to because I really think I am eventually going to overcome the nerve that is stopping me from acting on the suicidal feelings. When I spoke to her today, I said as much. She wants me to keep in touch with her like I have, even if I send her a bunch of emails. She still wants me to be in touch with her should I feel like acting on my thoughts or thinking about acting on my thoughts. Trouble is, as I have learned the past few days, I cannot bring myself to call her nor even send her an email for her to call me. I am too scared of being sectioned or having to choose to go in voluntarily or not. I refuse to go back to the hospital. I will only go if I attempt and obviously, fail. I keep thinking of what the father of suicidology has said, “you should not kill yourself if you are suicidal.” I am trying to kill myself when I am not suicidal, which is slowly gaining momentum.

and just like that…

And just like that

I woke up when my med alarm went off. I know I fell asleep between 0230 and 0300 so I had a good amount of sleep. I didn’t take my meds right away and dozed until a little after 11. I had to use the bathroom and sort of wake up to talk to my psych around 12. I wasn’t in any kind of mood but pain was already a 7 and I hadn’t done much moving around yet.

I was still sort of dozing and kind of wondering what to do today when 12 came and I called my psych. She didn’t answer so I left a message. She called me back a few minutes later and we talked. I didn’t say anything about the plans for next week other than my appointments. She wants the therapist to be in touch with her and she is reaching out again to the new psychopharm that I will be seeing end of the month. She said she should know what her plans are by then and that I will be the first to know what they are. Back of my head was saying that was good but I won’t be here.

I had to use the bathroom again an hour later. My mother was in the bathroom so I had to wait. I am on my phone when she barges in so use the mouthwash. WTF. I was so fucking triggered because she closed the door and that always makes me nervous. I yelled at her and she is like it’s not like haven’t seen you before. WTF. I am a fucking adult who should be able to have some privacy when using the goddamn bathroom. Bad enough I have been dealing with the intrusive memories of what she did to me as a kid that now is just why the fuck am I still living with her. I just want to fucking die and that is the end of it.

Came back to my room and soon as I sat back down on my bed, pain shot up to a 10 and I was back to my suicidal mood again. I sent an email to my psych. I am supposed to be in touch with her Tues after my uro appointment. I am so apprehensive about it. I know I most likely will have to have an invasive test to see what is going on. I don’t know if I will go through with it as it is just creeping up the anxiety I have and making the PTSD stuff worse. Tentatively am planning on going to my location that day and rolling the dice.

I am not sure if the email that is in my drafts will be sent to my psych next week before rolling the dice. I can’t send it now and I really did not want to say what I had to say in an email. I wanted to mail it to her but I don’t have a physical address for her so that is out. I am sure I can probably get an address via Google but don’t think sending something to her home address would be a good idea. Fucking hate the institution she worked at for forcing her. I am just so angry.

I decided to make something to eat and that proved to be the death of me. I had just finished eating and was finishing up the rest of my coffee when pain just went berserk. It went up to a 12 and I literally could not do anything but force breaths out of my lungs. When the wave of pain slowly went down again, I put what I used in the sink and limped my way to my room. I couldn’t bear full weight on my damn foot. Going up the stairs was fun. I decided to at least put some clothes in my bureau and then I emptied my waste bucket by my bed. Within minutes of sitting back on my bed again the pain hit so damn hard I was breathless. I couldn’t see straight for the life of me. Pain is now a 12 maybe 13, from my ankle bone down the side of my foot. I can barely move as each movement hurts, even if it isn’t my foot. Trying to keep still is torture. I took my breakthrough meds even though I know a sugar pill would probably work better. But maybe it will bring the pain down to an 8 or 6 (doubtful, but could happen). My plans for a shower and doing something in my room are now gone. I got to take my recycling down to the bin and the trash, too. Guess that won’t happen today. I also wanted to package up some gifts for a few friends of mine that have a young child. Hope they will be happy with it. Also hoping my family mails it out should I go.

I am back to living by the hour and what that means is I don’t have a future. Everything seems to far away right now that even though Monday I see the therapist, it feels like years. I don’t know what will be happening tonight much less tomorrow. Monday is just too far away even though it is just a couple of days. An hour or minute is all I can handle right now. I am too overwhelmed with the pain and the suicidality that I can’t deal with anything else right now. It will topple the scales and I really don’t want to end my life in my room. The therapist said I was a pessimist and when I told her it was my middle name, she said she would update my medical record. Hard to be optimistic when you feel so hopeless.

in a restless state of mind

In a restless state of mind

I had my appointment with the therapist Tues. We discussed the abuse. She asked if I talked to anyone about it. I said no. I kind of did when I was a teen but that lead to bad consequences and I never spoke of it again. Then she asked about my suicidality. She said that she had to keep me safe and I felt like we were going along the path of the “no harm” safety contracts that I swear was not going to work with me at all. But, again, she didn’t get more specific about safety. Just decided to work on a DBT skill, which I don’t even remember what it is. I am supposed to be working on it but fuck, I am in no mood to. I told her I would write the responses in a notebook but I’ve tried to find ANY of the million and one comp notebooks I have and have failed. No idea where they all went. I recently bought two. One I know is in my everyday backpack. Where the other one went, no fucking clue. My room ate it. I know when I am looking for something, one of them will make an appearance.

When I came home from therapy, I got into a fucking flare. My foot went fucking ballistic and stayed that way for almost 36 hours. I woke up at 430 am yesterday and just said fuck it. I was thinking on acting. And yet I was hindered by my psych saying I should call her when I was thinking on acting on my urges. Well, it was 0430 in the morning so I wasn’t going to call her then. I sent her an email and tried to go back to sleep. My mother can always be counted on to disrupt my sleep as she called around 11 or so to see if the goddamn windows were closed as it looked like rain. Thunderstorms were supposed to happen through today. Around 2 I still hadn’t heard from my psych so asked her if calling her later was okay and she responded giving me a time. She called before I could call her at that time and we talked. She asked why my pain is always the cause of my suicidality. I told her it is just too much. I had foot swelling Tuesday night that continued until this morning and it was so fucking painful. I had three different types of pain going on that were so damn high it wasn’t even on a scale. So I just decided it was time to end it. She said no or she would send an ambulance for me. Shit. We are to talk again on Sat. I really don’t want to fucking talk anymore. I just want this fucking suffering to end. My plan is still on. She said she has the pipeline dream of me being better. I told her at least one of us has hope and she said she will hold on to that for both of us.

I got a response from my wonderful PT about what to do about the back situation. She said there are specific exercises to help stabilize the spine and can be done in like 7 sessions. I am not sure if I want to go back to PT as I just ended. I told her I had other fish to fry and when it is done, I will be in touch. I read the report as it came in last night. I have a new herniation at the beginning of my spine at T12-L1. It is minor. The worst one is at L3-L4, which is in the middle of where I had surgery. That is the disc that has gotten worse and is near my L3 nerve root which could be why my bladder is being so dysfunctional. I feel like I am a ticking time bomb. This level is unstable. If the disc goes or if I see a surgical consult, I most likely will need a fusion. I am not going to have a fusion because everyone that I know that has had one has had more pain. From what I read, fusions were only to be for the neck, not the lumbar part of the spine. I am wicked bad at remembering where I read stuff, so not sure if it was a journal or what. Don’t even remember the year but that is what sticks out in my mind. I could be wrong. But it would make sense as to why so many people with fusions have had them fail on them. Not saying everyone with a fusion hasn’t been helped. I just haven’t found those people.

feeling shaky

Feeling shaky

I had a few hours sleep. I had another bad night of pain that kept me up. Around 2 I started writing a letter/email to my psych. I told her how frustrated I was with her being dismissed and my anger about the institution. I also told her how difficult it is to call her when I am suicidal and thinking about acting. I had emailed her to find out when I should call her. She always said to call her but I didn’t know when it would be okay to do so. I always feel like when I call her, it should be an emergency as I usually just email her. I only call if my anxiety is through the roof and I can’t calm down or I am in overwhelm mode and need her to help calm me down. I haven’t had a response to the email, yet. I am not sure I will but we will see.

When I got up, I had one coffee, a cold brew. I had to go to the grocery store and the pharmacy to pick up my meds. I did a little shopping and got my favorite ice cream. I was worried it would be soup by the time I came home as it is really hot today. Tomorrow is going to worse. I hate summer. I went home quickly and luckily I didn’t have to wait long for the bus. I was starting to feel shaky when I came home, like I had three cups of coffee or something. I still am feeling jittery, even after I ate and had a soda. I just took some pain meds and my urine retention meds as I haven’t used the bathroom since I got up. I hate that my bladder isn’t working right. I see the urologist next week to find out what is wrong, though I suspect it is the nerve damage that I have. I don’t know if I will have to self cath or not. I hope not. I don’t know if the med I am on needs to be increased or just switched to another one. I did have success with Flomax when I was in the hospital for my second surgery. It really helped with the retention but didn’t always work after the re-do surgery as I was retaining. I remember when I had the MRI I was completely gone. My mental status was out in left field. I was being catharized and it was like I knew where I was but I didn’t. I thought I was in the ER but I was on the floor of the hospital. Least I knew I was in the hospital.

I have therapy tomorrow and I will discuss my past abuse which is going to be really difficult as I am having PTSD symptoms that are really bothering me. I had a medical procedure when I was little and I keep having intrusive memories about it. I don’t know what kind of test they were doing. I just know I was screaming for my mother and they had to restrain me as I was fighting them severely. I was totally freaking out. They had to sedate and anesthetize me. I was so distraught. Then I felt like my mother abandoned me and I was really angry at her. But I couldn’t tell her I was mad at her. I was a kid and you just didn’t say that to your mother. I have no idea if this created the voices. I was talking to them the whole time I was up and my thoughts were really fucked up. I had to take another antipsychotic to quiet them down. They were still quiet this morning and I had a hard time thinking. When they are quiet I find it hard to function. I need the “background noise” as I feel empty when they aren’t there. I also feel alone. They have been with me since I was five.

I am not really feeling anxious. It is more like agitation. I want to keep moving but don’t feel like it. I am really restless. I wanted to write to see if I could calm down as that sometimes works. Last night I wrote like three pages in my journal and it didn’t help. I just got more keyed up.

I really, really hate when you tell someone you are hearing voices and their immediate response is to tell them to shut up, like that fucking works. It irritates me so much. Like don’t you think I have tried that? Fuck. People have no clue what I go through or really anyone who have hallucinations, whether they hear or see them. I really don’t know what the “right” response would be but I know it isn’t “tell them to shut up.”

I think I am having side effects of the trilafon I took last night to quiet the voices. It feels similar to what I have experienced when I was on abilify. I probably need to take an Ativan to shake off the side effects. Living with this shit is so fucking hard. I am so tired of side effect of my medications. I know the risks outweigh the benefits but dammit, I hate the shakiness. I hate the constipation. I hate the brain fog and cognitive impairment.