Category: CRPS

Sleepy and Sad Day

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

Sleepy and Sad day

I’ve been up since 0630 because I woke up with side effects from the Invega. I had spasticity and spaghetti arms. I took my pain meds, half an Ativan, and BP pill. I couldn’t go back to sleep because I was so uncomfortable. An hour later I decided I would go to Starbucks and maybe write as I had time to kill, plenty of time.

The bus was late so I didn’t get to Starbucks till after 0815. I was still groggy as I ordered my espresso and breakfast sandwich. I then wondered how I was going to pay for my meal when it dawned on me that I had to open the Starbucks app to pay. Duh. Did I mention I was sleepy? The espresso took longer than heating up my sandwich. There wasn’t many people waiting for their drinks so I don’t know why 5 shots of espresso took so long. As I reached the table where my stuff was, I almost poured my drink out as I put my bag on the floor. Yes, I didn’t put the cover on the reusable mug. Great day I am having. I ate my sandwich and played with my phone. One of my friends had posted a pic of a doc that “sent a letter to the president” about how a person in his ER had tattoos and was smoking brand name cigarettes. Then he said should my tax dollars go to this person because he was on Medicaid. I thought it was very judgmental. The doc in the picture was white. I can only assume the patient was a POC, but I could be wrong. I felt like saying why should the patient be denied health insurance because of what he smokes and that he or she gets tattoos? It really irked me.

I finished my breakfast and took out my journal and notebook. I opened the journal to write for a bit as there was some stuff I wanted to write. I kept glancing at my notebook, wondering what I should write. I was still wondering if I should continue with what I had or start something new. I am totally frozen with this. I know I have to solve it if I want this damn story on paper. Thing is, I wasn’t sure where I was going when I first wrote, so picking it up again might lead no where. I don’t know. I only wrote about a page so it can go anywhere. I just got to move forward some how.

I was getting sleepy. A couple of young people came in Starbucks looking for an outlet. They had another brand of coffee. The guy’s pants was almost to his knees. He had a large overcoat on which was basically preventing everyone from seeing his underwear. I guess they found an outlet to charge their phones. They sat at the opposite end of where I was sitting. I just missed the bus home. I was cold and wanted my bed. The wind made every thing colder. I had to wait an hour for the next bus so I just wrote in my journal.

I came home and tried to snooze but my mother was watching the Price is Right and it was fricken loud. I heard every bell and whistle plus the noise of the audience. It was difficult to sleep. I gave up around noon when the show ended. I had to leave in a half hour to catch the bus to see my therapist.

I brought my therapist some muffins and we talked, mostly about my father. His anniversary is at the end of the month. Hard to believe two years has gone by. I still remember everything the week he died. It all happened pretty fast. I got kind of sad but I was too tired to let it affect me. My therapist said I sounded groggy. I was. He will be off next week so I will see him the following week.

I came home and just wanted sleep. I was still very cold despite the temps going up 10 degrees from the morning. I read Twitter to try and find out about Xander Bogaerts as he hurt his ankle. There wasn’t any new news. I got into bed and for the first time, I wasn’t warm under my fleece blanket. I must have laid there for about 10-15 minutes when my lower leg from the knee down felt like it was going to cramp. I took the other half of Ativan so I wouldn’t cramp. I waited for it to try and settle and then tried laying down again. My ankle was hurting really bad but I didn’t want to sit up again to take pain meds. I was just getting settled when the door bell rang. My mother was screaming for me. I didn’t care. I wasn’t going downstairs. My foot and ankle hurt too much and I knew if I stood, it was going to flare. I don’t know why my mother didn’t just call me on the phone. It turned out to be my books that I ordered. Fricken UPS had rung the bell.

I checked Twitter after sleeping for about 1.5 hours. My stupid med alarm went off and scared me to death. I wanted to go back to sleep but knew it was going to go off again in forty-five minutes for my night meds. Then I heard Wheel of Fortune so got up. I desperately needed food as the only thing I had eaten was the sandwich from this morning. I had something to eat and found out about Bogey. He cracked his ankle bone. Great. That possibly means 4-8 weeks out. I hope he doesn’t need surgery. He will be out for the season. I feel really bad for him. He had hurt his ankle while chasing a foul ball near the Rays dugout yesterday. I hope he heals quick. I am sad to see him hurt like this the beginning of the season. He was really getting into a groove. I don’t know who will take over his position. It won’t be the same infield with him gone for a while.

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.

swear post

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

Swear post

**********Warning offensive language in the blog post *************

I am in deep fucking pain and I can’t fucking stand it anymore. They say that swearing can decrease pain. What bullshit! If that was the case, I would be pain free by now! I wouldn’t need medication, just throw a couple of fucking fucks and boom, pain gone. Maybe it only works on stubbed toes. I don’t know.

I have been trying to sleep since I ended my blog about 4 or so hours ago. I took my meds a little after 1900. But when my mother came upstairs I had to check on her because she was breathing heavy. Then I had to pee. I then decided to have an ice cream sandwich and when I sat down, my fucking malleolus exploded. It felt like a burning hot rod was being driven into the bone. I looked down and there was a black dot on it. I foolishly fucking touched it and holy fuck I saw stars. I limped back up to my room. I dreaded going up the fucking stairs.

I got into bed and within a few minutes, the top of my foot felt like it was being grated with a cheese grater. It was so painful. I was ready to lose my fucking mind. It was just a little after 2200 so I took some Neurontin for the nerve pain. There is nothing else I can take. I took my pain meds at 2145. I don’t remember when I took the strong pain pill. Probably around 2000. For those that are new to my blog, I write in military time because I like it better than regular time. I think it is cool. Plus working in the hospital for so many years where I had to use it kind of stuck with me.

I might take another strong pain pill. I need something. I think I only took one pill today so I can take another one. I have been listening to my country radio station. On songs that I like, I have been tweeting the night time person saying I love the song. She is great as she quickly responds. One of these days I will get the nerve to call and request a song. I did that once and it was a disaster. I must have been on the phone with the person for at least five minutes and after the song I wanted he didn’t have, I was stuck to think of any other song. So embarrassing. I completely blanked out.

My favorite new artist Cam just did a cover song that she co-wrote with Sam Smith called Palace. It was okay. They didn’t show her face during the video. She is one hot woman! I love her. But she is younger than I am so I can’t really like her too much. But she does have an awesome voice.

I keep having waves of exhaustion and feelings like I am just going to fucking drop into sleep. I have been having these stupid waves all damn day. I was really hoping to be asleep by 2000. But for whatever reason, I am still fricken awake. I am kind of suicidal. The paper that I had to call for my pension is NOT for my pension. I am so frustrated. I probably am going to have to call my benefits office and see if I can cash out. Then I can seriously plan my death in three months. I hope the process is not too complicated. I just want to fucking die but I don’t want my family to be stuck paying for my funeral. I need to find my will that I wrote a few years ago. I want to update it. Got a few other details to get done then I can feel somewhat at ease about my planning.

I’m just fucking done with trying to go on. I can’t stand the pain anymore. The unpredictability of it is fucking distressing and waiting for meds to work all the time, wondering if they will. The losing sleep, the up all night, sleeping all day, just having no life. I can’t do this anymore. I just can’t I’ve tried the last few months to get help, but my docs are being cowards or just passing me off saying this one will take care of it when the no one really does. No sense in being hospitalized because they won’t do anything to help either. Just fuck it. Game over. Three strikes, you’re out!

waves of exhaustion are fun

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

Waves of exhaustion are fun

I was sort of having a good sleep, once I got to sleep when my stupid med alarm woke me up. I wasn’t quite awake so shut the fricken thing off, took my BP pill, and surprisingly went back to sleep until my alarm went off. I seriously detest taking this pill twice a day. I need the alarm to remind me to take it otherwise I am just getting half the dose I need to be on and I don’t want my BP to become unstable.

I had a fairly low pain day despite having pain spikes last night and going to bed late. I don’t remember much after midnight. I didn’t want to get up but when I said five minutes, it turned into ten and I started to rush. I had gotten dressed and got my muffins ready to be taken with me, then I realized I forgot my watch and had to go back upstairs. My mother then asked for me to take the recycles down and I told her I would when I came home as I didn’t have time to put them in the bin.

I got to Starbucks and because I rush, forgot my reusable mug. I ordered a new drink. Some kind of hazelnut macchiato that was supposed to be made with coconut milk but I changed it to almond. It also had mocha drizzle. It was okay but the milk made it kind of bitter. I probably won’t be ordering it again, least not with that kind of milk. I had a sandwich as I was to rushed to eat at home. I brought my Kindle hoping to read for a bit but I was so tired that reading was out of the question. I wrote in my journal for a bit before I caught the train into Boston.

I was early for my psych appt. I got really sleepy while waiting. My appt time came and I was still waiting. I thought I was going to fall asleep before my doc called me. I was so tired. I guess three shots in the macchiato was not enough. My doc finally called me and we chatted. She asked what was up with me and like I emailed her all week, I haven’t been sleeping due to pain. She asked where I stood with my PCP and pain doc and I said I haven’t heard anything in three weeks. So she emailed them asking them for a conference or something. My doc doesn’t play around. I love her for that. She did talk to the LGBT doc but was worried that without adequate pain control, she wasn’t sure how the hormones were going to affect me. I didn’t care. I already made up my mind about things. I told her I was suicidal and once I found a place to terminate, I was probably going to go through with my plan. I didn’t tell her about the other stuff. There was no point. I told her I wasn’t sure I want to start hormones as it all depended on what happened this month and left it at that. She didn’t press me for info. I started feeling weepy, like I have all week and said so. I asked her if we could increase the Zoloft as I am not a cryer. She said it could be hormones. I don’t care what the hell it is. I don’t want to be in the middle of my commute somewhere and have a meltdown over nothing. I told her 75 mg of Zoloft should be okay. So she refilled my script for that amount.

I left and was just so tired, I felt like crying again. It had started snowing and then sleeting when I got to the train station. I still want to go to the grocery store to get eggs. Even though we had like 6 dozen last week, we are down to like one. My mother baked and I used at least a dozen with my baking and cooking. We go through a lot of eggs. But the bus home came before the bus to the grocery store so I just went home. I stopped at Walgreens before home. The snow was coming down heavier and the wind was making it really cold. I couldn’t wait to get home. Before leaving the store, I bought some Reese’s peanut butter cups and M&Ms peanut because I wanted them. I didn’t even eat them when I got home. I made a frozen dinner and then went up to my room to change. It was cold in my room. I put my sweatshirt on and got under the fleece blanket. I still need to change my sheets but my back was hurting. My pain spiked a few times since being home. I just wanted to fucking die. My bones were aching so bad.

The one thing my psych said about the pain doc was that he wanted me to go to PT more than do anything else. I told her the stress of that. It is not going to happen with my pain levels and trying to do other stuff. I just cannot manage. The idiot also didn’t want me to wear my AFO anymore as he wanted more movement with my ankle. Since I was having a low pain day before the last block home, I was thinking maybe I should stop wearing it. I was only proved wrong as walking home my ankle crapped out on me. So screw him. He barely saw me for more than 5 minutes and didn’t even examine me. He just felt the temps on my feet. Some exam. Just pisses me off that this guy determined probably before I met him how he was going to treat me, or rather not treat me.

I plan on taking my meds early, reading 1984, and then hopefully sleep. Probably the last two aren’t going to happen but I can try…