Tag: complex regional pain syndrome

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.

Eight and one!!!

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

Eight and one!!

For the first time in Red Sox franchise history, the Sox have an opening record of 8-1! They had a huge comeback win in the bottom of the 8th, scoring 6 runs to beat the Rays 8-7! It was so fucking awesome. I was ready to turn off the radio when the hits were just coming left and right. Then I didn’t want to leave my room until the game was over! It was so fucking awesome. I am so happy. There is no game tomorrow (sad face). The game Tues is against the Skankees.

I had an awful night. I didn’t go to sleep until 7 only to wake up a couple hours later because I was hungry. I guess the couple pieces of toast that I had around 4 wasn’t enough to hold me. I had frosted mini wheat cereal. I told my mother I was going back to bed. She called me around noon as her pillow exploded in the washer. What she expected me to do, I have no idea. I am glad I put my phone on do not disturb.

I have therapy tomorrow though I don’t know how much sleep I will be getting tonight. Seems my pain likes to spike and stay up around 2200, making it difficult to sleep. I made a cup of tea after the game and my ankle went berserk. All the bones are aching right now. I am really tired.

I have decided to split my meds so I am not taking so much at night as they seem to be making me feel bloated and in general just bothering my stomach. I take about 12-14 pills at night so I chose the pills that were less likely to make me sleepy. I start tomorrow as I didn’t fill my pill box this morning and I woke up too late to take the meds I wanted to. I plan on taking them in about a half hour to forty-five minutes. I want to take them before 1900 today because I want to be able to try and wind down. Course I tried that last night but I had a pain spike and then an unexpected bowel movement that caused nerve pain in my butt. That was so much fun as sitting hurt until Neurontin kicked in.

The picture on my blog is the mug that my brother in law gave me for Christmas. I thought it was fitting for this post. I have deemed it my tea mug. I was really dying for a cup today. I had ordered some “strong” tea from the UK that my friend on Twitter told me about. I am glad I waited as the first kind I bought but canceled was 100 bags. This order is for 50 bags. I hope I like it. It’s made my Twinning. I usually buy Bigelow tea. I have been on a tea kick lately. I haven’t made coffee at home in at least two weeks. I still drink my espresso at Starbucks. It just tastes different than coffee. I really wasn’t drinking the cups I made, no matter what kind I was making. I just couldn’t drink more than half a cup. The coffee was okay but I just couldn’t drink it. Maybe it is just a phase and I will go back after a while. I hope so. I have four bags of coffee!

Open-Hearted

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

Open hearted

It’s the idea that you have to be open hearted to walk through life. You have to look for light. You have to know that those things that are going to keep you going, even if you feel unloved or broken hearted you have to keep your heart open & that’s the way to go forward. Mary Chapin Carpenter

I have been following Mary Chapin Carpenter since I was introduced to country music back in 1992. Her album that came out that year was Come On, Come On and it is one of my favorites. I found that she had other older albums but I just got the songs that were popular as I didn’t want to buy the tape (yes, cassette tape) just for that song. I have owned nearly every album since Come On, Come On. Mary Chapin just release a new album on March 30th. It has 1 new song and 12 songs previously recorded. However, one song was bugging me as I don’t remember hearing it, ever. I planned on doing some searching but today it came to light when she posted a link to an interview she did with the Inquirer. The song, Superman, was originally recorded for her album Time*Sex*Love but didn’t make the record. Mystery solved. As I continued reading the article, I found the quote above. Mary Chapin is a deep person as she is beautiful. She just turned 60 but she doesn’t look her age. I just love when I find these gems about her because she is not very keen on social media. She posts just stuff relating to her album or collaborations she is doing with other artists, usually female. She is the only artist where I saw in consecutive years when she came to Boston at what was then, the Fleet Pavilion. I have no idea what it is called now. Then she dropped off the face of the earth, which I later found out she suffered an embolism and was very depressed. Her album Age of Miracles talks about the depression a little bit. Some of those songs really touched me.

I spent the morning sleeping as I woke up in the afternoon. I woke up a few times but was quickly back to sleep. I think I only woke up because of my med alarm and my sister calling me. Then I pulled I will get up in five minutes around noon and fell back to sleep for an hour with my bladder saying if you don’t get up now, you will regret it. I got up. I wasn’t really hungry but figure I should eat so heated up a burrito. The game was on so I turned on the TV. They were down 2-0 at the top of the first but that quickly changed in the bottom of the 1st as they scored four runs. Then another inning the bases were loaded and Xander Bogaerts was up. He hit a grand salami, the first since 2016. The Sox was the only team last year not to record one grand slam all season. It was all that every fricken announcer talked about. In fact most times last season, they left the bases loaded. It was pathetic. So it was really good that X hit a home run. I was so fricken happy. He really has become a good hitter. I watched the rest of the game and the newest hitter, JD Martinez hit a 2 run shot. Then Devers hit his own home run. The Sox won 10-3. It was an awesome win!

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!