Tag: complex regional pain syndrome

Saturday Blog 5 May 2018

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

Saturday Blog 5-May-18

I woke up at six. I can’t remember why. Around 0630, my ankle started bothering me so I took my pain meds. I had wanted to get my screen today but I didn’t set my alarm when I fell back to sleep. I didn’t get up till noon and the place was closed. I took some more pain meds and then went downstairs. I took the Brie cheese out to make a wrap. Then I went back up to my room. I was hungry, forgot about the cheese, and ordered tacos. It was Cinco de Mayo after all. When the tacos came, I put the cheese back in the fridge.

After I ate, I decided to make Pumpkin cake. I haven’t had pumpkin in a long time. I never got to make it during the holidays because of pain. Now I have it for dessert tomorrow. I will bring some to my Aunt’s as my sisters and I are going to see her. We are going to have pizza. It should be fun but I am kind of dreading it because the last time I visited I cried. She has deteriorated so much. Definitely not the same person anymore. Sad that illness changes a person.

I had to file an infringement form on Amazon because there were sellers selling my book for more than what I listed my price as. I am not even sure it is my book they are selling or if they stole it and are marketing it for their own gain. I found out Amazon is letting third party sellers have the “buy” button but I don’t know what that means exactly. I found out that these sellers do not give the authors or their publishers money/royalties for the sales. I don’t know if that is what these other priced up sellers are doing. I just made some postcards for my 2nd book and I am wondering if I wasted my money. I was going to promote my book now it just seems pointless.

why do I bother??

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

Why do I bother

I had a hard time sleeping due to pain. When it sort of settled down after I wrote my 3 am blog, I was hungry. I didn’t dare go downstairs to get something to eat for fear of flaring it up again. I finally fell asleep some time around 4 and woke up four hours later. I took my blood pressure pill and pain meds as my ankle was killing me. Then my alarm went off. I had time to shower. It was painful but I did it. It was still muggy in the house. Despite cooling off some, I was sweating by the time I went back up to my room.

I tried to cool off but there was no point. I didn’t have AC, just the ceiling fan blowing hot air. I got dressed and then left for the bus stop. It was cloudy and when I got to Starbucks, it had started to drizzle. I was hoping it would cool things off but it didn’t. When I was done at Starbucks, the sun was shining. I went to CVS to get my mother a card for Mother’s Day and some tape that she wants. I had already bought her a few things. The tape is kind of a gag gift.

I went into town and got new glasses. The guy said it would be three weeks for them to come in. Great. I am already struggling to read as it is. What is another three weeks. I was early for my pain doc appointment. I went to the lobby of the building and just wrote in my journal. I was nervous about my appointment. I went upstairs 15 minutes before. I was called in by the medical assistant to do vital signs. My blood pressure was a little high. Then a new fellow came in and I had to tell him my story again. He went to get the attending and it was a long time I had to wait. Finally they both came in and the attending said that he decided to put me on a different pain med regimen and he emailed my PCP about it. So he will decide either yes or no. I have no way of knowing if it is a no because I wasn’t in the email. I am once again out of the loop while these doctors decide what is in my interest. I have to wait, again, for their decision. I was not happy. The med is something that I told him shuts off my bladder but he said that only happens with patients with neurogenic bladder. I told him I HAVE neurogenic bladder but I was dismissed. Okay, when I am in the ER because I can’t pee, I guess they will switch me to something else and take four months to decide what to put me on while I suffer.

I was too annoyed to email my psychiatrist to let her know how the appt went. I went to Chipotle when I got to the Square and timed it right to catch the bus home. I was sweating so bad. I ate my burrito while my mother was talking about her bills and the amount she has to pay. I could care less. My sneakers had arrived and my new pajamas pants. I will get them washed. I am still waiting for the shorts. They will arrive Monday. After I ate, I felt a little better. I was less grumpy. I emailed my psych telling her I felt like a pinball and that nothing new happened other than I need to wait, again. She asked what had happened so I told her.

I got really sleepy after I put in the new shoelace thingy for my sneakers. It took me a while to figure out how it was supposed to be. The diagram was not the best. It kind of made the sneaker tight but it should loosen, I hope. I kept the laces just in case I don’t like it. I don’t know if I can put my AFO in the sneaker with these thingys. I will find out on Monday.

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.

When suicide becomes the option due to the opioid epidemic

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

When suicide becomes the option due to the opioid epidemic

I have been involved in the suicide prevention things for the past eleven years or so. I have been reading research articles from those in the field. Then I became disabled and my suicidality increased but I have not made any attempts. The reason I say this is because I am now involved in the chronic pain community and found that there have been a lot of suicides since the crack down on opioids really started bearing down on patients and their doctors.

Recently there has been a woman in Montana that ended her life after the DEA went after her doctor. I find this, sadly, preventable. These pain patients have severe pain and need opioids to get relief. Since October, I have been trying to get adequate pain meds to relieve my pain but have been facing nothing but red tape. I have had two psych hospitalizations, which have not been helpful in the least. My psychiatrist is really worried about me. I have a plan to end things in a few months. It is a coping mechanism for me to make these plans. I don’t know if I will go through with it but it’s helpful for me to know there is an end to my suffering.

In the suicide prevention community, specifically a social media twitter group called SPSM (suicide prevention social media) there has been a lot of talk about getting the medical professionals to talk openly about asking about suicide as there has been research stating most suicides happen a within a period of time after seeking a medical professional. I argue that the psych professionals also have to ask the question, which sometimes does not happen for a variety of reasons. What is missing in those with chronic pain, is also lacking the talk of asking about suicide after pain meds have been forcibly cut or stopped all together. This kind of action has lead to multiple suicide that Dr. Kline, a pain physician, has written about.

I really think that if the pain psychologist in these pain clinics ask about it or even the health care professionals do, there might be a chance of saving a life. These patients feel their backs are against a wall and they cannot function without these meds anymore. The epidemic is nothing but hysteria. The CDC lied about their statistics and made it look like prescription opioids were the problem when it was really illicit drugs. Compounding the problem with chronic pain patients not getting the meds they need are the patients that have substance abuse disorder. The stigma surrounding substance abuse is probably as bad as those with suicidal ideation. There are no easy answers as some chronic pain patients has been grouped with the substance use and vice versa. Both need to be treated with meds but stigma and thoughts of not being able to be “strong” enough to stand the withdrawals or handle pain is just not a way of doing it. Unlike alcohol abuse where abstinence helps, substance use need medical assisted treatment with meds such as suboxone. There needs to be no legal punishment for those seeking treatment. More overdoses have happened due to people being released from jail and then using again because their tolerance has been lowered while being away from their substance.

With chronic pain, those that have been stable for years and being taken off abruptly, often turn to suicide because their pain is making their lives miserable. They can no longer do the things they did while on pain meds for their chronic pain. Often these patients feel abandoned by their doctors and some have been and are unable to find another doctor to treat them. Some have to travel far from their homes for care. It is a sad situation. Pain needs to be addressed. It was the 5th vital sign but the crisis has done away with it. So those with deep emotional pain don’t get asked about suicide and those with deep physical pain are neglected and never asked about their suicidal thoughts. Can we bridge this huge gap? Tough question to be answered.