Tag: complex regional pain syndrome

a loss you can’t recover from

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

I got a lot done today, thanks to my mother waking me up before nine this morning. I finished my editing and worked on my introduction. I also helped her put up the Christmas tree. My sister is going to help her put the lights on later because I suck at that.

I am getting a little worried about how my intro is going. I started writing about my illnesses and then starting talking about my CES injury and where I was at with that. Then I felt like it was TMI for the intro. It also was filling me up with grief so I had to take a break. I then emailed my support group and asked if that was ok to put. I just don’t know how much of the CES I want to put out there. I know I should probably put it in one of the chapters that does deal with CES. Maybe I will write it out and then cut and paste it there as sort of where I am today section.

I got pretty overwhelmed with emotion and PTSD symptoms. I just couldn’t handle the anxiety of what I was writing. And I couldn’t believe what my life has been reduced to. It is a loss that I can’t recover from and I don’t know if I ever will recover from. That what sucks with CES. You might recover but it takes months or years even. As far as my ankle goes, I don’t think there will ever be a recovery. I don’t know if it will get worse, only time will tell. Until then I just try not to use it as much as possible because it gets angry when I use it. I know it shouldn’t do this. You should be able to use your ankle the way you are supposed to at anytime. But for some reason with my left ankle, the more I use it, the more pain I get from it. Like today, I went up and down the stairs I don’t know how many times. I went to my sister’s apartment on the first floor for coffee, then went back up to my room. After I finished my coffee I went downstairs to rinse the cup off. Then went back up to my room. I did this repeatedly most of the day today. My sister needed some help cooking some chicken wings so I had to go back to her apartment (she lives on the first floor while I live on the second). I must have made at least a half dozen trips. And I know come eight o’clock tonight or soon after I am going to be hit with pain. I sort of prepared this time. I took some pain meds a little while ago to prevent pain from happening. Sometimes this works and I hope this time it does. I don’t want pain that I had last night. I had zaps going through my toes that were wicked painful.

I still am tempted to call my therapist tomorrow to chat. I just have been going through a lot of pain that is driving me whacky the past few days. I don’t feel like doing anything, other than cutting my ankle off. But I don’t have any big power tools to get the job done. I told my sister I want a chainsaw for Christmas, but I don’t think she took me seriously. I often wonder if I could really do such a thing. I know it will make a mess. All I keep picturing is the scene from Scarface when the guy dismembers the other guy with a chainsaw in the bathroom of the motel room. Not a pretty picture.

rambling 60

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders, suicide attempt

I really have no gas today, despite waking up at the god awful hour of five. I had no reason to be up at this hour, other than a slight pain on my pinky toe. I must have had a blister on it or something and it dissipated but I am left with pain. Thank you nerve pain. You cannot tell me that my foot isn’t messed up with mixed nerve signals anymore. There is just so many random things that happen with it. One minute (or more than a few) it is ice cold, then next burning red hot. Other times it is throbbing like I bang it or something. I gave up trying to figure out what I do to make it hurt the way it does. If I stand it doesn’t hurt too much but then I don’t feel the pain right away so who knows. If I walk too much, I won’t know until the next day if I did too much. I just never know what it is going to be. And then I will have a day or two of no pain. Of it acting like my right foot except for the constant tickle that I feel everyday, which is manageable, I hardly know my foot is there.

But I do have to be protective of it. I have to make sure I don’t expose it to extreme temperatures, too hot or too cold and I am going to hurt. I give up. Yet I suffer either way. It just feels so hopeless. And I have become helpless. All I can do is take my pain medication. It is the only thing that helps me. No other medication has helped and I have been on several.

It looks like I might be in the clear with the menses situation. I hope so. I am starting to feel a lift in my mood and that usually changes when things stop. I hope so because if I have another suicidal attack I think I will act on it this time. I just am so tired of fighting it all the time. I know that will push my book back further but what choice do I have? I also know that attempting might mean a hospitalization longer than two weeks and mean that I might spend the holidays inpatient. Oh well, not like that hasn’t happened before. It will be 18 years since my last serious suicide attempt. I still remember it as if it was yesterday. But things were different back then than they are now. Treatment in the hospital is like an inpatient office visit than an actual helpful place. Your “team” meets with you for fifteen minutes and that is supposed to help you? So if you start feeling better to the nursing staff, and they feel you are not a threat, you go home. That is how is works now. No doctors making real decisions, sure they cover it so that it looks that way but it really isn’t.

I am not sure I want to go in the hospital with an attempt. They watch you closer than they do when you go in without one. And you get out quicker. I have yet to see someone attempt and be out in three days time. I am sure it happens but not at the place that I go.

Regarding my book, for those following my blog: I did one paragraph today and organized my ending a little bit. I want to get it to be at least eight pages long so I have four pages to go before that happens. I will work on it tomorrow, I hope. If my motivation comes. I have to see my pdoc tomorrow so maybe I can do some writing before hand.

about CRPS

by Midnight Demon, posted in chronic physical pain

Very interesting article I found from the Facebook page about CRPS

The lack of awareness about Complex Regional Pain Syndrome has led to many myths. These myths can hurt the perception of CRPS that other people have. Here are seven myths about CRPS and the facts to dispel them.

Myth #1: CRPS is a rare/new disorder.

Fact: CRPS has been around for approximately 145 years. Doctor Silas Mitchell Weir and his collegues first wrote about CRPS during the Civil War. Some of the names it has been known by are: Causalgia, Post-traumatic Dystrophy, Shoulder-hand Syndrome and Reflex Sympathetic Dystrophy. In 1995 the International Association for the Study of Pain(IASP)felt Reflex Sympathetic Dystrophy did not adequately represent the whole of the disorder. They changed the name to Complex Regional Pain Syndrome.

Myth #2: CRPS does not spread.

Fact: In 70% of the cases of CRPS, it spread from the original location. It can affect any part of the body, including internal organs.

Myth #3: CRPS will go away in six month, a year, or 2 years.

Fact: Once you have CRPS, you have it for life. There is no cure and at this time, the treatments for this chronic condition do not work for everyone. If you are one of the lucky ones who go into remission, it can come back if there is another injury or for no reason at all.

Myth #4: Opioids do not help the pain of CRPS.

Fact: Using opioid medications can be very effective in lowering the pain level. They are used to help control the pain level in order to allow the patient to go to physical therapy. They also allow a patient to have a somewhat normal life. Without them, most patients would not be able to move or participate in daily life.

Myth #5: CRPS is a psychiatric disorder.

Fact: The pain is very real, as are the symptoms associated with it. No one can see the pain, but there are physical signs such as, color changes of the skin, loss of hair, and osteoporosis. Sometimes atrophy or contracture of the limb is also present. This myth is widespread among medical professionals.

Myth #6: Minor injuries do not cause CRPS, only major ones do.

Fact: The number one cause of CRPS is a minor injury or surgery. A sprain or broken bone are often the reasons heard when asking, “How did you get CRPS?” Minor surgery is a common reason as well. Surgeries for carpal tunnel, or to remove a neuroma from the foot.

Myth #7: If you don not get pain relief from a sympathetic nerve block you do not have CRPS.

Fact: Getting no pain relief from a block only means the pain is SIP, Sympathetically Independent Pain. Patients who get pain relief from a block have SMP, Sympathetically Maintained Pain. A series of blocks may be successful in putting CRPS into remission. It also may result in longer periods of relief with each block. This myth has caused delayed treatment for many people. — atSurviving CRPS & Chronic Pain, Our Personal Journeys.

I am lazy

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

Bitch rant

I have to complain about my game that I play consistently, on a daily basis, a few times a day. I love that this game gives you missions to complete but now they are getting ridiculous! For even the missions have missions. And you need the help of your neighbors to complete them or you might as well kiss the mission goodbye. I have opened other Facebook accounts just to play this game and then I realized the other day that I am just playing against myself! But unless you have a “neighbor” to give you all that you need every day, there is no other way to win the game/mission. Unless you spend money on the game for horseshoes. I used to do that when I was working. Now I pick and choose when to get horseshoes. I know none of this is making sense because I don’t think anyone plays Pioneer Trail on Facebook but if you do, don’t start. I have a lower level account and finished ONE stinking mission and got NINE, 9!!! In its place!!!

Talked with my therapist today. Though I don’t know if you want to call it really talking. She was quiet today. So I was too. Weird how that worked out because usually she is excessively talking about something. We talked about the transgender issues again and she pulled a name out of a hat, another doctor for me to see. I told her she doesn’t get that I don’t want to see any more doctors. I am DONE seeing doctors. The only one that I want to see if my primary care doctor and that is it. I don’t want to see any of his colleagues either. Unless I develop another fricken problem, I am not seeing another doctor. I know this doctor is different and will help with the transgender stuff. But there is a chance she could be another bitch that refuses to listen to me and then where will I be? What if she deems me too suicidal and decides that treatment for transgender is just too much for me. I can’t go through that type of rejection. It will kill me.

We also talked about the consultant. I wanted her to have him as a support and she only wanted to hear that I will see him again. Well I can’t because I can’t afford him, not with my insurance. I hate my insurance but I have to make do with it. But I can’t see an out of network doctor and this consultant is that.

I don’t remember what else we talked about. I really wasn’t in the mood for talking. I just wanted to go back to sleep. I have the same time appointment tomorrow to talk with her. Yay…not.

I didn’t work on my book today. I felt like crap too much to do much of anything. I didn’t even make myself coffee. I should start psyching myself up now to maybe leave the house tomorrow and get coffee. I knew that having Keurig cups was going to be the death of me. Why should I leave the house when I have coffee at home. And I have two different flavors of Starbucks coffee. I have the house blend and my Pike’s coffee. Both are sooooo good. But I need to get out of the house. I have been in since Saturday, maybe? I don’t even know the last time I left the house, oh dear. That should tell you something…And tomorrow is Wednesday. So almost three days in the house. I don’t think I have showered since Sunday.

And to make the day worse, my favorite catcher for the Red Sox is now going to a National team, the Marlins. Great. Now I got to deal with the likes of a guy’s name I can’t even begin to spell. You say it Perninski, but there is a z and J in there somewhere. I have to look it up and I am too lazy.