Category: Chronic pain

CDC and Chronic Pain

by Midnight Demon, posted in cauda equina syndrome, Chronic pain, chronic physical pain, suicide

“I invite chronic pain patients who rely on medications & are still alive, to offer their expertise to the public conversation.”
Terri A. Lewis, PhD

This statement just rubbed me the wrong way. In fact, it infuriated me because there are so many people taking their lives because they DO NOT get medications due to the opioid policies some doctors have. The CDC is proposing that primary care doctors PCP’s no longer prescribe narcotics for their patients. I haven’t read the report but it was stopped only because a lawsuit was threatened if it was published. The guidelines were written by people that had NOTHING to do with chronic pain. Therefore, it didn’t make sense for them to have these guidelines. I would write to them but I fear that if I do, I will be prosecuted for my actions down the line. Call me paranoid. I only take 4-6 pills a day and if that were cut, so would my life.

The statement also implies that taking these medications is a death sentence waiting to happen. This isn’t true. There are plenty of people who SAFELY take these medications daily and are still alive. Yes, there are some that do NOT because they go to different doctors and the combination of other opioids makes them sick. My ex’s neighbor died from an overdose because of this. Had one doctor been prescribing, her friend might have lived a little longer. She was terminally ill with something other than cancer. Obviously, she is the one that is “not alive” to come forward about these supposed guidelines.

If Primary care docs can no longer prescribe these medications, where are chronic pain patients supposed to go? “Pain clinics” only want to experiment and give injections, usually because it’s more money than writing a script. I have seen two pain doctors and they both didn’t want to take over the pain management I was under. They just offered invasive procedures and when I refused, I no longer was a part of their care. I’m sorry but there is no research to support that the injections would benefit me. I wish I kept the report that contradicted the injections. There was an article a few years ago that said that it was more dangerous to have them than not. I am not going to risk have something called arachnoiditis for the sake of a pain clinic writing a script for my pain meds, when the pain meds already work for me.

I need to have my primary care doctor continuing to prescribe me these medications. It’s safer and easier than seeing a specialist. The meds help me to function better, though I rarely take them when I am outside the house. They make me too drowsy to get on the bus and train. So I suffer through my pain to get to where I need to go. Taking my four tablets a day is not killing me. It’s keeping me alive enough to see another day. Because without them, I would seriously end my life. And I don’t think the CDC wants that.

A letter to bozo

by Midnight Demon, posted in bipolar, Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mental illness, mood disorders, physical pain

Dear Bozo,

It’s after midnight. I am really tired but I am in a lot of pain. I am feeling depressed because a fellow blogger wants to end her life. I have become good friends with her and it makes me sad that there is nothing I can do for her except be there. I hope she doesn’t hurt herself tonight.

Sox are back in last place. I feel like I am, too. I feel like I am at the bottom of the barrel and I can’t get out. The shit just keeps piling on and I can’t get out from under.  Foot is absolutely killing me despite taking pain meds. I just took some ativan because I got a cramp in my other foot. That is all I need, both feet to be against me. I am such a shit.

I’m supposed to go out tonight with some friends. I always have a good time even though it wears me out. My friends don’t know this.  I have never told them. They are the only friends that I have kept in touch with since my disability and loss of work. I would hate to lose them or be left out of having dinner with them once in a while. It really is the only time I socialize.

I just don’t know what has brought on these feelings of worthlessness and insecurity.  Someone liked my commonalities of suicide and placed it on Reddit. Whatever that is. I have heard about it but don’t know more than that.  I just know I feel like the biggest asshole on the planet right now. If I was suicidal, I’d probably plan something. It gives me comfort knowing I am going to try and end my life. I don’t know why that is.  Maybe because it gives me an option and a way out of this darkness. I am so tired of fighting it. Why do I have to continue to live when I don’t want to?  It’s your fault I’m still here. And I hate you for it right now. I hate this guilt trip you have me bonded into. I don’t want to hurt you, yet you say that I will if I kill myself. I just want the pain to stop. If the pain stopped, both physically and mentally I wouldn’t be thinking of ending my life. I am just a scumbag that doesn’t deserve your care.

I didn’t bring the depression on. Unless the pain meds did, which they could have. Course, I am very tired right now and fear that if I don’t go to sleep soon, Hyde might come out. So I’ll stop here for now.

But before I do, my CES anniversary  is coming up in two weeks. I am feeling anxious about it for some reason.  I keep having the memory of when I was told and having to pull over because I was driving to see you at the time. How I managed to drive without injuring myself I have no clue. My back was pretty bad. I still think if i didn’t get it the 2nd time, I wouldn’t be disabled like I am today. I have huge anger that I don’t know what to do with. The stages of grief I guess. But I refuse to accept this. This should not have happened. Someone should have noticed me walking improperly after all those PT sessions I had. Maybe I should have been in an AFO then. I don’t know.  It’s all hindsight now. And it makes me very angry.

I know I’ll never be normal again, that I think I can live with. But being in pain is not part of the deal. Especially when they are making it harder to get pain meds. If I dont ever get my meds, it will be my death sentence.

Random 582

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

There is a new screening tool for suicide assessment risk that people in Australia created. I read the study to the point where they said that even though the SSF is “the gold standard” for clinical work, it is “inconvenient” as a research and screening tool because of the qualitative answers. Soon as I read that, I stopped reading. Then I skipped to the back where they had the questions and literally laughed out loud. It DIRECTLY asks if you are going to attempt suicide someday. All I could say was “duh”. Can’t get more direct than that! No wonder it is a “great” screening tool. But more astonishing than that, there were over 1000 people who volunteered for this study with “no funding as reported by the authors”. HUH?? How can you conduct a large research study and have no funds to do it? It just sounds suspicious to me. I do like the screening tool and think that it will be valuable, if people in the US actually fucking use it. I have place it here ABCs of suicide risk assessment so you can form your own opinions.

Tomorrow is approaching faster than I would like. In less than twenty-four hours, I see my pdoc to discuss how things are. I still feel dejected. I really don’t want to be here but what choice do I have. If I say that I am still going through with my plan, my pdoc will take measures to ensure my safety. And I really don’t want to go to the hospital. It’s a pain in the ass in all accounts you can possibly think of. Sure it will keep me from myself but I have been doing fine with that the past few weeks. If I was going to do something, I think I would have done something by now. I will just take some Neurontin and sleep. This is the only drug that works for me to zone me out. And it’s safe as it leaves your system in eight hours or so. Only thing that sucks is that it can give you a hangover. But that is why they make coffee. I will NOT go out to Starbucks like I did last Saturday. The days where I trust the T are over after I got stranded in the Square last weekend. I don’t know what I would have done if my sister wasn’t home that day.

I still need to write a letter to my therapist today. I probably will do that later tonight. I was in a “Hyde” mood last night that got broken up by a fellow blogger checking in with me. We chatted until I couldn’t keep my eyes open anymore. It was late, past 0100 my time. She is on the west coast so it was “early” for her. I think there is a three hour difference in our zones. It was helpful to talk because we randomly talk about anything and everything. She was in a hypo state and I was trying to keep up with her typing but because I had already taken my meds, I was slow.

It’s finally a cool day. No humidity and medium temps. I like it when it’s in the late 60’s, early 70’s. It’s perfect walking weather. And I did some walking today that my ankle didn’t like. But oh well, I had to walk from A to B to get to where I was going. There was no other way to get there but my own two feet. And it was too short a distance for a cab. It would cost too much and besides, by the time the cab came, I would be at my father’s apartment. But the streets are level so my ankle didn’t like it. I had inclines and broken pavement to maneuver. I was supposed to go to the post office today to mail the first packet of letters for my therapist but I forgot the letters at home. I was mad at myself. I will have to do it tomorrow before my appointment with my pdoc. I will have plenty of time as I will be in the Square at least an hour before the appointment.

I am feeling really sad about not being able to kill myself. I am also feeling angry because I am being made to live a life I don’t want to. With all my pain that I experience, both physically and mentally, I just cannot take it anymore. I feel stupid for letting my treaters know of my plans. Maybe my ambivalence is what made me tell them. Or my fear that I wouldn’t succeed anyway. I am going to be grumpy the next few days. I already am grumpy and upset but even more so. I hope I don’t wake up tomorrow morning, that I die in my sleep. But that doesn’t happen in my family. They just die of old age. I don’t want to live to be old. I will die one day and it will be soon. I just don’t know when.

Pain and Anxiety

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

Pain and Anxiety

Last night, I took my normal pain pills around 2200. At midnight, the pain got worse. My heart rate shot up and I became nervous, again. I had already taken my night meds at the same time I took my pain meds. It was too early for me to take my normal pills so I had to take a stronger pill. It took another hour for the pain to fade enough for me to sleep. I also took an Ativan to calm down. I spoke to my doc about this and she said the anxiety is the body’s response to not liking pain. Great. Now I have to deal with anxiety on top of my other problems. I don’t like being anxious or nervous. It really irritates me and makes me feel unsafe, like something terrible is going to happen. I have to mentally play with ideas of it just being a physiological reaction, that I am okay, even though I don’t feel that way. It’s very hard to mentalize when your heart is pounding like you ran several blocks. I don’t become out of breath but my breathing speeds up. I have to take deep breaths to calm down, or try to. It’s very difficult to do. And it also makes me feel helpless because other than taking drugs to stop the pain and anxiety, there is nothing I can do. I am not hyperventilating so breathing into a paper bag won’t help me. Music helps to a degree but not all the time. After a while, it just becomes background noise.

I have not been trained in any capacity to deal with anxiety. I don’t know how to deal with it other than take medication. But even then, I have to wait a half hour or more for it to work. In the meantime, I am very nervous, in terrible pain, and keep wondering what to do. I can’t walk because the pain is too intense in my foot, so pacing is out of the question. I usually just have grin and bear it. I don’t like doing this. It just messes with my head. And then I become agitated, which does me no favors. Last night, I tried to read. It didn’t work so I tried writing in my journal. If I could have done something physical, I would have but writing is the only thing that usually works when I am anxious. It is my go to whenever things are going wrong, or are perceived to be.

All this bullshit could be avoided if I didn’t have this pain syndrome. I didn’t do too much yesterday so I don’t know why my foot decided to explode at midnight. I had been resting for hours, but I got hungry and went downstairs to have something to eat. When I came back up stairs and propped my foot up, I got hit with the pain wave. Other than amputation, I don’t think there is anything I could have done to avoid it. I just don’t understand why because I had taken my normal pain meds two hours before hand and that should have avoided a 10+ pain flare. But that is the thing with pain syndromes. You never know when they are going to spike.

I need to pick up my niece later. I plan on ordering pizza before I pick her up. This way, the pizza is a little cooled off before gobbling it up. The last time I had pizza with my niece, she ate half a box! It was crazy but she was hungry. She ate all of it too, crust and all. She is too funny but is still growing like a weed. I just hope that walking to her school doesn’t aggravate my foot more than it already is. I really don’t want a repeat of last night. I have my appointment with my psych tomorrow so I really don’t want to be really drugged up or sleep deprived when I see her. It’s in the afternoon so I should be awake enough when I see her, but sometimes after a bad night of pain, I am not in a good mood the next day. Only day that I don’t have something planned is Saturday. I can rest all day then. I still need to finish my editing, which includes proofing what I have written and then putting those edits in the word doc. I have stuff to take out too, as one of my stories is listed twice, but under a different name. Don’t know how that happened.

So pain and anxiety is not a good thing for me, or anyone, really. Pain causes the anxiety and I don’t like it one bit. It makes me feel helpless. My therapist is on vacation for the next two weeks. I am to write her a letter and text her while she is away. She also wants me to send them to her so when she is back, they will be in her office. We talked about the anxiety part but really didn’t talk about what to do with it. She just wants me to take an Ativan. I am just afraid that I will become addicted to it, which is why I am so hesitant to even take the pill. But I guess, I need it so my heart rate slows down and calms my nervous agitation that doesn’t do me any good. I swear the pain is like drinking five cups of coffee the way it makes me feel. I just wish I had more control over it but I don’t and that is what is so frustrating! I hate not being in control. Pain takes that away from you and then your heart rate soars up and makes you feel even worse. So you are battling the demons in your head, the pain in your foot and the nervousness of it all because it’s a physiological response. How the hell do you combat it?? I guess I am going to have to research what to do about anxiety, an unknown entity to me. I never was an anxious person until pain entered my life. It doesn’t happen ALL the time but when it does, holy hell! I am noticing it more with each pain flare up. I really wish I had better control of my pain, like if I had a warning before the pain would flare, that would be awesome. But I don’t. It’s one minute low level pain and the next high level pain. Sometimes it is because I moved my ankle, either flexed it or moved my big toe. That is all it takes to set the pain off in my foot and/or ankle. It just sucks not knowing when to expect severe pain. It’s the million dollar question that no one can answer. And I am not okay with it, not one bit!