Tag: CRPS (formerly RSD)

Ankle Chronicles 7

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

area of pain

Ankle Chronicles 7

I saw my psychiatrist today. I told her that the pain that I have been feeling is causing the suicidal thoughts to come back, though in passing, nothing concrete. She wants me to call her if they stick around. I told her I would.

This pain has been going on since Labor Day. No matter what I do, or don’t do, I am in pain. Going up and down stairs is the worst. I finally had enough. I called uncle. So I will be seeing an ankle fellow in a couple of weeks because the head honcho doesn’t have any openings until December. This will be doctor number 14 that I will see for the same problem. Luckily, all my records are in the same system so I don’t have to carry around different records with me from different places. I might have to collect records from the podiatrist I saw, but we’ll see on that. I just know that I am in pain, nearly 24/7. And it is draining me. The past week I have been so miserable I don’t want to go out. And if I do go out, I want to go back home and soon. I need to keep my foot elevated to make it happy. But even that isn’t making it happy anymore. I just don’t know what to do except to keep on taking pain medication. And even that is losing its effectiveness.

I am seriously losing my mind over this pain in my ankle. It’s right below the bone on the outside. I forget the name of the bone and I am too lazy to google it. My PCP says it is a tendon. I know it’s a tendon. I have been dealing with this pain for a LONG time now. I know it’s the peroneous tendon and possibly, muscles, too. I don’t care what the names are. I just want the pain to stop. And I don’t want an injection of cortisone because I believe that it damages tendons more than it helps them shrink. I will NOT have another nerve block in that ankle because when it wore off, I was in agony for three whole days. I won’t go through that again.

I told my psychiatrist I was seeing a fellow rather than the chief and also a smartass remark. She came back with a “calm down”. How can I calm down when the very act of walking is being taken away from me?? Really?? I can’t go anywhere unless I walk. Down the stairs, up the stairs, go to the store, the bathroom, kitchen, etc. Each of these activities causes me huge amounts of pain, the stairs being the worst pain. I have to make conscious effort to hold my foot upright while going down the stairs and the same effort going back up. It’s DRAINING!!!! I have no more mental spoons or physical spoons to do anything else, like brush my teeth or shower. I got a haircut today and needed to shower but couldn’t so I just washed my hair. That hurt more than the shower would have. I don’t think my psychiatrist knows where I am coming from. Maybe she is tired of hearing me complain about my pain. It has been going on for three years now. I bet that is it. People are just so damn tired of me complaining about my ankle.

And I have a reunion to go to on Sunday. HOLY FUCK, I AM FUCKED. I will most likely be standing most of the time. SHIT! I didn’t think about this until now. I will have to wear my dreaded brace. It won’t help 100% but it will help some. I will be sore as hell after and possibly the rest of the week. Good thing I have nothing planned. I really want to see my old coworkers. They are the best bunch of people to know. I will carry with me my little book so that I can get their addresses to send them Christmas cards.

I am suicidal because mentally I just can’t deal with the pain anymore. It has gone on too long. I really need to go to Walgreens and pick up my prescriptions. Otherwise, I am going to go another night of no pain meds. I just wish I had the fucking energy to get them. I would have someone else go, but you need an ID to get the meds. Just great. I have to go. I guess I will stop complaining about my ankle for another day.

nuances of Chronic Pain

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, depression, mood disorders, suicide

Today has already been a long day. I again had weird dreams and then woke up before my alarm by at least a half hour. I didn’t do anything to wake up. I just went to the bathroom and then went back to sleep until the alarm went off. I should have grabbed a pop tart as I was hungry by the time I got dressed and stuff. I had my coffee and wrote until it was time to see my doc.

I am happy that I my PCP listened to me and gave me enough pills to cover me for the month. However, I am unable to fill it. I have to wait two days for my next refill. I had a feeling it was going to be too early and I was right. Fuck! I have two pills to last me 2.5 days? And then the pharmacist tells me they are changing the classification of the medication. I don’t know what that means. She said I would have to go to the doctor to get the prescription. Well, I do that anyways so I don’t see the big deal. They already ask me for my ID. Now if they need a diagnosis, they are getting cauda equina syndrome.

After my appointment, I felt a little energetic so I walked the long block to the other bus stop. I did it in less than 10 mins, which is good for me. It was 0.4 miles. I am guessing that is my limit without pain. If I walk more than that, then I am hurting, which is good to know. I didn’t have to walk back so that was good. I figure, if I can slowly increase my walk route, from where I walked before (1.2 miles roundtrip) I should be able to slowly lose weight and feel better about walking. But then there are days where just going around the block can cause me pain so I guess today is a good day. It started out rough because I was walking in mud. I didn’t think I would be able to walk to the bus stop when I left my house this morning. But after my doctor’s appointment, I had some energy and felt like I could do it. I know there are time I might not be always able to, but today I count that as an accomplishment. Now, to just hope that I am not hurting big time tonight and the next few days. My ankle is throbbing but it’s mild. I am not swearing, least not yet.

So I am disappointed that I can’t get the new script filled and that next month might be more of a hassle getting it filled. I knew these changes were going to happen. It’s all because a senator’s son overdose on narcotic medication. His belief is that the meds “caused him to commit suicide, not the pain”. What a crock. He is clueless so people with chronic pain now have to suffer because of this idiot, who is not even a medical professional!! I really “love” when these non-medical people make decisions for us. It makes treating chronic pain that much more difficult and no one many commit suicide because they cannot be helped by their doctors.

I did have a problem with making a month appointment with my doctor for next month. I just hope it isn’t too soon or too late. That is the problem that I have been having lately, getting an appointment with my doctor for my pain meds. It shouldn’t be this hard. So I have to wait for the secretary to call me.

I am glad I can walk the distance I did today. I hope that tomorrow I can walk again without pain. But we’ll see what happens tonight.

I just don’t know anymore

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

I just don’t know anymore

I have been in pain for more than 24 hrs now so if this is a little squirrely, that is why. I just cannot take the pain anymore. It is driving me absolutely insane. I spent the last hour or so writing in my journal things that shouldn’t be mentioned in the blog (stuff my therapist wanted me to write). I felt so ashamed afterwards. I was stuck with images in my head of the events that happened to me. I just want to be dead again. I know it has been at least a month since I last felt this way. Certainly was around the time of Robin Williams’s death. I felt like it was my turn. Well, dammit, why the hell not? I am so sick of being in pain.

I have tried to control my pain but my meds seem to be ineffective. I think I might have to take the stronger meds to break the cycle. But I don’t want to because the last time I took that drug, Jekyll appeared. I am wicked tired and all I want to do is sleep and I know that if I take this drug, chances are that Jekyll will come out. And god only knows what he will write. I find it odd that I have two “alters” and they are both male.

I didn’t take a shower today. I got a migraine and then things kind of went downhill after that. My pain worsened to what it is now. It is throbbing like a SOB and stabbing at the same time. It hurts right at the joint where my foot and ankle bone meet. That area is the most painful right now. I just want relief. I have contemplated taking the handful of pain pills that I have left. It will really suck if I take them because then I will have NOTHING. I know I am going to run out of my meds before the 28th of this month. My doc is supposed to write a 28 day supply but he wrote it for 30 days. Big help, not! I don’t know why I told him I needed less pills. But then, things were going well and I wasn’t in pain as much. The past few months have been awful and I keep meaning to tell him I need more pills because it just isn’t enough but I keep forgetting. Plus I am scared that he will say no. I doubt it, but you never know. I bet if my pain were under control, my blood pressure would be too.

I keep fighting sleep. I know that if I go to bed now, chances are good that I will wake up around midnight or 1 or 2 in the morning. I took my meds so I don’t have to get up again but I might have to go to the bathroom. I drank a lot of water at dinner because I am dehydrated. I didn’t eat too much, just had breaded cauliflower for dinner. I wasn’t that hungry. Which is good because I feel bloated.

My mother just struggled to get up the stairs. Her life would be so much better if she would take something consistently for her pain. But nope. Won’t even take a damn aspirin. Pisses me off because she always complains she is in pain. I refuse to give her sympathy because I know there are meds out there she can take but she won’t so there.

I have the ceiling fan on despite it being cool outside. I have been having hot flashes for most of the day. It is only about 70 degrees in my room so I don’t know why I have to put the fan on but I am hot and I hate being hot. I think it is because of the damn pain I am in. 24 hours. I didn’t even do too much yesterday so I don’t know why I am in so much damn pain. But I guess walking is my downfall. And my sister thinks I will be able to walk a dog. Please. I can barely get to where I need to go without hurting myself and you want me to take care of an animal?? NO. Not happening. Get a cat. I will clean the litter box twice a day. That I can do!

I don’t know why I am in so much damn pain. It’s not like I did anything today. I didn’t go up and down the stairs too much, but maybe I did. I never know what is minimal and what is a lot. My body doesn’t bother to tell me until it has surpassed its limit and then tells me the next day or later that night when I want to fucking sleep. It is terrible. Normal ankle movement should not bring you such pain!!!

The only thing keeping me sane right now is listening to music. I need that muse in my head because without it, I think I might do something drastic.

Don’t dream it’s over

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

Don’t dream it’s over

I heard this song today and am reminded that despite a long road to recovery, I am still stuck with the condition known as Cauda Equina Syndrome (CES). Today I talked a lot about it in my interview with the 1st years of medical school. There were like 5 or 6 students and three physicians in the room, one of whom was the person that interviewed me. He knew nothing about CES as he didn’t ask me one red flag symptom. He was an older gentleman so I am sure that he never heard of such a syndrome before. My psychiatrist was grateful I brought it to the students. She said she owes me one. But I don’t really know what that means. I just laughed because it was fun doing the interview.

My therapist read the last blog post that I sent her. She said that I summed up my traumatic experiences all in one paragraph. This left me feeling like “what is she talking about” so I had to read it. I always feel like my writing is cathartic so once the words are in a word doc or a piece of paper, they quickly lose their power in my memory banks. The paragraph was powerful and I couldn’t believe I wrote what I did. It made me wonder if I am ready to face the trauma I have endured over my lifetime, just one piece of it anyways. It is something that I have not discussed in great detail, not even with my therapist. But there is a song that keeps reminding me of what I went through and so it is on my mind a little more these days.

I have a beef with my doctor’s office. I saw my PCP’s Nurse Practitioner (NP) for a blood pressure check. My blood pressure is still in prehypertensive range. Not good. So instead of playing with the new blood pressure med I am on, she decides to add another medication. WTF. She was almost a half hour late so I couldn’t argue as I had to meet with my psychiatrist, and even my psych was like why am I being put on a third medication for the same condition?? I emailed my doc’s office to sort this out. I am not going to take it because it also acts as a diuretic, something I don’t need to be on. I already have issues with my bladder leaking and me being on something that is supposed to make the kidneys work better just isn’t going to fly with me. I also said that in the email, about the leaking piece, not about it not flying with me. I have enough problems and don’t really want to start wearing pads or diapers. So far I have been lucky to avoid them, but I think on days that I am going to be out more than a few hours, I might have to consider wearing them. I would use pads but they just don’t fit in boxers. I really feel bad for men who have to use tighty whities for pads. Least that is what I think they would have to wear. But I hate them as much as some men do.

I was talking to a friend today about a CES issue. She didn’t reassure me and said that I should talk to my neurologist about it. I haven’t seen her in over a year. And this issue I rather not be apart of my medical record. So now I am conflicted on what to do. I don’t even know if going to my neuro will help me with the issue. Course the easy thing is to stop doing what I am doing to cause the issue and problem solved! But I don’t know if I am having more nerve damage or not by ignoring the issue. What worries me is that I have a disc that is touching the nerve root of my issue. It isn’t compressing the nerve root so no one thinks I should have surgery. Although I am not advocating for more surgery as I most likely will need a fusion, I think that might be why I am having my issue. Either that or my nerves have suddenly have become awakened and now I just got to deal with them. Either way, it doesn’t look promising to me and it is an especially embarrassing topic for me. If I do see my neuro, at least I won’t have to mail her my book. I could just hand it to her!

The thing about my neuro is that she is great and all but her office staff sucks like yesterday’s garbage. Making an appointment is always a hassle, getting through to the office is always a hassle and then if I don’t have the copay, they cancel my appointment. Last time, they told me the wrong day of my appointment and I got charged for it. I have not paid it because they screwed up, not me. If they didn’t change the original appointment to begin with, none of this would have happened.
It has been a month now that I have been on an antidepressant. Since that time, my suicidality has decreased dramatically. I might not be euphoric, but I am doing okay. I don’t have mood swings like I used to. My sleep is still wonky but it’s better than it has been. The only sucky thing is that no matter what time I go to bed, I am always up before six. And on days like today where I had to be all over the hospital between my two appointments, it sucks. Even though I worked there for fourteen years, I goofed and made a wrong turn, thinking it would take me to the building I needed to go. NOPE. No access from the 2nd floor. It sucked because I then had to walk back to where I came from to go outside to get to the building I needed to be in. Lot of walking today. And my ankle is thanking me, oh so kindly. NOT.