Category: Chronic pain

Rare disease awareness week–Cauda Equina Syndrome

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

Rare disease awareness week

This week is rare disease awareness week and I thought I would write about one of my rare conditions called cauda equina syndrome. The syndrome is comprised of different symptoms when taken together requires urgent attention. At the end of the spinal cord, there are a bundle of nerves that resemble a horse’s tail, thus the name cauda equina. When these nerves are injured or compressed due to disc material or other trauma, they can cause serious damage. For those having back pain, it is important to know what the red flags are so that emergency surgery can happen to prevent further nerve damage that could become permanent.

They are:
• Loss of sensation of one or both legs
• Loss of sensation to the genital area or saddle area (basically between your thighs)
• Incontinence of bladder and/or bowels
• Retention of urine
• Weakness or numbness in one or both legs
• Severe back pain

Not everyone will experience all of these or might have some. It is important to get an MRI when you have a few or all of these. Don’t think that just because you don’t have all, you don’t have cauda equina syndrome. I only had severe back pain and weakness and numbness in my leg when I was diagnosed. Some docs think that you need to have bowel or bladder involvement to have this condition. THIS IS NOT TRUE!! The quicker you have the MRI and surgery, the better your chances for recovery. You have about a 48 hour window to avoid permanent nerve damage. It is important that you have a competent surgeon, someone who does spines. I prefer a neurosurgeon over an orthopedic surgeon because the neurosurgeon will have a greater knowledge of the nerves. That isn’t to say an ortho can’t be just as good. If the ortho only does spinal surgery, you might be okay. Just be sure they are board certified. You can check that out by checking on this website http://www.abms.org/verify-certification/
This is only in the U.S.

If you have been diagnosed with cauda equina syndrome, you may have a lot of questions about recovery. It is a multidisciplinary approach, from physical therapists, occupational therapists, urologists, neurologists, etc. It is important to know you are not alone and there are support groups out there. I have had this condition twice, which is rare. I had it at two different levels. Everyone that I have met with this syndrome does not have the exact symptoms or damage following surgery, even if the level was the same. It take a long time to heal from nerve compression. Don’t give up hope. Regeneration is a time consuming process, but with the right amount of physical therapy and home exercises, you can recover in time. It took me two years before I was able to get off my medications until I was hit with it again three years later. It took longer for me to recover but I knew what to expect because I had the support group behind me. No one is a cauda equina syndrome expert, not even the best doctors. Little research is done in this area. There are stem cell research going on for those that have paralysis and that gives us the hope that some day our nerves can be helped.

Check out my pages about cauda equina syndrome if you like to help you learn more about it.

Woke up at 3 in pain, yay!

by Midnight Demon, posted in Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, disability, mood disorders, painsomnia, physical pain, suicidality, transgender

I knew I was going to wake up when my pain med wore off. I thought the neurontin and Ativan would cover me. I was wrong. I have such intense burning going on and there feels like a little ball of pain toward the middle of where my ankle and foot meet. This is a new pain. Got to love CRPS and all the different pains it gives you. It is never the same pain twice, usually.

I just had some cornbread so that flared things up because I had to go down then up the stairs. I was hungry. I have decided to give some of my casserole to my barber and his pal. There is no way I can eat it all myself.

My big check came in so I paid my bills. Now I am broke again. Easy come, easy go. Sucks being an adult.

Pain is awful. I really wish I could have a break, if only for a few hours. I got into such deep despair last night because of it. I thought of ending things once again. I just don’t have a place to do it. I need to find one. I haven’t 100% made up my mind to do it, but having a place would ease the anxiety. I just feel everyone would be better off without me. I feel so useless. I can’t function anymore because I am not sleeping well. These broken sleeps are making me feel like shit most days. I’m never going to get better.

Been having a lot of gender dysphoria the past few days. My mother has been calling me miss and even though I correct her, she doesn’t care. I asked my sister to call me her brother and she said if I want to. I’m getting frustrated with the whole pronoun thing. If I didn’t have breasts, it might be easier. I don’t know when I can have top surgery or if my insurance will pay for it. I’ve been too scared to call and ask. I will ask the LGBT doc when I see him in a few weeks. O hope I don’t have to lose weight because that will be a hard battle. I’ve only gained weight because of my meds. I know I don’t eat right. I’ve been thinking of joining Nutrisystem. It is a weight loss program but I don’t think I can afford the food. I’ll have to look into it. I have other stuff I need to get done before I spend like $300 on food to lose weight.

I wish my breasts were smaller than they are. Women in my family have such huge breasts. I hate them on me. Actually, I think loathe is a better term. If I could cut them off myself, I would. Also been wondering if I should get a penile operation. I don’t know. I guess in time I’ll figure that out.

I requested my records from the pain clinic to see what they wrote about me. I think it is important for me to know. I have every right to see my records. I hope they come soon.

Low key Saturday

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

I still had the same pain I’ve been feeling all week. I didn’t have anything to do but go to Walgreens to get my meds fills, and even that I didn’t want to do.

A few weeks ago, I was reading an article about how fish oil combined with an anti depressant helped to ease depressive symptoms. I tried to find the highest dose of EPA and DHA but couldn’t. So I just got a high dose of fish oil. It came a few days ago. I took one that day and was going to take it everyday but forgot. I remembered this morning so took it. It is a huge pill. Thankfully it doesn’t have any fishy aftertaste. I’ll put it in my med box for the week when I fill it tomorrow.

I had cereal for breakfast and then I made coffee. I was going to finish it then go to the store but decided to take it with me. I just put on a pair of sweatpants, grabbed my mug, and left. It was warm out so I was glad I didn’t wear a jacket. A lot people came to get flu shots. I waited for them to fill my meds and then walked home. My ankle was feeling like a rod was going through it. I’ve had so many different types of pain this week. I haven’t done any of my PT exercises. I just don’t want to make the pain worse.

My cousin with bipolar disorder invited me to have dinner at his house. Pain in the ass has called me 3 times today to confirm. He woke me from my nap. I thought he wanted me to come early so when I was a little more awake, I called him back. No, 1830-1900 is still on. WTF. He wasn’t even home the ass. I hope it goes well. I just worry about getting to his apartment as he is on the 3rd floor. That is a lot of stairs. I’ll probably take a shower when I come home as he is a heavy smoker.

I don’t have any plans for tomorrow. I might make a zucchini bread as I bought zucchini. I also want to make a pumpkin bread. I just haven’t had the energy to make it. A friend of mine gave me the recipe. Maybe if I feel up to it, I’ll make both.

Lunch with a friend and other things

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

I went to bed around 3. Pain was being such a fuck. I was getting hopeless and depressed. I sent my psychiatrist a message but she never responded. I see her Monday. I hope that she understands what I am going through.

I woke up around 6 and then around 830. I didn’t want to leave the comfort of my bed. I didn’t have to leave the house till around 1030. I had a list of things to do after I saw my friend for lunch. It would depend on how much pain I was in but I would try.

I went downstairs to put the groceries away. The delivery came and I just put away the frozen and refrigerated stuff. I left everything else as I wanted to sleep. My mother was up. She asked why I left the stuff and I told her why. I did three trips to the kitchen, my office, and the back porch. I was exhausted afterward. I didn’t feel like showering. I went upstairs and got dressed. I brought my tote bag with me as I didn’t feel like carrying my backpack. I grabbed my mug for coffee. I needed coffee.

It was cold and the wind made it colder. I didn’t wear my scarf. I wish I did. The bus seemed to take forever. It finally came after twenty minutes. I thought about ordering a mobile order for Starbucks but I didn’t know what I wanted to drink. Even when I got there, I was staring at the menu. I finally decided on a toffee latte and a cheese danish.

I brought my journal along in case I had time to write but I didn’t. I took a few sips of the latte to make room for the lid and then left for the train station. As I was walking to the station, my friend messaged me about meeting 15 mins later. That was no problem. I waited for her at the restaurant.

We had a good time catching up. The food was good. We talked about all kind of things. The last conversation we had was about our friend who died by suicide 2 years ago. It was something we were hoping to avoid but couldn’t. Chris was a close friend to her than I was. She told me aspects of his life I didn’t know and it made me angry the his partner treated him wrongly. It was sad that he took his life for reasons only he would know.

My friend and I parted. She went back to her building and I went off to do my errands. I literally went around one big circle, with the train station being the starting point. I did all the I wanted and added one. I made an appt with a new eye doc as my doc retired. I need new glasses as I have been having trouble reading with the ones I have.

I went back to the Square and froze as I waited for the bus. I missed the 1420 so had to wait for the 1520. It was on time. I was feeling ok pain wise. Least I was until I got up at my stop. Then it felt like a rod went through my ankle. I limped the rest of the way home.

I got home and there was mail and some packages for me. I brought them inside, sorted them, and then dashed up the steps. I needed to use the bathroom. It was too late. I wet my pants and I wasn’t happy. I changed and then opened my packages. Some were for the kitchen as I bought a new electric can opener. Hope it is easy to use. The rest of the stuff I brought upstairs. My feet were ice cold. I put on a pair of socks. My mother was making the cod I bought yesterday for dinner. It was really good.

After dinner I was really cold and sleepy. I decided to take a nap. I wasn’t expecting the door bell to startle me awake. I woke up all disoriented, not knowing where I was or what time of day it was. I was still cold. I didn’t go downstairs to see what was going on. I snoozed for a bit before my bladder told me to get up again. I went downstairs and it was really cold. I turned up the heat a notch. Probably will regret it but least I’ll be warm!