A little about my day and CRPS

I’ve had a rough day. Despite sleeping for most of it, I am still in a lot of pain. Have been in a flare since noon yesterday. I just can’t seem to get on top of the pain.

I was hungry when I woke up around 2. I didn’t want to get out of bed. I just left my room once in the morning to use the bathroom. I brushed my teeth as well. My mother called me saying she was going to my aunt’s for a party. I heard voices downstairs and wondered if it was the TV. I carefully went downstairs and sure enough the TV was on. I had a bowl of cereal.

Came back to my room and took my pain meds. Also took some neurontin hoping for it to help. I couldn’t get comfortable on my right side so rolled to my left. I must have been there for a bit when it felt like I was being stabbed in my ankle and top of my foot. My phone rang and I got a couple messages. My niece had called asking how I was as my mother was worried. I decided to order pizza and dessert. I shouldn’t have but fuck it. I wanted pizza.

The following is the myths and truths about CRPS:

Fact versus Fiction: the Truth behind the CRPS Myths

Like many other things out there that scare and confuse people, Complex Regional Pain Syndrome has spawned so many myths about it. The bad thing is, these myths tend to perpetrate beliefs to people who suffer from CRPS that leads to their detriment. Listed below are seven of the most prevalent CRPS myths that are circulating, and the truth behind the myths.

Fiction # 1: Complex Region Pain Syndrome is a very rare disease. You have a small chance of getting it. It is also a new disease.
Fact: Substantiated reports of CRPS have been recorded since 143 years ago. It was during the Civil War when Doctor Silas Mitchell Weir and his contemporaries first wrote about it. It was given many names such as Shoulder-hand Syndrome, Reflex Sympathetic Dystrophy and Post-traumatic Dystrophy, to name a few. The term Reflex Sympathetic Dystrophy was junked during 1995 when the International Association for the Study of Pain, or IASP, feels that RSD did not truly cover the signs and symptoms that the illness presented. They were the ones that coined the term “Complex Regional Pain Syndrome”.
Fiction # 2: CRPS is a localized disorder, and will not spread.
Fact: In as many as 73% of the recorded and confirmed cases of CRPS, the pain actually started in one part of the body, and then started to spread. In the worst cases, it actually affected completely healthy internal organs as well.
Fiction # 3: CRPS is a relatively quick disorder, and can be gone in as little as 6 months.
Fact: CRPS is like riding a bicycle. Once you get it, it never leaves you. At present, there is no cure, only treatment and maintenance to relieve pain, and even this does not work for everyone. There are a very few lucky ones who experienced remission, but found that even little to no stimulus at all could trigger a relapse.
Fiction # 4: The pain of CRPS cannot be alleviated by opioids.

Fact: Studies have shown that the use of opioids does actually help patients suffering from CRPS. Opioids can lower the level of pain significantly, allowing patients to be able to receive physical therapy. In some cases, they can even help the person lead a pretty normal life. Many patients would not be able to survive or bear the level of pain that they would feel if they were not given opioid treatments.
Fiction # 5: It’s all in the mind. CRPS pain is a psychiatric one.
Fact: The pain that a patient feels can actually register on a pain scale, and the symptoms that accompany it are also very tangible. The signs of the pain are all very visible, such as changes in temperature, color and bruising. Limb atrophy or contracture can also be seen. This myth is quite prevalent, as even some medical professionals put stock into it.
Fiction # 6: CRPS can only be caused by major injuries.
Fact: Records show that, surprisingly, CRPS is most often caused by small injuries or surgeries. The most common reasons given when asked the CRPS cause were sprains, broken bones and minor surgeries such as carpal tunnel surgery and removing a foot neuroma.
Fiction # 7: A definite sign to know if you don’t have CRPS is if you don’t get relief when you use a sympathetic nerve block.
Fact: Just because it doesn’t get affected, doesn’t mean it’s not CRPS. It could mean that your pain is what is called as SIP, or Sympathetic Independent Pain. For those who are suffering from CRPS that do get relief from sympathetic nerve blocks, they are suffering from SMP, or Sympathetic Maintained Pain. If you get a series of blocks, you may put your CRPS into remission. Also, it can result in longer periods of being pain-free. Because this myth is also a widespread one, many people have delayed seeking this kind of treatment, believing that they do not have CRPS.
Always take everything you hear with a grain of salt, and remember that the best weapon is knowledge. It won’t hurt to read and talk to an expert about Complex Region Pain Syndrome so that you’re better prepared to deal with it, and the life that comes with it.

Just when I think…

Just when I think I don’t have to kill myself, I can make it, pain proves me wrong. No matter what I do. I can’t hang in any longer.

I still have a date in mind. I don’t know if I have the capability to do it. I’ve failed before, what makes me think I can end my life this time?? If it was that easy, I would be dead by now. I am tired of hurting. My heart hurts too, physically
and emotionally. The pain is so bad it is giving me palpitations and sometimes chest pain due to anxiety. It goes away with Ativan so I know it is not a cardiac issue. Anxiety is such a bitch.

Someone is hammering my lateral malleolus. It has a name. funny thing though is that I have bony things on the medial malleolus which doesn’t hurt. Go figure that out. Maybe it is referred pain. Medical mystery…

Irritable Wednesday

All day I’ve been in an irritable mood. My mother never called me to put on her socks. Then she got mad at me because I wanted pizza for supper and I left the house without telling her. I picked up my scripts and the person at Walgreens was slow as molasses even though she has been there for a few months. Then when she was checking me out, she was having a conversation with the pharmacist that obviously was more important. Pissed me off because I was in pain from standing up. I was wearing the boot and it was throwing my hips off. I was just in a lot of pain and just wanted to be home.

I get home and it smelled of chemicals from the roofers. I had an asthma attack. Then I felt dizzy from the smell even though I opened my window. I had to go to my sister’s to get some air. I never ordered pizza. My brother in law was telling me stories about how the place is going out of business. I have yet to hear anything. He just has been hearing things from people so who knows if it is true.

My mother opened the kitchen window but the house still smelled. I opened the window in the dining room and in the hallway. I just need to close them because it is going to fricken rain the next two days. Guess I won’t be wearing my boot because my foot will get soaked.

Because I won’t be home tomorrow, my mother doesn’t want to put on her socks. I won’t have a wake up call. Yay! I can sleep in. I hope anyway. Hope this irritablility goes away. I know it is because of pain and possibly the bipolar stuff. I rather just be depressed.

Pain, not sleeping, and other things

I was up till 3 slept for an hour and then got up a few hours later. I was so tired. I was having serious pain where I have the part of my ankle that lost muscle (atrophied). Nothing was really working and standing was not a good idea. I think around 2, I decided to put the compression sock I bought on. It took about an hour for it to decrease my pain enough so I could sleep.

When I got up around 10 or so, I had some mini wheat cereal. When I poured the cereal, it just made a mess and I overfilled the bowl. Great. I picked up what was on the floor and then cleaned off the counter where shredded wheat had dropped. I put almond milk in my cereal. It was good. A couple hours later, I got hungry again so made a tuna sandwich with carrots and celery. It was really good. I didn’t end up using all the tuna so I will have lunch tomorrow or maybe a midnight snack. One never knows.

I then slept for a while. My mother called me to say dinner was ready but I didn’t get up. I slept for another hour. The house smelled like cabbage. My mother had cooked it. I was going to try it but the smell was bad when I took off the lid. No, thanks. I just had the spaghetti my mother made.

Now I am hoping to listen to the ballgame. My ankle is kind of sore. I had to take the sock off as I felt it was too long that I had it on. I’ve been having minimal pain most of the day. Hope it stays that way.