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.

Overextended myself today

I made it downstairs for dinner. Made a second plate and my foot went ballistic. Took me an hour for it to settle just so I could stand. My youngest sister was up the house. I reached the stairs and she said why am I in pain with “all the pain meds I take”. She doesn’t get it & I was hurting too much to explain. I just shrugged and climbed the stairs to my room. My mother wanted me to sit on the couch but I couldn’t sit anymore. I needed my bed so I could put my leg up. I wish they would research what I have rather than jump to the conclusion I am on meds so therefore I am “better”. I honestly don’t know if I can make my appointments next week. I know I overextended myself today. Just hate that my family doesn’t support me as much as I support them.

and I’m in a flare. Shower was the killer. Thought I could do it. I am so sad. Why does activities have to be so damn hard? Why do we have to choose spoons every single day? So sick of this. And now I got to choose my pain meds or I will run out by the end of the month due to “complications and harms”. I am so bullshit.

Fuck a duck. After my coffee, I decided to get the ingredients for the buffalo cauliflower bites. Then went to the meat shop for steak tips and pork chops (pork chops were on sale). Went to the wine store for my mother but they didn’t have her wine. Barber didn’t have my baking dish so I just went home. Fucking cauliflower and other shit was heavy. My arm and back hurts. Forget about my damn fucking bastard ankle. Even though I wore the boot, it is still angry. So damn tired. Least I have dinner for tonight. My mother was happy I got the pork chops. Just need to make mashed potatoes and dinner will be good.

Sorry this is out of order. Just cut and pasting what I posted on FB today. I took my pain meds and night meds so I am kind of goofy and sleepy. I did a lot going to the stores but the shower really killed me. Hope I get some sleep and don’t throw up.

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…

Despite morning rain, a sunny afternoon

Despite morning rain, a sunny afternoon

When I woke up at six this morning it was still dark and raining. I used the bathroom and then checked the weather report. It said it was going to be raining for most of the day. I thought it was just supposed to be yesterday and that was it. Guess I wasn’t getting all my errands done. I planned on just going to the bank for my mother and then pick up my meds at Walgreens. I took my morning meds and set my alarm so I wouldn’t sleep all day.

I woke up just before the alarm went off. I didn’t want to do a damn thing. It was a bit brighter in my room but that could be deceiving. I got up and decided to shower. Then I would eat something. It was sunny out and warm. I would be able to do all my errands. I showered and my foot didn’t act up. I was hot though. I heated up a burrito that I had made. It was really filling. After I ate, I went up to my room to get dressed. I wore jean shorts. I have no idea what happened to my belts. They are only on two pairs of pants/jeans. I have 3 or 4 belts so that means 1 or 2 are missing. I just wore the shorts without the belt. My phone would have to go in the cargo pocket.

I got my packages and my mother’s bank book (yes, bank book, she doesn’t do anything electronically) and left. I had also grabbed the screen that needed to be fixed. I went to the post office first. I forgot the customs form that I had already filled out in my bag. I filled out another one. Then I got a box for the thing I was mailing. I also mailed the card for my friend in Canada. It needed postage as I didn’t have enough on it. I have no idea what the postage is but the lady put like three stamps on it, in addition to the two I had put. I paid then waited for the bus to go to the screen place down the street. It was too long for me to walk.

I didn’t have to wait too long. I got to the screen place and the lady said she wasn’t sure she could fix it and it might have to be replaced. I asked how much it would be and she said between $60-70. I was expecting that much. They said they would call me. I missed the 1330 bus. The next bus was to the Square and I debated going to have espresso. I decided to get it so stayed on the bus. When I got half way there, I ordered my drink and some Danish. I don’t know why I ordered it as I wasn’t hungry. I will have it for tomorrow as I didn’t eat it.

I went to the bank and then to Walgreens. I bought some facial stuff as I have a breakout of blackheads on my nose. I had an astringent but it smelled really bad. I tossed it as I figured it was expired. I wanted to get a facial bar and scrub sponge. It took me forever to find the sponge as I didn’t remember who made it. I finally found it as I almost gave up. I should have bought a soap holder but forgot. The bar that I bought breaks down quickly when wet. Hopefully I won’t have to use it for too long. I hope to get my haircut tomorrow. It’s the only thing left to do this week, oh and get my T-Pass.

My Amazon package had arrived when I came home. I had ordered my sister the cappuccino that I like as I used her last few packs. I also bought my brother in law the tea that he likes. I forgot I bought my mother the tennis ball gliders for the walker so it wouldn’t make so much noise. Putting them on was a bitch. They worked though.

I kind of caught the last of the game last night. Seems the Sox and the Bruins (hockey) were behind and came back to win. Hoping for another win tonight. Sale is pitching. He didn’t do well last time out, but then he was up against an A’s pitcher that no hit.