Tag: CRPS

rambling 60

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

I really have no gas today, despite waking up at the god awful hour of five. I had no reason to be up at this hour, other than a slight pain on my pinky toe. I must have had a blister on it or something and it dissipated but I am left with pain. Thank you nerve pain. You cannot tell me that my foot isn’t messed up with mixed nerve signals anymore. There is just so many random things that happen with it. One minute (or more than a few) it is ice cold, then next burning red hot. Other times it is throbbing like I bang it or something. I gave up trying to figure out what I do to make it hurt the way it does. If I stand it doesn’t hurt too much but then I don’t feel the pain right away so who knows. If I walk too much, I won’t know until the next day if I did too much. I just never know what it is going to be. And then I will have a day or two of no pain. Of it acting like my right foot except for the constant tickle that I feel everyday, which is manageable, I hardly know my foot is there.

But I do have to be protective of it. I have to make sure I don’t expose it to extreme temperatures, too hot or too cold and I am going to hurt. I give up. Yet I suffer either way. It just feels so hopeless. And I have become helpless. All I can do is take my pain medication. It is the only thing that helps me. No other medication has helped and I have been on several.

It looks like I might be in the clear with the menses situation. I hope so. I am starting to feel a lift in my mood and that usually changes when things stop. I hope so because if I have another suicidal attack I think I will act on it this time. I just am so tired of fighting it all the time. I know that will push my book back further but what choice do I have? I also know that attempting might mean a hospitalization longer than two weeks and mean that I might spend the holidays inpatient. Oh well, not like that hasn’t happened before. It will be 18 years since my last serious suicide attempt. I still remember it as if it was yesterday. But things were different back then than they are now. Treatment in the hospital is like an inpatient office visit than an actual helpful place. Your “team” meets with you for fifteen minutes and that is supposed to help you? So if you start feeling better to the nursing staff, and they feel you are not a threat, you go home. That is how is works now. No doctors making real decisions, sure they cover it so that it looks that way but it really isn’t.

I am not sure I want to go in the hospital with an attempt. They watch you closer than they do when you go in without one. And you get out quicker. I have yet to see someone attempt and be out in three days time. I am sure it happens but not at the place that I go.

Regarding my book, for those following my blog: I did one paragraph today and organized my ending a little bit. I want to get it to be at least eight pages long so I have four pages to go before that happens. I will work on it tomorrow, I hope. If my motivation comes. I have to see my pdoc tomorrow so maybe I can do some writing before hand.

about CRPS

by Midnight Demon, posted in chronic physical pain

Very interesting article I found from the Facebook page about CRPS

The lack of awareness about Complex Regional Pain Syndrome has led to many myths. These myths can hurt the perception of CRPS that other people have. Here are seven myths about CRPS and the facts to dispel them.

Myth #1: CRPS is a rare/new disorder.

Fact: CRPS has been around for approximately 145 years. Doctor Silas Mitchell Weir and his collegues first wrote about CRPS during the Civil War. Some of the names it has been known by are: Causalgia, Post-traumatic Dystrophy, Shoulder-hand Syndrome and Reflex Sympathetic Dystrophy. In 1995 the International Association for the Study of Pain(IASP)felt Reflex Sympathetic Dystrophy did not adequately represent the whole of the disorder. They changed the name to Complex Regional Pain Syndrome.

Myth #2: CRPS does not spread.

Fact: In 70% of the cases of CRPS, it spread from the original location. It can affect any part of the body, including internal organs.

Myth #3: CRPS will go away in six month, a year, or 2 years.

Fact: Once you have CRPS, you have it for life. There is no cure and at this time, the treatments for this chronic condition do not work for everyone. If you are one of the lucky ones who go into remission, it can come back if there is another injury or for no reason at all.

Myth #4: Opioids do not help the pain of CRPS.

Fact: Using opioid medications can be very effective in lowering the pain level. They are used to help control the pain level in order to allow the patient to go to physical therapy. They also allow a patient to have a somewhat normal life. Without them, most patients would not be able to move or participate in daily life.

Myth #5: CRPS is a psychiatric disorder.

Fact: The pain is very real, as are the symptoms associated with it. No one can see the pain, but there are physical signs such as, color changes of the skin, loss of hair, and osteoporosis. Sometimes atrophy or contracture of the limb is also present. This myth is widespread among medical professionals.

Myth #6: Minor injuries do not cause CRPS, only major ones do.

Fact: The number one cause of CRPS is a minor injury or surgery. A sprain or broken bone are often the reasons heard when asking, “How did you get CRPS?” Minor surgery is a common reason as well. Surgeries for carpal tunnel, or to remove a neuroma from the foot.

Myth #7: If you don not get pain relief from a sympathetic nerve block you do not have CRPS.

Fact: Getting no pain relief from a block only means the pain is SIP, Sympathetically Independent Pain. Patients who get pain relief from a block have SMP, Sympathetically Maintained Pain. A series of blocks may be successful in putting CRPS into remission. It also may result in longer periods of relief with each block. This myth has caused delayed treatment for many people. — atSurviving CRPS & Chronic Pain, Our Personal Journeys.

it sucks living with CES

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

I still have been in a weird mood. I don’t know why. Seems so weird that last week I was in the depths of a suicidal depression and this week I am the complete opposite. I am not manic or anything because I am eating and sleeping at least 6 hours. I keep waiting for the shoe to drop. I am a little more depressed today than I was yesterday though so maybe I am going back to my normal depressed self.

I editing my book today and I just felt sad about it. People are going to be reading about my condition called Cauda Equina Syndrome (CES) and know about my difficulties going to the bathroom and my issues with taking a shower. I know I shouldn’t really put it out there but my book is compiled of my blogs. SO the words are out there. I have not gotten any criticisms or negativity on my blog. But I don’t know if my book will make the headlines or anything. It will be the first book that I know of dealing with CES and what it is like living with this condition. The thing is people need to be aware of this condition because it can happen to anyone. It doesn’t discriminate. I am no medical professional but trust me you wouldn’t want this condition to happen to you. It sucks living with CES. You have medical professionals that don’t care after you have had surgery about the nerve pain or the nerve damage that leads to possibly another chronic pain condition known as CRPS (Complex Regional Pain Syndrome). You get this condition and you are pretty much in pain for the rest of your life. I have the milder form of the condition so I am not in a 10+ pain every day but there are days when I do nothing and it flares up. Lately I have been ok with pain so maybe that is why my mood has shifted. But while I was walking home tonight, I got within the corner of my block and my foot acted up. It was killing me by the time I got home. It feels ok now that I have it up and I am laying down in bed. Thank god for laptops.

Not only do medical professionals deny that you have damage, but they also forget when you remind them the next appointment. I go through this every month I see my primary care doctor. It is like I am seeing him for the first time for my ankle pain, every single month! I get so frustrated. And now he thinks he found the cure by having a cortisone injection. I don’t want an injection. I don’t believe in them and I believe they can cause more harm than good, especially to joints. Plus, it isn’t an exact science. There is only a 50/50 chance it will work. Why should I go through the pain of having needles stuck in me for a 50/50 chance? No thank you! I don’t like those odds. Just like I didn’t like them for my back problem. Sometimes it works for people, but with my luck, I will be the 50% that it won’t work. And I am NOT going to be the one to say yea I will have it done JUST to have it done. Again, No Thank you! My body, my rules. I am not going to have anyone dictate what should be done with it. Pain medication is working for me so why not stick with that? I know that eventually the pain meds will stop working for me or I will have a dependence on them but as long as my doctor prescribes them, my life is manageable. And isn’t that the important thing?

another shitty night of sleep

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

I had another shitty night of sleep. I was in pain for most of the night and then when I woke up this morning, I was in the same amount of pain. So I took some pain meds, made breakfast, and then went back to sleep. I didn’t wake back up til after 3. I still am tired but not in so much pain. It has quieted down some, though I don’t know for how long.

I just had dinner a little while ago. I swear I could go back to sleep but I know that if I do, the same pattern of sleeping is going to resume and I am not going to get anything done. I still have to put my edits into the word document file. That is going to take some doing. And when I do it, I am shutting off my fricken phone because I don’t want any distractions. Even as I am typing this, some text messages are coming in or alerts for Words with Friends. I don’t need them. Ok I am a little grumpy because I have not had a good sleep and I am tired. If it wasn’t so late, I would probably go to Walgreens, get my half and half, and then make me a cup of coffee. But it’s after 6 now and if I have coffee now, I am going to be up half the night. I should make myself a cup of tea. That will wake me up but not keep me up. I really need to go to the grocery store this week (after Thanksgiving) to get more tea and pick up my coffee for the Keurig. Now that I have edited more than 100 pages, I can get my coffee reward. It might sound strange but it’s the little goals that keep you going when you are working on a project.

Last night I emailed my writing partner and told her I was thinking of going to Amazon for publishing and what did she think of it. I haven’t heard back because we really haven’t talked about how to get my book published other than me writing it. And I will be damned if this thing just sits around while time goes by. More and more people are publishing their stories about suicide. I would like to be among them. I also told her about my worries about the first few months of this being successful and then nothing. I just hope this doesn’t end up making me lose my disability. I will be so upset because it took me so long to reach that point to admit being disabled and go for it. And then I will be flipping out because I don’t know what I will do for income. But on the other hand, if my book is really successful, then I don’t have to worry about it. But I know it’s not so there is that fear as well.

Might write another blog later. I can’t keep up with this one so I will stop here.