Tired and Stressed out

I've been having a rough day. I've been trying to ignore the pain but it's hard. My shower today set things off pretty bad. It felt like I was being stung by a million bees the entire time. I was freaking out! My headaches are unbearable and they have been this way all week. I have trouble remembering if I took my medicine so I'm getting frustrated. I have to set an alarm now for reminders. My memory is not what it used to be and I've been noticing that I am even reversing my words when I speak and also writing numbers and letters backwards. I also write things completely wrong at times. I get very upset with myself when this happens. The RSD involves the brain. My brain doesn't process anything correctly. My brain first of all processes everything as PAIN. The pain takes over and then nothing else works right. My memory, concentration and ability to focus on things have been greatly affected. I can't sit in one place for very long and driving is getting more difficult. I don't do well with anything that takes concentration, focusing, thinking, etc. I also am having a hard time with lights and the sun. It bothers me so bad. If you've ever had your eyes dialated at the eye doctor and walked out of a sunny day without sunglasses...well..you would know how I feel. That is how I feel every day when I walk outside. I tend to not turn on lights in the house as well because it bothers me, especially the bathroom lights. My eyes don't work right either and I have trouble focussing. It seems that my optic nerves are being affected now and if damage is done, it is not reversible. I have 3 pairs of glasses and I change them throughout the day. My vision changes by the hour. It's the craziest thing. I try to make light of it but it's not easy. I hate not being able to read anything and asking everyone for help. It's tough. I have had to learn to ask for help now for lots of things. I give my kids so much credit also..they have been WONDERFUL! They have been very understanding and helpful. They are usually around to lend a hand and they even yell at me if I don't ask for help. My husband is the same way..so helpful and supportive. I try not to complain about how I feel and how much pain I'm in. I can't hide it though and they know it. They are there for me and I don't know what I'd do without them. I've had a stressful day today and I'm now tired and going to call it a night. This is my time to go lay on the floor and meditate some and just try to think of absolutely nothing! Then I'm going to watch "So You Think You Can Dance" and pop some popcorn. I'm too tired to think at this point and I'm kind of bummed because it was a beautiful day outside for the first time in a while and I spent it in the house. I miss riding my bike and other outdoor activities..it's so hard to cope sometimes knowing I can't do these things anymore.

About Me

I thought I'd sit down and post a little bit of information about me and what I've been going through. A few years ago, I was a very active person who loved mountain biking and other activities outdoors. I started a new job with a company near home. My job consisted of mainly data entry type work. It was very repetitive work. I was in charge of entering all the UPC codes and pricing for the entire inventory. I had a terrible work station. No ergonomics at all! I had a broken chair with no arm rests, a mouse that was too short, a keyboard with no support and just a terrible setup. Over time things started to happen and I was in pain. When I started noticing the cold hand and the pain, I asked for support and even went and purchased ergonomic items but it was too late. The damage had already been done. It's basically like having carpal tunnel but in the neck. I started having pain that went from my wrist to my neck. It was so uncomfortable to sit. I was losing function in my right arm as well. I was diagnosed with Thoracic Outlet Syndrome. After the diagnosis, I went through so many courses of treatment and nothing was working. My condition kept getting worse. The pain kept getting worse and unbearable at times. It's really a very long story so I will try and make this short. Since none of the treatments worked, I had surgery in January 2008. 2 scalene muscles removed. The recovery was AWFUL! I wouldn't with this on anyone! I had such a tough time. From there, the problems continued. 5 months later I was back in the hospital having thoracic spine surgery. I had spinal cord compression in my thoracic spine and could barely walk. That surgery was a huge success and I was immediately better on that part..but the TOS was still so painful and still an issue. Things just continued to get worse and again I have tried different treatments, different medications, PT twice a week for over a year..and I knew something was terribly wrong. The pain was getting worse and it was a different pain. A burning pain! It was spreading! I had eye and vision problems, hair falling out, hair changes on my body, nail changes, mood changes, skin changes, eating issues and more. I couldn't stand being in my body! I still can't! I went to several Doctor's seeking help, trying to find what is wrong. Nobody was coming up with any real answers. I ended up going to the ER in June and was admitted for 3 days. While there, I had a GREAT team of Doctor's who actually listened and really looked at me. They knew something was wrong and wanted to find out what. I finally got an answer but it was not really the answer I wanted. I was told "you have CRPS/RSD", which is from the TOS. I really didn't know what it was at that time. I was discharged with an appt to go and see the neurologist a week later. In the meantime, my husband and I researched it. It hit me pretty hard. After reading about it, it sure explained everything that has been going on. I was so upset. I cried..alot. It has been hard to absorb. My RSD is pretty bad. It's not in the early stages. It's more advanced and not much will help. It seems it's progressing pretty fast. My vision keeps changing and the burning pain has spread to other limbs and at this point it has become full body. I met back with the Doctor's who suggested ketmaine treatments. I was stumped. We again went home and researched that treatment. It was even more to understand and absorb. I have agreed to try the treatment and I am in the process of tests for clearance. The treatments will begin in the fall. That's all for now...will update more later. I'm having lots of pain in my hand today.