…I don’t usually write about how I am feeling or how I am doing healthwise here in this blog of mine. I try to be informative and as upbeat as I can. I’ve kept as much as possible to some “horror stories” of my history of abuse by those who are and were supposed to love me. I have a few DIY craft ideas, then a bit more information and a few more stories.
Today, someone asked me “how do you know that the RSD/CRPS has gone to your heart/chest etc? Well this is what I’ve been told by my “team”….of Doctors. I already suffered a heart attack in 2005 (I didn’t have RSD until 2007-but suffered a MVA & many many bad bad injuries/surgeries starting 2002)..long story short…after that I ended up getting “Atrial fibrillation” and put on blood thinners forever, called Coumadin. lab tests weekly, or bi weekly or monthly /depending. Then I started having horrible pain and was put on the Nitro patch and told I was also having “Coronary Spasms” and I had the under the tongue Nitro as well. I’m told to wear the nitro patch daily and off at night…I take a nitro during a worse”attack”, wait 5 min, take another, wait 5 mins and take a 3rd and if it wasnt better to go to the ER….OK…so that was all before RSD….I had a pacemaker placed in 2003 for “SSS” or “SICK Sinus Syndrome/ a brady-tachy arrythmia ” I was diagnosed formally in 2003 with DYSAUTONOMIA/POTS/NCS… I fainted often..my HR went down so low until the pacemaker was set at 60bpm so it couldn’t go to 23 anymore…and Ihad Altenol for the high tachy arrythmia’s. Things settled down. I had gotten RSD/CRPS Type II from surgery in right foot in 2007. By 2010 it had spread to “full body” in my eyes, mouth, neck , upper back, lower back, arms, hands, legs, feet and it just seemed like everywhere. I had to get a new pacemaker this past February 2013. The Neuro-Cardiologist/surgeon had to call a plastic surgeon to come as well, due to the fact that my pacemaker had worn right through my Pectoral muscle!! She had to rebuild my Pectoral muscle ! She had researched RSD/CRPS when she had heard that “the patient (me) had it)! I was so happy when I heard that! She’d researched and found that “IF” they do a wash internally of the surgical area, with “Bipvucaine” (a numbing medication) they can sometimes “head off” the RSD/CRPS from going internally through the surgery site. I had hoped this would be me and my situation. I was so hopeful. OH….and then during my surgery, the Dr came out to speak to my husband, and told him that my “heart had practically “STOPPED” after he unplugged my first pacemaker! It was so slow that I am totally dependent now on this pacemaker!! I use it 87% at last check, and this was just last week! Anyways, I got thru to my first check up after surgery and I looked and felt horrible. My scar looks horrible. They promised me a much “prettier scar” this time! It’s hideous! It looks like a purple caterpillar!! He’s only seen that in 2 people so far…me ….and one other! So…I’ve not gotten well still. I’m always tired and also feel nauseated just slightly all the time. I feel just plain malaise and generally ill and fatigued like never before. My scar burns all the time…itches but cannot scratch it….my heart is too fast all the time…Before it was stuck or set at 60 bpm so it wouldn’t go lower than that and now it is always up around 90, 100 and even 135 the other day. I sweat from it, the area all the time or often, I should say. I feel “HOT INSIDE OUT” all the time just about. I just cant get feeling back to even my old “normal ” pain levels etc. I cannot go far from home. I don’t do what I even did prior to this last surgery. I had stress IV induced exercise test and echo and next, a sleep study to come. They said those tests were “my normal” or same as 2 years ago. They’ve agreed with me that the RSD/CRPSII is inside of my body now and inside of the surgical area/scar and inside of my heart muscle. With Dysautonomia and RSD/CRPSII ..well our heart muscles are made with the majority of sympathetic nerves and RSD/CRPS attacks the sympathetic nerves ..showing how it can affect our hearts if given half a chance.
There are several places on the web to get information about RSD/CRPS. One of my favorite spots that contains a lot of information and is written by a good family and truly good people is at WWW.RSDHOPE.ORG. I also have a PDF file with the name “Systemic Complications of RSD/CRPS”….I honestly cannot remember where I found that research but I’m sure the file will have that information as well. You really have to be your own good advocate. You cannot give up and you keep going and talking no matter how badly some of the people or medical personnel can make us feel at times. Do not give up on your own internal feelings and instinct. More often than not, it is…or I should say …YOU are correct!…If you GOOGLE that title, you may be able to pull up that article or something similar. If you contact me, I can send you that article. I hope if anyone has these symptoms, they will be helped by what I’ve been going through and they will be more informed than I had been at first!