Hi all . I am fairly new here and have never asked any questions. My story is kinda long so I hope you don;t get bored. I will try for the short version. I noticed about 5 or 6 years ago some weird things were happening. First I do have PTSD but I had an anaphalytic reaction about 6 years ago w tissue edema. I nearly died. I have never felt right since that. I do not ever run a fever and I worked in Pediatrics and caught stuff all the time, body just never registers temp...I will sweat like I have one but doesn;t show. I then started having heart palps,and these weird occurences where my body would feel like it was rushing w adrenaline and I would flush for no reason. I also noticed that heat is intolerable, like i mean it makes me sick if I am too hot, like my body is usually 10-15 degrees hotter than everyone else. I have severe neck pain, anxiety and generalized pain over most of my body ( that just started about a year ago. ,In Nov 2013 saw my PCP and he saw my eyes jerklng after several visits re dizziness, balance, vision , and memory problems. He ordered am MRI of brain and it showed a Chiari Malformation of 8-9 mm on r tonsil. Several specialists later I was told they didn't think it was causing my symptoms. Well I knew I had too many areas of pain and tripping and falling, blurred vision, probs focusing, forgetfulness, unable to remember things at work, sensitivity to light and sound, nausea , dizziness, and heightened anxiety bc i cant control what my body was doing. Something felt haywire and so I went to a pain specialist in Feb 2014 that diagnosed me w Fibro, nerved damage, poss dysautonomia, bc when i stand it feels like I am going to pass out, not always, but a good bit. I am irritable and tired of explaining, I had been out of work since Nov 2013 and have recently filed my dis papers. I have lost everything, my job, home, confidence, ability and desire to interact with others and it SUX. I just needed to vent and what makes it worse is it is hard to drive because of focus and dizziness...uggghh does anyone have all this too? Thanks Jenn
Oh my, yes. My body temp runs lower than normal though. I too have PTSD, Problems with my eyes focusing, with blurred vision, dizziness, bad memory problems and cant stay focused. I have this weird tingly sensation that is similar to the feeling I get in my legs at night, but is also in my whole body. Ive had 3 surgeries in my lifetime, two concusions where I was knock out for a few moments. Am sensitive to light, noise and my anxiety level is off the chart. I sometimes snap and act so crazy and cant stop myself. My poor husband is learning to deal with that one. I haven't been able to work since beginning of year I think. My memory fails me, but I do know it was before my father passed this past November. I have stopped driving too. You are not alone and venting does help. I figure even if no one responds just typing out your vent helps. Although someone always responds here. You are among friends who understand.
Sorry you didn't rest well. Take care of yourself today.
.Wow. That is a lot to have going on all at once! I am so sorry that you are having to deal with all this. I just wanted to say that I have also been diagnosed with the Chiari Malformation. It can absolutely cause many of those symptoms - I can't believe your docs didn't think so. I still have to be careful about tipping my head back too far - like looking up in a cupboard in the kitchen - or I get extremely dizzy! I have to remember to hold onto something or I will fall over! Mine was not so severe that they had to perform surgery, but it is definitely there.
One other thing was that I saw an Ear, Nose & Throat doc who has treated me over the years for sinus issues. He did some extensive testing and discovered that most of my imbalance was due to 47% loss of nerve function in my left ear. That had been caused by a severe sinus infection that hadn't been treated aggressively enough or long enough. It was such a relief to have someone tell me that there was an actual reason for what I was experiencing. I can imagine how frustrated you are becoming. You are right, driving can be a real challenge.
Best of luck on finding some relief and a doc who doesn't just want to give up, but really help you!
Hello Jenn
I dont drive anymore because of getting lost in ares i have been in for years. I think venting is very good for us. It helps to know we are not the only ones going thru this.