Hello everyone, I am new here and learning my way around. I am a 39 year old female living in the South. For years I have been "sick" Two and a half years ago I got to the point where I could no longer work, yet I had NO answers. I pretty much have been labeled as a head case. I am sure some of you can relate to that.
I was sick and tired of being sick and tired and I started contacting anyone and everyone I could relating to my symptoms. I contacted Mayo and Cleveland Clinic. Mayo point blank said that would see my but they do not treat chronic fatigue. I them contacted Cleveland Clinic. They are willing to see me but getting there has been quite the quest. They do not work fast at all to get things done.
I was on facebook and a lady I know on there asked me to please detail my symptoms. She had seen that I just kept going downhill and she wanted to know just what all it was I was experiencing. Come to find out she had two friends who presented the same symptoms and it was called Chiari. I had no clue at all what that was. Two other friends read the post and replies, now this lady had told me the name Chiari in private, and she did not know the ones who started commenting me. I had two more people ask me if the doctors had mentioned this thing called Chiari.
Since this name kept coming up I decided to look into it more. At first I was really sick and it was not clicking what I was reading. That silly brain fog just consumes me at times. That was one of those times. A couple of months went by and I kept being asked if I had read about it and tried to do anything about it. This is when I started sending my MRI's off to Chari doctors. While my head was clear for a bit I really delved more into the subject and reading stories and articles were like reading all about me. So I started to think how this could have happened.
Since I am currently waiting to go to Wisconsin I have no idea if I was born with this or if this is something that happened as a result of a trauma. I am leaning towards the trauma. When I was 10 or so I was trying to exit the tree house. I missed the step and fell about 12-14 and landed on my back hitting my head. I am leaning towards that is where it all started. I thought nothing of the fall at the time and I went in the house and napped a bit and just kept going. I did not tell an adult about the fall because there were too many fun things going on like riding in old cars in the fields and getting to go to the bar with the adults and getting to play the bowling game there! (that was a very different time in life, in the 80's kids could go with their parents to a bar and parents did drink and drive. No one thought anything of it. Now those things would have CPS on your door and kids would be snatched out of the home forever) But yes, I do believe this is when things started.
I have always seen "stars" and "tracers". Then at 12 I started having my monthly visitor. My periods were pure HELL. I always cramped bad. I would get weak, clammy, break out into sweats and pass out. Some people thought I was faking, mom took me to a doc and they put me in the hospital and said I had pelvic inflammatory or PID. I was pumped full of antibiotics for a few days and sent home. My periods were still hell. They started me on birth control to try and make it easier on my. It didn't work, it just made things worse. I ended up having a stillbirth, 3 miscarriages and finally 2 healthy children. My pregnancies were terrible. I stayed dizzy, and had constant headaches without aura. I passed the glucose test but the doctor still wanted to say those spells were low blood sugar. I do not believe it to this day.
As time went on, I kept telling my doctors that I was more tired than anyone I knew. I was pumped full of B12, I was told to choose another profession, and was told a few times I needed a psych eval. I did get a psych eval, with the #3 top rated psych in my state. I figure if they want me to see someone I may as well go as close to the top pro I can go to. He stated I have ADD and PTSD. I can reason with that. He also told in his report that I had no other underlying conditions often associated with PTSD. So there is no Bi-Polar or other psych conditions.
So I take those results back and explain to my docs, look I have this, not what you think! Because the condition was notated on the computer charts all docs see it and it has caused me some problems getting to the right eyes.
Every time I turn around it seems I have yet another problem. So I ended up having to quit working 2 and a half years ago. I have complained with headaches all my life, I was told I have migraines. I have no aura, and they are in the BACK of my head. I get icepick pains in my eyes, I develop lumps behind my ears when things are really bad. Then as time goes I can hear and feel the fluid seeping down my neck. I am told I have constant ear infections. I have taken so many antibiotics and steroids it unreal. I seems I am always on a round. Yet the ENT and regular docs cannot understand the ear aches and so called infections that antibiotics do not heal. I have hearing loss as well as I am sensitive to sounds and light. It is hard to go outside. My eyes do not focus right.
I sleep the pain away. The pain gets so bad that I vomit and as of the past few months I have dropped a LOT of weight. My lower back is killing me. There is a cyst I was told was nothing to worry about and there was no way I felt it even though before the MRI I showed them exactly where it was. Since that lumbar MRI it has gone from 8mm to about the size of a half dollar. Still it is nothing to worry about. You shouldn't be feeling pain.
In the past almost year my joints have been giving me problems. I had imaging done on the left knee. Again nothing to worry about. I got a shot in the joint and was sent to PT. There is a obvious bakers cyst there, but again, it is nothing to worry about and you should be using it, not using that wheel chair. Can you see, I have some terrific doctors right? It is not just the knee. I get these series of 2 weeks of being ok, then 2 weeks of a joint being attacked. It used to always be on the right, everything I felt was on the right. Now it is all over. But for two weeks I am find, then for two weeks a joint will make me want to amputate!
I have to sleep on a wedge. I have to use another type of pillow under my knees with my legs draped over. I have to use a 6 foot long pillow in a U shape under my head with a neck pillow on top of that then the rest of the pillow pulled in close to my sides. My bed looks like a circus. Between my husband having 8 blankets and me having so many pillows no one wants to make that bed up. Who could blame them.
And then there is the night sweats and heat I cannot stand. I have to keep the house at 68 and sometimes 65. I get so hot. All harmone (sp?) are normal, thyroid normal. But I sweat like I am having the change of life. I wake up drenched in my own sweat. And it also happens during the day. I will just break out in sweat.
I stopped monitoring my blood pressure. It is so random it is unbelievable. I was doing a daily journal I ordered from amazon but I have not ben able to do it in some time now because the brain fog just takes over and I am not able to stick with it any longer. But I do have several months documented that can be looked at to see the patterns.
Thanks for letting me tell you my story so far. I know this post is long but as you know, our journeys are long, and painful and full of plenty of conversation.