@Brian V - As usually happens - a post like yours about improvement prompts many questions.
I notice that this is your first time posting on PR.
How did you find PR?
When did you join?
What were your worst symptoms before you started the Synergy Trial?
Can you provide details of the differences that you notice now?
How long had you been sick before you started the trial?
Who diagnosed you (and according to what criteria)?
You mention bad and dark days - are you referring to post-exertional malaise?
Many of us get flattened by trying to push through symptoms. So please excuse my skepticism about being able to work through symptoms with will power and positive thinking as that is something that hasn't worked for many people on PR.
I hope you will share information with us - we all want our lives back and we appreciate hearing how others have been able to achieve improvement.
Denise,
I found PR last night by accident. I just finished a good book, The Boys in the Boat, it was well written with a similar style to that of Laura Hillenbrand's. I spent a few minutes looking to see if she was working on a new project and I came across some articles and links. I started to look around to see if there was any buzz regarding the Synergy Trials and it led me to this environment. It's nice to know that I am not alone with these crazy symptoms and a lonely battle.
My symptoms are very similar to many others that I have read. I came down with a major flu in 1990. I remember being totally wiped out for at least 10 days. I recovered enough to function but I had a bronchial infection that I couldn't overcome for quite a while. Shortly after that I developed a very frightening food allergy where I had these incredible headaches from eating normal food. I was eating canned tuna and salmon and a few other things that didn't trigger the headaches. I starting my rotation of doctors and tests that hasn't stopped yet.
I would say that for at least five years my main issue was headaches, depression and mild fatigue. The first significant diagnosis was around 1992. I was prescribed Prozac, B-12 and gammagobulins. The latter two required that I had to inject each into my thigh muscles. I don't know if that program helped at all, I was pretty sick and things were pretty dark. The doctors and tests continued.
Somehow I had stabilized and had a decent lifestyle for about 10 years. It seems that my symptoms changed to be overly sensitive to environmental events. That of course required years of allergy testing, weekly shots, insurance issues, etc. Up to this time I had serious bouts with brain fog. When it came on
The last 10 years have been a very challenging. Just like everyone I had all of the ingredients of a perfect storm. I had a stressful job in construction management, a challenging relationship and a compromised immune system. That is when vertigo, fibromyalgia and leg cramps started wreaking havoc. My sleep pattern started disintegrating during this time as well.
Throw in the recession and being out of work for approximately two years and I found myself in what felt like very serious trouble. I felt like I was walking dead with uncontrollable blood pressure. I was still going through the rotation of doctors and tests, and of course a multitude of meds.
Almost three years ago I was desperately searching the internet for hope and help. I came across K-Pax and the associated article about Dr. Kaiser and his history and mission. He was just starting to put together his original Synergy Trial and he was looking for candidates. I was contacted by Dr. Kaiser via phone, and we conducted a qualifying interview and made arrangements for an office visit. We met, discussed his program and proceeded to establish a baseline of my physical well being for the testing.
Within a couple of months I was pleasantly surprised to be able to navigate through my brain and process information without the stifling fog that is acutely prevalent with CFS patients. It has not been a miraculous breakthrough where I feel cured by an stretch of my imagination. I would say that the good days were about equal to the bad days in quantity, which was a significant improvement. I feel that since I started the program my body chemistry felt much better, my digestive system is much better, and I realized that I haven't had any fibromyalgia symptoms for quite a while.
I have improved and plateaued a couple of times. I have felt pretty good and I start doing projects that I have been wanting to accomplish and I over exert myself and find myself heading for a crash. During the time that I have been on this program I have eliminated all of the different meds that I had been prescribed over the years with exception to blood pressure meds. I think I misrepresented the power of positive thinking in my first post. I feel lucky to have had the opportunity to break through the fog and be able to think and process emotions and information for the first time in many years. That has created some momentum from within that has made me feel more positive about the future. I still have a multitude of symptoms that would bring a normal healthy person to their knees such as the three week insomnia binge that I am just coming down from. The lack of sleep starts impacting and impounding the state of mind, but knowing that I can get to my brain and process information logically has given me hope and the will power to try to get to where I can enjoy my life again.
To answer your last question I refer to dark days as feeling despair and hopelessness, but post-exertional malaise is probably from the same family.
I have not told very many people about my condition or the history, so this feels unusual to post it on a forum, but if the information is helpful to any others with a similar condition then I will be pleased.
That wasn't a quick answer, let me know if there is anything else I can share regarding this journey to date.
