Where do I start?
I was dx with fibromyalgia in 2005, when I was 29 yrs old. I was sick for a year and a half before I had a name for it. My symptoms started out as a flu like illness that I couldn't shake. I also had strange "neurological" symptoms at that time. Tremoring throughout my entire body, muscle twitching, vibrations in my head. Of course I was told it was anxiety and no one could ever explain this to me. As the months went on, I developed more symptoms. Muscle & joint pain, nerve pain, dizziness, vertigo, chronic low grade fevers, and the fatigue was always there, that would wax and wane, as well as the malaise and somedays was dibilating. It was all I could do to get through a week of work and days I couldn't, I would sleep 14 hrs without any relief.
With physical therapy, injections for pain and a low dose of Amitriptyline. I slowly pulled out of it reclaiming my life. However, I would go through flares and would have to take a day or 2 and rest, sleep it off. Illness would set me back. But I would say I lived a very normal life despite fibromyalgia. I even worked out 3-4 times a week and got in the best shape I had been since high school. Plus I worked 40+ hrs a week at a very stressful, high paced job.
Fast forward to May 8, 2012. My husband and I had our first child who was 9 months old. I woke up sick, vomiting with what I thought was the stomach flu. This went on for a month, I lost 20 pounds, was vomiting, severe naseau, and had been to the ER for dehydration and was told it was a virus. I was fatigued beyond belief, it was all I could do to take care of our son and shower. My work was nice enough to let me work from home that month. June 2, 2012 I had emergency surgery for the removal of my gallbladder....this was it! I was on the road to recovery.
3 weeks after my surgery, I was starting to feel pretty good again. We took a family vacation from Wisconsin Dells. A few days upon returning, it all came crashing down again. The severe fatigue, and now the pain all thoughout my body was unbelievable, naseau, weakness, malaise,
numbness in my hands, feet and my face, dizziness, brain fog, it was exactly like I was 28 again and severly ill. This started the battery of tests, MS, autoimmune diseases, cancer, Crohn's, Celiacs, everything coming back negative. 4 Drs told me that I was having a severe fibromyalgia flare.
It has now been almost 5 months since I first got sick. My best month was August where I had almost 3 good weeks straight, I was going to return to work, and then the symptoms all cycled back again. I was bedridden for a week. This month has been rough, I am just coming out of an almost 8 day cycle. This one included a low grade fever (which comes and goes since July), swollen lymph nodes and severe chills.
My cycles seem to get worse with my menstrual cycle each month. Also if I overdo it, I pay with a day or 2 of fatigue and symptoms.
I am now seeing a good Dr who believes I could have Lymes or a co-infection. I am having more extensive blood tests done as well as a Western Blot. Lymes has been brought up several times before by previous Drs and that test is always negative. I just had it redone the end of July. My GP encouraged me to seek a 2nd opinion. The Dr I am seeing now as also found out I have severe malabsorption problems, insulin resistance, and poor functioning thryoid as well as damaged ATP's...my cell are not making energy.
I need any advice you might have. Are we on the right path? I am so sick and tired of being sick. I want more than anything to get my health back for my son, and my family. I now face the possibility of losing my job. I love to work :( I don't want to cry anymore, and a lot of our family members do not understand. It's a very lonely, scary path to walk. Without the support of my husband I don't know how I would manage.
Thank you for taking the time to read this, it got pretty long.