Now that I have your attention. This is probably my biggest pet peeve. I know they mean well. I do I really do. For some people this cure , this idea, will work. Fibromyalgia is a process of elimination diagnosis. Having put myself through the exhaustive process of elimination I understand the desire to just jump to a diagnosis. I also understand that feeling that the diagnosis they are looking at is wrong but not really being able to communicate that its wrong. There is no words that really describes it.
I think this is why people with chronic illnesses know so much about so many different medical issues. We have looked at them, studied them, tried to fit the puzzle piece of our symptoms with the puzzle piece of the Diagnosis.
When my doctor first suggested it may be Fibromyalgia….I was like nope not accepting that. I literally told her I believed it to be a waste basket diagnosis. Now I really loved that doctor and had been with her for over five years at that point. I was frustrated that I felt I wasn’t communicating effectively with her. Even though she had taken like eighteen vials of blood by this time,she listened. She referred me to a rheumatologist and a gastroenterologist and said we would check with an endocrinologist last. I kept a food journal along with what symptoms came after eating such as gas, cramps,and heartburn for six weeks. The gastroenterologist took at least eight vials of blood. She was also fighting with my insurance company to prove that a colonoscopy was medically needed and was not routine. We did not win that fight but we did get around some of it by checking stools. We arrived at Irritable bowel syndrome aggravated by a corn intolerance. Can I just say here do you know how many foods have corn in them? Practically everything. So prescribed Bentyl, an antispasmatic, and to take two benedryls at night. I will say it was not until the last three years I have gotten serious about reading labels and trying to exclude as much corn products as possible.
On to the Rheumatologist I went. I have to say my rheumatologist was beyond wonderful. He truely listened and he also said he suspected a bit more than Fibromyalgia. More bloodwork, more waiting. We found my vitamin D level was super low. Started prescription strength for that. Levels were very slow to increase but they did start increasing. Finally a year later they were within normal levels…..unfortunately three months off the script and they were back where we started. This was with me taking over the RDA amount daily. I was taking 1,000 iu’s a day. So we then started exploring some of my back issues and how much it bothered me. He said the muscle issues were deffinetely Fibro. For which he prescribed Soma. The bone pain I felt though puzzled him. He ordered a full spine MRI. My back only tolerates being laid on for about a minute maybe two minutes at a time most days. Fourty five minutes was killer. I did not have to wait long for a call to come back in. He said let me start out by saying I am so sorry. We should have done this when you first came in. I had issues at every section of my back. Thoracic issues in your twenties not related to an injury are rare. Guess who is rare? I had been in car accidents but had xrays that showed no damage. Let alone Hypertrophy. Four hernatied discs, some bulging discs a loss of the curve of my neck and on and on. I got Lortab after that.
I can’t tell you how many people heard arthritis, oh do this its what helped me. I was barely 26. Or how many people heard arthritis and basically told me to quit complaining. It was just part of getting older. Excuse me since when was 26 considered old? Or getting old? I didn’t consider myself old. I didn’t consider some of my coworkers who were in their fourties or fifties to be old! How could they just brush it off? I was angry. I was angry at everyone who didn’t show the least bit of concern or sympathy. I was even more angry with people who said they coped with more pain daily than I. Excuse me I delivered an almost nine pound baby naturally with no epidural. I understand pain. I understand high pain. My pain levels that I can deal with are much higher than what most people have. Why do I say that? I totally told my midwife that her massaging my stomach after the baby was born hurt more than giving birth. She looked at me and was laughing til she saw my face. She was like oh you are serious. Okay.
At each step someone had a cure. Someone had an idea I had to try! It drove me nuts! I treated everything homeopathically for almost eighteen months before getting on scripts. It horrifys me sometimes how many pills I take. I am always searching but I also know my body and I know what works.
When I was on almost all scripts I was able to work full time, commute 45 minutes, play with the kid and also do housework. Slowly they started being less and less effective. I had a great support network and I went off all meds. It lasted two months before I was like I can’t function like this.
I am not back on everything I was and now there is a happy mix of homeopathic stuff mixed in. I couldn’t handle working full time but what I am doing is satisfying to me.
So whats the cure? Listen to your body! Do what feels right for you. Don’t be afraid to change things up to see if something works better. Most importantly…..let those comments of have you tried this? Roll right off you! I find an answer of Interesting I will have to speak with my doctor about that works pretty well.
At the end of the day, you have to be comfortable with what you are doing, Not them.