I don't know how many people have experienced what I have the past few months. Since my diagnosis 4 years ago I have had "regular"/"typical" flare ups but nothing that I haven't been able to get through. I stopped my medications about
10 months ago in hopes of being able to live medication free and be able to deal with my fibro in other ways. I also had just gotten married and my husband and I knew we wanted to start a family about
1 year into our marriage.
In June, a few months after being medication free I went back to my Dr. willing to try a muscle relaxer. Some of my symptoms had gotten pretty horrible (muscle spasms, weakness and dropping things occasionally, headaches, etc.) that I wanted to see if I could do a muscle relaxer as needed. Well I got the prescription for the muscle relaxer but I also got an order for a brain MRI. My Dr. was sure it was just the fibromyalgia, but had to be 100& sure that everything checked out on the brain. I got really upset. Only 4 years before I had gone through the battery of tests and everything was normal and it never occured to me that my life would consist of retesting as new symptoms emerged or old ones worsened. I was having a very hard time coping with the idea that maybe it wasn't just the fibromyalgia - I had just gotten used to the idea that I had fibro. I had the brain scan and everything was fine - it was just the fibro. The muscle relaxer didn't have time to work before I started having horribly sharp stomach pains and was told that it was a drug intolerance. So much for that idea. I decided to enroll in a pain management clinic to learn ways of living better medication free.
A few weeks before I was to begin pain management I had an anaphalactic reaction to an antibiotic. Not only was it hard enough trying to get through that but my body was exhausted, wiped out and began causing it's own problems. I was able to get by for about 2 months. I had many horrible days, terrible flare ups and debilitating exhaustion but I think was doing the best under the circumstances. My Dr. had to keep reminding me that my body had been through the ringer and I was inevitably going to have a flare up and my body just had recalibrate and get back to normal. However, things continued to DECLINE... I was in as bad of shape as I was while looking for a diagnosis 4 years ago: terrible exhaustion, anxiety, depression, loss of appetite, terrible new pains, no energy, cardiac symptoms, etc. My body was acting like it was giving up. I was being put through all of the tests again! Basic blood work, vitamin levels, tested for mono, xrays, checking for blood clots, ekgs, echo, 24 hour holter, autoimmune panel. Mostly everything was coming back normal. Thankfully a few weeks ago things began to turn around and I started getting more energy, was able to be a little more positive and things seemed like they were finally turning around. Just in time too, my husband and I celebrated our 1 year anniversary on Sunday! I was so glad that I was well enough and felt well enough to celebrate. After all, being diagnosed at 24 I never expected to find someone so loving, caring and supportive.
Yesterday I got some more blood work results and it's all normal, the autoimmue panel was normal and some vitamins that had been crazy off were normal. Today I met with a cardiologist and besides some premature heart beats that I can feel (ha! the palpitations aren't just anxiety and in my head! A big screw you to the cardiologist 4 years ago that wanted to diagnose me with just panic disorder) the structure of my heart is great and I don't need to do anything for a year. There was some concern about my low heart rate and the Dr. said unless I pass out it's not too low. It can get up high where it needs to be so it's fine. In a year I'll have another 24 holter and follow up with the cardiologist again.
Basically, I am just so thankful that everything has come up fine so far. I still have the colonoscopy next week and am fairly confident it will just be an "official" IBS diagnosis. Hopefully soon after the colonoscopy my health will be good enough and my Dr. will allow us to move ahead and try to begin our family. It was so crushing to me a month ago to hear my Dr. tell me that we have to postpone our plans of starting a family. She reitterated the importance of me being at my best. I agreed with her since I didn't feel healthy enough anyway, but hearing that it was my health/fibromyalgia preventing us was hard.
I just found over these last few months it was so easy to get lost and the spiraling of one thing after another just did not stop. I have found that I very easily allow the fibro to take charge and in doing so it essentially wins. I feel that I am constantly at odds with my body and I know I have to work towards being at peace and in harmony with it. Rather than feeling like it's constantly betraying me we have to work together to get better. I know I sound like a nutcase when I talk about my body being separate from me, but we've been frenemies for the past 4 years and now I just have to work on acknowledging that my body is me. I am very hopeful that I will continue to feel better with each day and that soon I will be back to 100% (well at least a fibromite's version of 100%). I think that with Thanksgiving only a few weeks away I am especially aware of how much I have to be thankful for.
I am very thankful that I found this forum, it has allowed me to ask questions, share experiences with others and open up more about what I've been going through with people who definitely understand. Thank you for allowing me to share with you. I feel like all the people on here can appreciate everything that I have experienced and understand being thankful for our health.