Let’s Talk About Fibromyalgia

I have to admit that the past few months have been a rough time for me physically. Yes, I do have Fibromyalgia and have had it for twelve years. On top of that I was first diagnosed with Chronic Fatigue Syndrome almost eighteen years ago. The problems started well before diagnosis. It all started when I was in the seventh grade and somehow contracted mononucleosis. I never fully bounced back after that, but none of the doctors my mother took me to couldn’t figure out what was wrong. Some of them even suggested that it was all in my head. Of course this was very troubling to me, but life went on and I developed ways to go about my business in the best way that I could. At the age of twenty two, I went to a new doctor and after running the whole gamut of testing I was diagnosed with Chronic Fatigue Syndrome.

This was still in the early days of doctor’s even acknowledging that the condition existed. Even today, there are a few in the medical community who scoff but there is much greater acceptance…even though there is still no known cause or cure. Let me tell you what a relief it was to have a name for what had been going on with me for so long. They didn’t really have any way to treat it, but they did send me home with literature to read and just seeing that there were other people out there going through what I was going through was priceless for me. There wasn’t much that could be done for it, but at least I knew what it was and so I continued on with my life…working and going to school.

At the age of twenty six I enrolled in nursing school and while it was a struggle, I loved it. There came a time that the work load was really heavy and there was not much sleep for me. My pain and fatigue levels went through the roof. I was actually sitting in class with a microwaveable heat bag just to get through it. When there wasn’t any relief after a few months, I went to see my doctor. He diagnosed me with Fibromyalgia and prescribed muscle relaxers and non-narcotic pain medication. This helped tremendously for a while and made college a lot more pleasant.

For several years I worked and was really enjoying my career. It was a struggle at times, but it was manageable. One day when I was on my lunch hour, everything changed. On my way to get lunch I was stopped at a red light and was rear ended at around 45-50 miles per hour. The person who hit me said that they had dropped something on the floor and didn’t see that traffic was stopped. Thankfully there were no broken bones but I suffered severe whiplash, soft tissue injuries, and several herniated discs. There was a lot of physical therapy and countless doctors appointments. The first neurologist I saw suggested that I file for disability and this was something I didn’t even want to consider. Because of the length of time I had to take off from work initially, I lost my job but found another soon after. While I kept working for almost three years after the accident I had several jobs because I just wasn’t able to stay working for very long.

I finally went to see the first neurologist that I had seen and broke into tears in his office when I had to admit that I was no longer able to work. It was very hard for me to do that, and it took me a long time to accept that it was real. The accident made the conditions that I already had so much worse that there simply wasn’t a choice. Over time the condition of my spine has also worsened…nerve entrapment, arthritis all throughout the spine, etc. It hasn’t been easy but I’ve been reworking my attitude and my life, finding new things to keep myself occupied. This process took a few years because I was so accustomed to going out to work every day that I just didn’t feel that I was able to do anything worthwhile with my life. I’ve since found out that this isn’t true. It’s just different than it used to be.

Well, over the past few months I’ve been in a terrible flare up and had a new symptom start. When visiting my dad a few weeks ago I stepped outside onto his porch for about five minutes and noticed that my hands felt like they were burning. When I looked at them, I saw that one of my fingers had turned ghostly white and then after going inside there was a bluish tinge on the palm of the same hand and a few fingers. It was weird but I just blew it off. Over the next few weeks at home, I had more problems with extreme cold and pain in my hands and feet. It just wasn’t letting up, so I broke down and made an appointment to see my doctor yesterday. She told me that it is Raynaud’s Disease which often comes along with fibromyalgia and chronic fatigue syndrome. From here on out I have to make sure that I keep myself warm to prevent complications from lack of circulation. She said it was an autoimmune thing. When I let her know how much pain I had been in for a few months we agreed that it was time to try something. So, she prescribed neurontin. Not only is it used for nerve pain, but she said that it has shown some promise in helping with fibromyalgia.

Last night was my first dose and I spent the whole day today like a zombie. She warned me that I would be extra tired for a while, but that it should wear off in time. My hope is that this drug will be tolerable for me and will give me some relief. I’ve tried so many and haven’t been able to tolerate them. With all of this going on, I’m really glad that I’ve started doing the tarot readings a week at a time now! It’s going to take some time to get used to this. The timing stinks to be going through this because I have so much to do…packing for my move, plus I really want to get back to work with my Nano novel by finishing and editing, and there are several knitting projects sitting here waiting for me. Somehow I will get it all done, because I’m not a person to just give up. This is a little slow down but I know that it will be okay.

I really wanted to write this post for the sake of awareness of these diseases and also to encourage others who are going through it…there are a lot of us. Most of the time, we do not look sick and it can be hard for our families, friends, and others to try to understand. A lot of people refuse to, and that’s okay too because the people who really care about us will be supportive and there will be new friends along the way. Thankfully I have a few key people in my life who are very supportive and I hope that they know how very much it means to me. There are days that would be very hard to get through if it weren’t for their love, friendship, and support. Even though I’ve said it to them before…it cannot be said enough…thank you from the bottom of my heart.

 If you are one of the many suffering out there, the best advice I can give you is to be kind to yourself. Yes, I know that it can be hard sometimes because there are a lot of things you will want to do that you could have done before and no longer can. Try not to look at yourself and see failure, because it simply isn’t true. You will find new direction with time. Life is not over, and you are still valuable and worthy of love and compassion. Who knows…maybe the new you will come across something to do with your new way of life which will bring you more joy than you could have ever dreamed of. Just don’t give up…I know that I am not about to.

7 thoughts on “Let’s Talk About Fibromyalgia

  1. Fibromyalgia is a tough condition. I work in a medical facility that treats some people who have been diagnosed with FM, but it's such a tricky illness that some of our doctors don't want to take on patients with that particular diagnosis. I admire your steadfastness in the face of everything you're going through. You know yourself well. I trust that you'll pace yourself and get to where you want to be in good time.

  2. You're right Spark…it is tricky. Seems like every time you turn around there's something different happening. I really appreciate the compliments coming from you…it means a lot to me. Thanks 🙂 The new medication knocked me for a real loop yesterday, but today is better. I even got some packing done for the first time in a few days! I hope that you're doing well. *hugs*

  3. Thank you for your inspiring post. I stumbled onto your blog because I think I may have fibromyalgia or a related disease, and I wanted to do some research on the Internet to learn more. I'm very discouraged right now because I lack health insurance and because I may need to begin a job search in the near future to supplement the income from my home-based business. I'm starting to see that being chronically ill, with or without a diagnosis, will impact my daily activities and career and that it may call for a drastic need for self-reinvention, as some doors may close and other doors may open, career-wise. Thank you for showing me that there is hope during challenging times. Your upbeat attitude and wisdom is greatly appreciated.

  4. Thank you for reading it and leaving such a great comment. I am sorry that you are having a rough time with your health right now and wish you luck in getting answers and the help that you might need.

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