In September of 2008, I was diagnosed with rheumatoid arthritis. Two months later, a rheumatologist confirmed this and gave me a second diagnosis: fibromyalgia. Those first six months after receiving those diagnoses were the hardest of my life. I was in more pain than I had ever imaged and I was struggling with two conditions I barely understood.
Yesterday, I had my weekly appointment with the chiropractor, and I didn’t get much relief. In fact, I lay in bed last night praying for the pain to just go away. So much for prayer! I awoke to more pain than I was in the night before. I even took a muscle relaxer before bed and it doesn’t appear to have helped much. At the chiropractor yesterday, I realized that my entire back was sore. When I got home, I noticed that my upper arms and thighs were sore as well. In addition to my herniated discs in the neck and back acting up, I am also dealing with a fibromyalgia flare up. Yesterday, I was also dropping things and the knuckles in my hands were in inflamed. My left knee and ankles were inflamed as well. Therefore, I had two flare ups going on. Talk about double whammy.
As I drove into work today, I thought about how long it’s been since I dealt with a double flare up and the truth is, it has been quite some time. Winter can be pretty harsh on my joints and my muscles but the pain I am experiencing feels like it is unfamiliar territory. Perhaps, it has been quite some time since I have had a double flare but let me tell you, it is not pleasant company. Further, it has taken me back to winters before I was diagnosed. The pain, especially the muscle pain, is all too familiar.
I ponder as to whether I am a lot better off now that I have a diagnosis (albeit a double whammy) than I was when I just didn’t know. It occurs to me, however, that this was what the pain was like all those years ago. I have spent the last three years taking medication and making good lifestyle and diet choices in order for the pain to be at a minimum. The pain I have had for the past few days is a result of overexertion. On Sunday, I decided that I was tired of boxes all over the place and finished all my unpacking. From 9 am to 5 pm, that is what I did. I took breaks but nevertheless, I overdid it and this flare up is the end result.
When I go through periods where the pain is at a minimum, I often forget what a bad flare up is like. I overdo things because I feel able and capable when my pain is at a minimum. However, like many of you, I pay for it. Also, when my pain levels are low, I never know which is causing my pain – fibro or RA. But when my pain is high, I can determine which is causing the pain and today, the muscle pain is from the fibro and the joint pain from the RA. I can feel both and it is not very pleasant. The two conditions are symptoms are similar: muscle pain, morning stiffness, loss of mobility and range of motion. Since this, on my worst days, I can tell the difference.
Since the two diseases having some similar symptoms, they are quite different. Fibromyalgia is not associated with inflammation and RA is. I read somewhere that while it is possible to suffer from both RA and Fibro, it is pretty rare. Wow, how about that! Leave it to me to define “rare.”
That’s my double whammy and anyway I look at it, it still sucks. I guess when my pain is relatively low and my fibromyalgia is, for the most part, quiet, I will forget how much it sucks. In fact, I will forget enough to overdo things yet again. In the meantime, please send happy thoughts my way.
And all you people who love Valentine’s Day, this is my Ba Humbug moment. I never understand the purpose of V-day. Seriously, we need one day to tell people we love that we love them – and why can’t we do that without a special day? I always love the cute handmade gifts from my kids – don’t get me wrong but I have a problem with the fact that people, in other words adults, need a special day to show love and appreciation. That is my thought on it. It may just be the flare up and the cold and snow blasts we have been getting here. And if you sun by you, instead of gloating (and you know who you are), PLEASE send it my way.
- What did it take for you to get a fibromyalgia diagnosis? (theadventuresofarthritisnfibromyalgia.wordpress.com)
- Winter Months and Fibromyalgia (theadventuresofarthritisnfibromyalgia.wordpress.com)
- My Relationship with Pain (livinglifewithraandfms.wordpress.com)
- Do I Ever Feel Sorry For Myself? (livinglifewithraandfms.wordpress.com)
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About Lana
Since I started at Blogger, it took me two years to pull together an “about me” section which I have now moved here. When contemplating about writing an “about me” section on my blog that would talk about my diagnoses and the effect that they have had on my life. Every time I start to type, I am not sure what it is that I want to say. I just know that what I have to say has to have a profound effect on those reading the words and having all the same questions that I have had for some many years and even the questions that I still have.
When I was enduring a variety tests and looking for answers, all I wanted was closure and that meant an answer for what was going on inside of me for so many years. At some point, I thought it was normal to feel sick everyday of your life because if it wasn’t normal, then it would mean that I wasn’t normal. After years of misdiagnosis, mistrust towards so many medical providers and frustration at the lack of answers, I started to wonder if what was wrong with me was all in my head. It took time but eventually the answers came.
From the day that I received my first diagnosis, rheumatoid arthritis, I promised myself that RA would not win. A couple months later, I was also diagnosed with fibromyalgia. In beginning, I went through a variety of emotions: Fear, denial, optimism, frustration, numbness, and skepticism. My emotions would change several times day and hope and acceptance were a long ways down the road. In beginning, I thought that I would fight the inevitable but it didn’t take very long for the diseases to win. I became depressed even though I insisted to everyone in my life that I was not depressed and I kept going on because I had to. I leaned on my love and dedication to my children as my coping mechanism. I knew that no matter what I was going through I still had to be their mother.
The years of trying to find answers taught me and gave me patience, dedication, strength and survival. I don’t know who I would be without that experience. So many times in my life before RA and FMS when life handed me lemons and I always threw them back. With RA an FMS, I can’t throw the lemons back because it doesn’t work that way. I just have to keep reminding myself that the lemonade will get sweeter with practice.
Steroids, a lack of energy, and physical pain take a toll on you. I stopped stepping on the scale because I am tired of the weight gain. I stopped visiting friends and family who think that my conditions are simple and that I am just being a drama queen. I stopped trying to be perfect, having an impeccably clean home, and trying to be everything to everyone. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. I am not saying it will ever be easy but it is what makes us exceptional.
I can no longer carry my toddler and sometimes, it takes a lot out of me to make it into work every single day. There are nights where I lie awake staring at the ceiling whispering and repeating the words “I am in so much pain” until the sleep finally consumes me. I didn’t invite RA or FMS in my life. They just showed up one day and never left. I used to be a planner and my diseases ruined any plans that I will ever have. When I was pregnant with my now toddler, I scheduled the induction the day after I started my maternity leave because I wanted to spend as much time with my kids as I could before I went back to work. I refused a C-section when it looked like things weren’t progressing because it would ruin the “plan,” and now, I don’t make plans. I just live for the moment and if there is anything I hate more than the unexpected, it is disappointment and failure so I stopped planning. If I have to live side by side with my conditions, I have to understand that I cannot always win.
Imagine being a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. Of course, I wanted closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me so that I could gain some normalcy back into my life now that I had some closure.
One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too.
My blog is about who I am, my struggle for answers, and how I have made lemonade. I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FMS may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worst than the physical but we all struggle with something and for me, it is RA and FMS.
I am the patient advocate for two Alliance Health online communities, Arthritis Connect and Fibromyalgia Connect. It is something I am very proud of and I ask that you join me so that you can find answers and give support to others who have a multitude of questions.
I have fibromyalgia, chronic fatigue, DVt and a few other issues. What has helped me so much is acupuncture. That and taking some magnesium and I hate to admit this but it seems counter to the pain but exercise.
Feel better
Hi Maureen, Thanks for taking the time to read my post and visting my blog. I will look into the magesium approach. I am active but not as active as I should be so I really need to rethink what I am doing. I am not so open about the accuputure but I have been considering it.
It is so easy to forget about flare-ups and overdo it. Wanting to get things done because you haven’t been able to pushes me into overdoing it far too often. I hope your flare-up settles soon so you can have some relief to your pain.
Thank you Alicia.
As a therapist, I used to give paraffin ‘hand-baths’ for people who experienced arthritis and that seemed to decrease the pain, if only for enough time to help their body quiet down from a flare-up and the person to gain back a sense of control. I’m not sure if this is something you might want to try. Exercise also helps me significantly. If I don’t exercise for a couple of days, the entire body sky-rockets in pain.
The flare-up will flare-down. The amount of pain that can follow an activity can be so unpredictable, and it’s hard to balance life with pain, especially during a move. I hope you find relief soon. You’ve been in my thoughts and prayers every day since I ‘met’ you.
Thank you Debroah. You are so sweet. I will try the things you suggested.
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