Nicole Caudill’s diagnosis of fibromyalgia devastated her life – but a pain clinic and the support of family and friends have helped her turn it back around

I am 38 years old and have lived with fibromyalgia for six years. I have suffered from depression and anxiety the majority of my life which have been controlled through medication. But while at work in 2008 I started noticing sharp pains shooting down the back of my skull and all the way down my back. I had a very stressful job and just thought this pain was due to stress. I saw my psychiatrist who prescribed more pills in the hope of easing the stress and pain.

The year 2008 was the hardest of my life. As well as going through a lot of personal issues I had a stressful career as a social worker. I now know the amount of stress I was under caused trauma to my central nervous system, which resulted in fibromyalgia. My body was giving me so many signs that I needed to take care of myself but unfortunately, this disease is the aftermath of not listening to my body.

I saw three rheumatologists as well as my family doctor but none of them were able to ease my pain and fatigue. They didn’t want to try pain medication because they said they wanted to treat my symptoms, not mask them. I’ve tried every anti-inflammatory you can think of as well as all the medications for fibro and steroids including biologics and methotrexate. I was missing so much work from pain and not having the energy to get through each day and the fatigue was so bad I was falling asleep at my desk at work. At 5pm I was rushing home so I could lie down and usually wouldn’t wake up until I heard my alarm clock going off the next morning. I was so scared because I knew I was going to lose my job as I wasn’t getting any better.

I applied for the Family and Medical Leave Act (FMLA) and worked hard with my doctors to try to find some kind of medication combination to help me with the pain and fatigue. I knew I was going to lose my insurance which was causing me more stress (I know now that stress exacerbates the pain). Nobody understood what I was going through because I didn’t look sick. I was told by everyone that I just needed to push through the pain but they didn’t realize that I was already doing that.

Rock bottom

Unfortunately the inevitable happened. I was almost out of FMLA hours and as terrified as I was I resigned on December 31st 2010. I took out my retirement money, hoped for the best and promised myself that from then on I would be putting my health first.

For the first five months after leaving my job all I did was sleep. Fibromyalgia took everything that I felt mattered to me away. I lost my career that I worked so hard for in college, I couldn’t mow the grass anymore or maintain my house. I can’t believe what I took for granted when I was healthy because now I struggle with tasks such as taking a shower, doing housework, grocery shopping and even things as simple as getting out of bed.

I couldn’t believe I had this disease with no cure and that no doctor would give me any kind of relief, or just believe my pain was as bad as I was claiming. I felt isolated, angry and alone with this horrible disease. The only way I could describe how I was feeling to doctors, friends and family was as though I had the flu and had then been run over by a truck.

Then I started struggling to fall asleep. I went from sleeping 24/7 to not being able to sleep at all with the longest period of time I was awake being six days. I was hallucinating, in severe pain, I felt alone and terrified.

I tried online dating but it was horrible. When I told potential dates that I had recently quit my job due to health reasons the stigma they attached to being as sick as I was at a young age was incredibly hurtful.

Making changes

I couldn’t handle so many negative things happening to me at once so I decided to leave my home and move closer to my family. I got a lawyer and applied for disability in January 2012. I was fortunate to receive long-term disability through my former employer so I moved into a much smaller place which was easier for me to maintain. Moving back to my hometown enabled me to be around my true friends who I’ve known since childhood and so I could surround myself with positivity. My mom encouraged me to try a local doctor but by this point in time I had completely given up on the medical field. I had experienced four doctors fail me and watch me lose my job, my insurance and my dignity.

The new doctor was very nice and was the first person I met thus far that could identify with what I was going through because he had fibromyalgia himself. He put me on some patches and referred me to a pain clinic. I was in shock as pain medication had always been my last resort. For the first time in two years I was able to get out of bed thanks to the patches.

But when I started going to pain management my quality of life changed significantly. I was able to do things and go to places that I couldn’t before. I started to embrace fibromyalgia instead of fighting it and in doing so I became a much happier person because I wasn’t suffering the same magnitude of pain any more.

I know that not every fibro sufferer will have the same results as I did with pain management but I also know that many fibro sufferers are not given the opportunity to try this method because of the controversy that goes with pain pills and clinics.

After being denied social security twice I went to court and had my disability hearing in August 2013. Fortunately I was approved for social security a month later for which I am so grateful. It wasn’t an easy process and I had to wait a year and a half for my day in court. It also took a lot of time, effort, worry and paperwork and I never imagined having to go through this and fight for being sick.

A bright future

I tried online dating again and have met the most compassionate man. He didn’t judge me for not working and being sick, he saw me for who I was and not what I have. I have become so humble in life now and I don’t take things for granted anymore. I am truly happy and I have fibromyalgia to thank for that. I still have more bad days than good and I will always have pain and fatigue but I can accept that because now I live a stress free life.

I think there needs to be better education about pain medication and clinics because I was discriminated by four doctors as a pill seeker and treated like I was an addict because I said I was in pain. Pain management is available for a reason. Nobody should have to suffer and be bed bound for two years like I was because of the stigma that comes with certain drugs. I think that so many people are misinformed about pain medication and are worried about becoming addicted so I would love to raise awareness on pain clinics and medication.

I have met many other chronic pain sufferers through social media and am now starting a local chronic illness support group in my area; I just hope that someone will be able to relate to my story and let it help them.

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Image credit: Ray Ashley