Living with Fibromyalgia is Hard!

My Story

As I sit here and type to you I am in pain. To be honest with you, I am pretty much always in at least mild pain. As hard as I have worked and as healthy as I have gotten, I have yet to really know a day without fibromyalgia. If the pain is low and the fatigue is low then it is a good day and it is as close to ‘normal’ as I have been in many years. On those days when the pain is high or the fatigue is high I know it’s going to be a long day. But on those days when both the pain and fatigue are high I just want to crawl into a cocoon and rest until it’s gone. A suspended state of warm love wrapped around my body until it passes.

Two years ago I was in a constant state of high pain and high fatigue. I had been in a flare for 3 years at that point and I was so fed up with it. When I got the diagnosis of fibromyalgia after years of investigating and visiting doctor after doctor I felt two things. A sense of relief that ‘now I know’ and a sense of loss realizing that my life would never be the same. That there would never be that magic pill to just make everything ok and get me back to the person that I used to be.

That sense of loss made me give up hope. It made me give in to the medications, medicated salves and patches and just face the fact that I will always feel like this, and for those of you with fibro you know what ‘feel like this’ really means. I ate a lot of fast food. I watched a lot of tv. I got a recliner so that I could lay and watch tv but be properly supported so that my muscles didn’t strain too much.

I was so sick at one point that I wasn’t sleeping through the night, ever, because I was in too much pain. I could only turn my head a few inches in either direction which made driving difficult. I had severe memory issues and was diagnosed with adult adhd which the dr said was a byproduct of the medication and pain that my brain was dealing with. I couldn’t stand up from a sitting position and not almost black out because of the change in position. (One dr likened it to postural tachycardia – it obviously wasn’t there is nothing wrong with my heart. It was just a side effect of my meds.) My hair started falling out and it was becoming noticeable enough that my dermatologist asked me about it at a regular visit to her and prescribed a medicated shampoo. Basically, I was doing nothing but resting so that I had enough energy to go to work and visit my doctors. Just breathing was exhausting.

When I was diagnosed I also had to mourn the loss of myself. I was always the fun friend. The one that organized the get togethers and activities. A few of my friends even called me Julie, a reference to Julie the Cruise Director on the Love Boat tv show (yes, I am showing my age with that reference!). I slowly started going out less and less to the point where I can say now that most of my friends I haven’t seen or spoken to in years. I see them on social media and we exchange chats but nothing substantial. I had to mourn the loss of the career that I was aspiring to. I was too tired and too ‘foggy’ to even care anymore about climbing the corporate ladder. I was lucky to have the energy to wake up, shower, drive to the office, work and get home. Exhausting!

I also had to mourn my relationship. We were an active couple. We did things that a normal couple would do. Once I was in the grip of the fibromyalgia that all ended. Fortunately I have an amazingly supportive partner who has endured the past 4.5 years of me with fibro because he is holding onto the hope, as am I that someday I will be that vibrant alive person that he fell in love with during the first year of our relationship. The last thing that fibromyalgia robbed me of is my dream of being a mother. This one is tough for me to admit but I started getting sick in my late 30s and now at 42 I still can’t imagine ever having the energy to not only be pregnant but keep up with a child. Everyone that is a true friend and close to me keeps telling me what an amazing mother I would be and that I should have a kid but again, I’m exhausted at the thought.

I’d say that the mourning period lasted for a long time. I just got sicker and sicker and felt like I was spiraling down a long dark hole. I remember one day I was working as a trainer at a large hosting company at the time and I had to watch and critique a training class. The entire time I was trying to give watch the training and think of constructive things to review I was so distracted by the anvil that fell on my head that I had to go home and crawl into my recliner as soon as I was done. I felt like a 90 year old woman in my 38/39 year old body.

So, what was my turning point? How did I rally all of the non-existent strength that I had to start fighting back against this ridiculous invisible disease? Well, as I lay in my dark living room on my oh so supportive recliner I was browsing Netflix. I couldn’t focus on watching a movie so I was browsing documentaries. I found this one called Fat, Sick & Nearly Dead. I was feeling pretty Sick & Nearly Dead at the time so I figured what the heck. This documentary for me was my light at the bottom of the pit that I was falling down. It gave me that glimmer of hope that I needed to understand that fibromyalgia isn’t a death sentence. I don’t have to continue mourning the things that I’ve lost but I could start dreaming about the things that were to come in the future. I knew that it would be a very long and hard fight but I was completely ready for it!

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About the Author

Stephanie Sinagra

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Consummate Health Nerd ✌ always exploring new avenues of healing ~ learn w me! ?my dogs, ginger kombucha & healing people! #spoonie To learn more about my story visit here. Have a burning desire to email me? You can do that here!