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Life With Fibromyalgia

Feb 07, 2016 5:44 AM

I am a left-of-center nerdy, mother, girlfriend, sister, daughter, musician, writer, full-time fangirl and fibromyalgia sufferer. I have had strange health issues my whole post-puberty life. Endometriosis, (endometrial tissue that grows outside of the uterus and causes heavy periods, infertility, organ and tissue damage and loss and debilitating continual abdominal cramping and pain) was the worst of them. And on top of such severe pain and cramps, it ended up costing me the losses of my right ovary, right fallopian tube and my appendix. It scarred my internal walls and permanently damaged my bladder causing many issues, surgeries and treatments as well. After 7 laparoscopic surgeries to laser out the endometriosis, years of massive cramps and heavy periods, scarring from the illness and the surgeries and only retaining half of my reproductive organs (on top of this disease leaving most women with little to no fertility) I should have been unable to have children! But I was so lucky to have two beautiful and amazing [savant] children! For years after, the doctors advised me to have a hysterectomy, but I just wasn't ready for such a massive step. I finally decided I couldn't lose anymore time to the constant pain and body organs (three and counting) to the damage, caused by Endometriosis. At 35, I decided to finally go forward with the hysterectomy. I had it done laparoscopically, the least invasive supposedly. So my doctor decided to leave the cervix and my remaining ovary, to avoid hormone problems. This is when my life was about to lose its freedom, to my body.
Immediately after post-op healing, I felt different, like I was slowly being drained and as if I had the flu all the time. My temperature permanently lowered by a whole degree and then some. I had started to get migraines for the very first time in my life. My fatigue, (which I can honestly say now, I never really understood how bad fatigue could feel) was so monopolizing, so nauseatingly painful and palpable and my skin even started to hurt, like having fever pain with extreme sicknesses. My joints became slower in ability and ease. My feet for swollen constantly. My muscles, my skin and my bones ached to the core of my being, as if recovering from a massive and crushing accident. It was not ok. And I was terrified and couldn't even properly explain to anyone, especially the doctors, how god-awful this was. I stopped working. I went to a specialist and had literally about 25 or so vials of blood taken for the gauntlet of tests. I had my hormones checked and was put on anti-depressants. Even though at this time I was so happy (other than the war happening in my body) and very much in love with my new boyfriend!!
I was finally diagnosed with fibromyalgia in early 2013 and since then my body progressively got worse.

I know have ravaging arthritis in my hands, knees and hips especially. Massive ear/jaw nerve pain. Extreme tenderness all over the "frame" of my body, my sides. Inner and outer elbows and knees and my upper arms and shoulders get insanely tender and hurt badly during my "flares". Sciatic and intense leg and back muscle pain that are awful happens as well. Shocking and pinching feelings all over and feelings of being touched when I am not. Nerve pain everywhere when the flare ups happen. I experience bouts of vertigo, where my lips and fingers go numb and I can't move my eyes without dizziness or spinning. I have extreme problems with my equilibrium and balance.
But the kicker is that it isn't all physical....it is cognitive as well. My mind is so "foggy" and everyday words and names, of things I know so well, just fall out of my brain into nowhere! I say things out of order or backwards sometimes and have so much trouble having and successfully holding even a small conversation at times. I stutter and stumble, fall and drop things often. But usually my hands and feet hurt so badly I am unable to even try to hold onto things or go walking where I can't sit down somewhere nearby. I fear being around new people or those other than my close family because of my brain and I sweat so badly in public situations, because of the anxiety, no matter if I hot or cold and I feel like my body can't regulate temps.
But the worst for me that I can't seem to combat with any meds or whatnot is my insanely extreme fatigue, and this is what I hate the most about having this illness. You get so weighed down, exhausted and lethargic, that you literally are sick to stomach and your skin crawls. Where even walking to the kitchen or bathroom are almost unbearable. Your muscles and bones already ache and throb, but now they are heavy and pretty much useless. Those are the days I feel the worst about myself, because my beautiful, sweet, supportive children have to fend for themselves usually. How can you explain to them or anyone that you are no longer in control of basically really anything in your own body anymore. It's not like having the flu, where an end is eventually there. It's unending, unrelenting, invisible and untestable and a lot of the time dismissable by people, even those you trust. I have become a prisoner in my body. I have lost friends and any kind of social life. I have lost respect from people I trusted but mainly myself. I have lost so much time and experiences with my children that I will never get back. I have lost any feeling of outer beauty, as my hair falls out and I've gained such massive amounts of weight. I've lost pride from not being able to do grocery shopping, let alone work anymore.
I feel all this but still have hope. I still search and get tests and scans and see specialists and take supplements and vitamins and change my diet. I still plan for the future and enjoy the little victories and rewards of life when they come. I still try to educate those close enough to me, that care and try to reach those who don't understand or even believe. I take every non-fatigued second to be with my kids and my amazing boyfriend. I enjoy the small breaks I am allotted from this illness and pray for them to happen more often. I have a great little support group made-up of my selfless boyfriend, my kind and patient children, my ever searching for my release of this pain mother and my supportive and understanding best friend and sister.

I hope this lets you into my life, just the life of someone with fibromyalgia or understand the ones you know already a little better. Mostly I hope it softens your heart to our plight and those who have chronic illnesses and helps you be thankful for your health and support system.
Please support Fibromyalgia research and care!

Feb 07, 2016 6:51 AM

Well said!

Feb 07, 2016 6:57 AM

I agree, couldn't have described it better myself 💖

Feb 07, 2016 10:33 AM

Thank you for sharing. I'm new here and your story has made me feel that I'm not alone in this pain

Feb 07, 2016 2:57 PM

Thank you for your story. 💆

Feb 09, 2016 4:54 PM

Well said. I could not have described it any other way. Thank you for sharing.

Feb 09, 2016 9:30 PM

Wow! That sounds very difficult! Have you looked at Nancy's Nook on FB? They have great info on endromitrosis and the many misunderstood effects it has on the body. They are also another great support system.

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