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crystal_price

Member
Joined
Jan 12, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
11/2013
Country
US
State
OH
Hi everyone! My name is Crystal. I unfortunately was diagnosed with Fibro in November. I kinda knew I would eventually be diagnosed with fibro because my mom has been suffering with it for 10+ years. I have been going through some sort of illness for the last five years. If it wasn't some mystery aliment that I couldn't describe well enough for a doctor to take seriously then I was catching whatever virus or bug that was in the Dayton area.

My journey with fibro went into overdrive about two years ago. I was having horrific chest pains. I was admitted to the hospital for three days to evaluate my heart. I was scared to death. Come to find out it was coastrochondritis. I had never heard of that and couldn't believe that inflammation in the chest wall would have felt like that. That's when the merry-go-round of meds started. Steroids, vitamins (I was extremely vitamin d deficient), muscle relaxers, and eventually gabapentin.

Gabapentin was just as evil as this disease is. Last year, out of know where, I just started to feel strange. I couldn't put it into words. My husband was very confused about what was happening to me. I felt mentally lost and I physically felt like I had this strange energy going throughout my body. I felt like I had to move different parts of my body to release this strange feeling. Within an hour of this starting, I had my first seizure. I was rushed to the hospital, unconscious having a grand mal seizure. Of course, since I had no history of seizures before it had to be related to stress. More or less it was all in my head! I had multiple seizures weekly for 6 months before I was taken off all my medications. I haven't had one since. You honestly wouldn't think an anti-seizure medication would cause seizures but they do!

It took me some time to begin to feel human again. Almost the same time my brain started to think somewhat normally and my body began to move and feel again the fibro symptoms reared their ugly heads. I guess fibro wanted me to know how ugly of a disease it is because it wanted to attack my abdomen. I went to two specialists, had one surgery, multiple tests, new medications, and doctors who didn't have a clue what was wrong with me...so the easy answer was stress. Who wouldn't be stressed?

After all of this, my life seemed to be turned upside down. I was so angry, frustrated, and sad. I was pushing everyone away from me. I began questioning myself. Was all of this in my head? Did I have a mental illness that I didn't know about? Was I just out of shape? I questioned every aspect of my life. I actually thought death would be better than what I was dealing with on a daily basis. It all just seemed too hard. I couldn't find joy in anything. After many fights and almost leaving my husband, I decided to go back to counseling. I hadn't been in over a year. My counselor was shocked at the downward spiral I was on. He said it was physically noticeable but mentally and emotionally I was a different person. He said I was extremely depressed. I don't know why that came as such a shock. Who wouldn't be depressed? He got the ball rolling for recovery for me. He referred me to two great doctors who actually listened to me. Who prescribed the right medications and tests. Who actually took the time to discuss this nasty evil disease with me.

I'm two months into having a diagnosis and I'm still angry and sad. I go to bed every night hoping I will wake up the next morning as my old self but never do. I still don't know how to pace myself or listen to my body. I still believe I'm superwoman and can do everything. I mourn for the life I could of had if I never had this. It's a struggle every day physically and mentally for me but I'm still trying.

I wish this disease upon no one and I'm saddened by the lack of support for those suffering from this. I am glad I was able to find this forum to get help for myself and maybe help someone else! :razz:
 
Crystal Price,
Welcome to the forum. I can not stress enough the fact you need to loose the superwoman additude. Trying to continue multi-tasking with fibro is a self-defeating way to treat yourself. Try to slow down and do a few chores a day and don't try to be a perfectionest anymore. We all had to learn this the hard way and severe pain is the end result of not slowing down.

I think there is not anyone on this forum who does not wish that they would wake up some morning and be their old self again. Most of us with fibro were go-getters, we worked hard and got things done, until fibro showed up.

Please take time to read through the pain management and alternative methods sections and read the back posts as well. Learn creative ways to pamper yourself and how to relax. I am glad to hear that you went back to your counseler and that he is helping you with getting back to being someone your husband knows and loves. Look forward to seeing more of you on the forum. :)
 
Thank you...I really appreciate it! The superwoman act is so hard to let go of. I feel lazy or I'm not contributing to our family. I've gotten better over the last year. My body kinda forced me into it. Seizures tend to take away your ability to function. I almost feel like I need to make up for the 6 months I couldn't do anything. I'm still trying to accept all that comes with having fibro. I just wish it wasn't true!

Thanks again!
 
Your very welcome. I did the superwoman act for a longtime and it was because I was always very good at what I did, having a housekeeping service. But all I did was run myself into the ground until I had to quit working and was in bed for three months. It is important to back off and only do a bit at a time and when the pressure of this added stress is gone, you will feel much better as your muscles relearn how to relax.
:) :)
 
Hi Crystal! Wow you sure have been through a lot! I am on gabapentin but never experienced what you went through. I'm so sorry. I definitely get the superwoman act. It took me a long time to not do so much when I feel good. Sometimes I still forget and pay for it with pain. This cold weather where I live this winter has wrecked havoc with me and my flares. I still work but have missed so many days it's not even funny.
 
Welcome, Crystal! I have to agree with the others - the superwoman act will make your condition worse. No one will blame you for dropping everything and focusing on taking care of yourself. Make sure you're open and honest with your husband, who can be an amazing support for you. I don't know what I'd do without my husband, who I truly rely on at this point even though we were both fairy independent and capable people when we got married.

You're not alone. fibromyalgia sucks. A lot. It does dominate your life. What's really frustrating for all of us is that some methods of treatments work very well for some of us, and might make others with fibro much worse! I can't take prescription drugs without major side effects - my body is over sensitive to food, drugs, and treatments. I really have to rely on naturopathic treatments and methods of healing, which thankfully is working very well for me, while others can't get enough relief that way. Don't lose hope. Keep digging to find what works for you - it might take most of your life to figure it out. But don't lose hope.

Can you explain to me what coastrochondritis feels like? I've never heard of it either, but I've had burning sensations in my chest that don't seem related to heartburn or my heart.
 
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