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21 With Fibromyalgia

NikkIScorpioNNikkIScorpio Posts: 3
edited 02/05/2015 - 12:33 AM in New Member Introductions
Hey everyone,

My name is Nikki and I was diagnosed with fibromyalgia about 1 1/2 years ago, after experiencing chronic fatigue and different types of pain for 3 or 4 months prior. Almost every woman on my mothers side suffers from it as well, so I guess it's not suprising. It has completely changed my life and I still haven't found a good way to deal with it, if there is one. And I know I'll get asked about how sure I am of my diagnosis, and I am very sure. I've been diagnosed by 3 doctors and have gone through comprehensive exama and tests and blah blah blah. I just feel defeated and I can't seem to get anyone in my life to understand. Oh, and I forgot about the meds. I take 400 MG of neurontin 3x/day, 100 MG of Ultram 3x/day, 800 MG of ibuprofen if needed, 4 MG of Zanaflex 2x/day (which I usually only tale 1 of per day, at night), 5 MG of Ambient 1x/day. I was taking Savella for 2 months, which was really helping, but I'm having issues with my insurance covering it, so I've been off it for a few weeks now. I take my meds exactly as prescribed, and if I don't need it, I don't take it.

Literally all I do is lay in bed. I read, I watch tv, and wish I had someone to talk to. I don't know what I'm supposed to do with this illness. What is someone supposed to do? It's not like I'm 40 or 50 with a good, well-lived life behind me. I don't get to be a young adult. Im 21 with a genius iq, half of a college degree, no job and what really feels like nothing to look forward to. I feel like my life has been snatched right out from under me. I don't know how to get better. I feel like an imposter in my own body. I can't do hardly anything that I used to. How do I deal with that? And it's not even just the unpredictable, varied pain. It's the headaches, the IBS, the fatigue, the confusion, the depression. It's endless really. I want so badly to make the best out of my life, I just don't have the slightest idea as to where to begin.

Does anyone have any advice? And please, don't be hateful.



  • LizLiz Posts: 7,832
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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
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  • itsautonomicitsautonomic LouisianaPosts: 1,813
    Nikklscorpio, I know you mentioned you had extensive testing and 3 doctors verified the diagnosis of fibromyalgia, but could you give a bit more info on what actual testing they did and what testing they did to rule out other things? I was told by multiple doctors that fibro could be to blame and ultimatly it was not , but I would never have known that without expensive testing at some of the top teaching hospitals in the US. Fibro is a real and devestating disorder, but also one that gets misdiagnosed many, many times as a way out for doctors when they cannot find the answer to problems.
    I was diagnosed with autonomic disorder, small fiber neurapathy, central sensitization, and what looks like B6 toxicity. All can be mimics for fibro and very hard to diagnose. I had all the symptoms you listed and many more. Looking forward to talking with you about all your symptoms and comparing. I can honestly say I am treated so differently with the results of the testing vs when doctors were saying fibromyalgia, its opened up new testing, new treatments. Still devestating diagnosises but different avenues.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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