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Mika96

New member
Joined
Dec 12, 2015
Messages
1
Reason
DX FIBRO
Diagnosis
12/2015
Country
AU
State
Queensland
Hi everyone!
I'm new here, and only very recently diagnosed with FM (and a few other things), two days ago. I've been in and out of hospitals and medical centres for the last 18 months, and despite finally having a diagnosis, I'm still having multiple scans and tests.
I've been having issues with my health for a long time, but particularly the last year and a half. Originally doctors though I might have Crohn's, but after multiple scans and tests coming back negative, they weren't sure. More scans, more blood tests, CT's, Ultrasounds, MRI's, etc and still nothing, they started to question if there was anything wrong with me at all. I knew what I was feeling, I knew I was in pain but due to there being no solid evidence, I started to question myself. Maybe I'm just over-exaggerating, maybe it's all in my head, maybe I'm imagining it, right? My pain kept getting worse, spreading from my back down to my thighs and knees, from my shoulders to my neck, arms and hands. I was getting migraines every few days, my sleeping pattern is still all over the place, lights became overwhelming and painful to look at, I began getting irrationally cold in 27 degrees (celcius). I've struggled with depression and anxiety most of my life, but they both got worse throughout all of this. My memory became quite bad, I'd repeat myself a few times in a row because I couldn't remember if I'd already spoken, I started falling behind in my classes (I'm a graphic design student) and overall my concentration was pretty bad.
All of these things are continuing to get worse, and these last few days have been some of the worst I've ever experienced. I guess my point in posting here is to try and connect with people who understand fibro and CPS, people who have had similar experiences and I guess to find some good ways to manage the pain and get some proper sleep!
At the moment I have a wheat bag that heats in the microwave on my knee, which I originally bought to help with period cramps (another thing I have questions about, does anyone else get ridiculously painful periods?), but so far it's been pretty good in relieving some pain in my back and knees.

What are some of your experiences leading up to, during and after diagnosis? What are some things that help you guys, whether it be with managing pain, sleeping, getting around (I require help walking sometimes on really bad days), or dealing with insensitive or ignorant people regarding your illness? I only ask because I'm getting quite frustrated with the amount of people who stare or give me dirty looks when I use the disabled seats on the bus or walk too slow for their liking etc.
 
I'm sorry you are going through this. I hope with a diagnosis you are on your way to some relief. Yes I've had horrible cramps the last couple years. I did read somewhere that it is a known symptom of fibro.
 
Your symptoms/life leading up to it sound like mine (I was just diagnosed last week). Are you on meds do fibro yet?
 
Oh, I almost forgot, my doc prescribed voltaren gel for me, so far it is a God send! But everyone responds differently.
May you have a pain free day. Gentle hugs
 
Welcome Mika! It's a tough illness...our physical suffering can be hidden from the view of judgmental eyes. My take away from all this is to strive to be a more empathetic and understanding person. Like they say....you don't know until you've walked a mile in someone else's shoes. I love my wheat warming bag as well. We call it the "warmy worm", it's a long rectangle. The cold sensitivity might be related to raynauds syndrome. My fingernails actually turn purple quite frequently. Raynauds can be a comorbid condition with fibro. I believe it's a capillary blood flow issue. Good luck with school!
 
Mika,
I too get stared at as I have a handicap parking permit and I have to use the disabled seats when going to events on a bus, to go grocery shopping I have to use a seated motor cart. Ignore them, they are ignorant and not worth your time. You know you are sick and that's all that matters. Fibromyalgia is a disease that requires every other illness to be ruled out and it attacks various parts of the body whenever it wants. Are your doctors prescribing you any meds for fibromyalgia. I don't know what the meds are that they use for Fibro in your area, but you need pain relief. Use the forum to keep getting support and to obtain knowledge about the disease. Read about fibromyalgia so you can educate yourself about the other associated syndromes. I went through all the ultrasounds, MRI's and even an acid reflex test, the ultrasound showed my gallbladder wasn't functioning right, but then when repeated was fine. This disease plays games, and yes as my doctor stated when I asked why she diagnosed me with Depression, any chronic pain condition is going to make you depressed. Hope this helps
Kristine
 
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