Old 01-15-2018, 10:11 AM #1 (permalink)
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Unhappy Road to proper diagnosis: I suspect it's fibromyalgia

Hello to all forum members. I'm glad this community exists to help people that have been diagnosed and also the ones like me seeking for a proper diagnosis. Thanks for spending time trying to help others and sharing tips or just listening.

I'll try to keep my case simple. I've had chronic migraines for several years but it got worse when I turned 25. I got tested with an EEG and the results were very enigmatic to me. "Dysfunction of the frontal lobe" it said. Possibly the cause of my migraines. Long story short, I couldn't get proper assessment because I moved abroad and I just did it again. I have to wait for my paperwork to be done here and get a doctor assigned. That's why I cannot pursue a diagnosis immediatly.

I thought I had the situation under control and it wasn't super crippling until the generalized pain came to stay. Since last summer in 2017, I started to feel some kind of horrible pain in both my legs and my feet. It just began like that. It was sharp, burning, throbbing, caused me numbness and the sensation that I was being pierced by millions of needles such as when your limbs are sleeping even when I was in a normal position, especially sitting. Then the pain was in my joints, my shoulders, the base of my neck, my back, my torso and my belly/hips with the same sensations that I explained before. Suddenly getting out of bed was excruciating, like climbing a mountain. My sleep pattern got totally messed up and I started to wake up as tired as when I went to bed. The migraines themselves got worse. Breaks between migraine attacks vanished. Precisely because it was summer, the long sun hours hurt my eyes and made me feel miserable.

At some point I made the mistake to go to a forest with my family. I used to walk a lot and that's the reason why my legs are kinda strong and in good shape. I thought it would make me feel better, so I go hiking and I feel like I'm struggling. I don't understand why. When I get home I take a nap 'cause my body is screaming for some rest. As soon as I wake up, I get up to use the toilet and find out I can't even take two steps. I start to cry out loud and my husband has to help me and basically carry me to the bathroom.

This situation happened over and over again every time I had to go outside. I opted to stay indoors and plan my errands at least 3 days before going out. My body felt useless and crippled for a week afterwards. Really discouraging. At this point I had no idea what fibromyalgia was. I just knew that the darkness of autumn made me feel slightly better and hot showers provided with a brief but necessary relief (on the other hand, cold water *hurts* me like crazy). I stopped doing chores, I even stopped cooking, which makes me sad 'cause I truly enjoy it. I had to stop cleaning as regularly as I wanted to because I paid a high price after doing it. Even doing my hair seemed like a torture. All of this, plus of the fatigue and the mind absence. Sometimes, for some terrifying seconds, I don't even know where I am or what I'm doing. And I'm always tired. Walking hurts, peeing hurts (sorry for the TMI) and stretching in the morning hurts. Also, the pain travels. The body part that feels the worst every day may vary.

Worried after several weeks (maybe a couple of months?) of non-stop pain, I start researching about chronic pain and discover what fibromyalgia is. Not wanting to self-diagnose, I'm in denial for a while but the symptoms ring a huge bell and I can't keep looking away.

I just want to hear from you if my intuition is leading me to the right path, if it makes sense to you and if I should talk about this with a doctor, being straightforward and saying "I think this could be fibro." If that's the case, any advice to be heard by a doctor and rule other conditions out? I need to know what's going on because I feel like I'm disabled. I wanna be able to get proper treatment to continue my life. I wanna stop feeling my life is in "pause" button 'cause I cannot do anything I need and want to do. I'm starting to get super frustrated and depressed.

Thanks.
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Old 01-15-2018, 10:35 AM #2 (permalink)
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Default Re: Road to proper diagnosis: I suspect it's fibromyalgia

Hi and welcome.

Oh My your story sounds sooo familiar to me you could be talking about me although my symptoms did not start until my 40's. Im so sorry you are going through this.

However it wouldnt be right for me to say you have fibro although you have symptoms consistent with fibro but im not medically qualified in any way and it could be a number of other conditions that all need to be ruled out.

Please do ask to be referred to a rheumatologist and by all means bring up your suspicions and concerns.

You could take a shorter version of what you have written here for your doctors to read...all this information helps build a picture and im sure would help with diagnosis and hopefully some treatments that will help you manage your condition.

Take good care and let us know.x
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Old 01-15-2018, 12:19 PM #3 (permalink)
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Thumbs up Re: Road to proper diagnosis: I suspect it's fibromyalgia

Quote:
Originally Posted by diamond View Post
Hi and welcome.

Oh My your story sounds sooo familiar to me you could be talking about me although my symptoms did not start until my 40's. Im so sorry you are going through this.

However it wouldnt be right for me to say you have fibro although you have symptoms consistent with fibro but im not medically qualified in any way and it could be a number of other conditions that all need to be ruled out.

Please do ask to be referred to a rheumatologist and by all means bring up your suspicions and concerns.

You could take a shorter version of what you have written here for your doctors to read...all this information helps build a picture and im sure would help with diagnosis and hopefully some treatments that will help you manage your condition.

Take good care and let us know.x

Thanks for your reply. It gives me good insight. I will make sure to let my doctor know this in the (hopefully near) future. I will stick around and let you guys know how it's going. And indeed, this has been ongoing since... Uh, July 2017? That's why I started to research about "chronic".

I hope you have found ways to relieve yourself and have a good life in general despite this.
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