Hello and Can any of you help me?

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Hello and Can any of you help me?

Postby hemochromatosis » Tue Nov 20, 2012 11:17 am

Hi,
I am pleased to be joining this forum and chatting to some of you. I was diagnosed with hemochromatosis earlier this year and for those who have never heard of this it is a genetic disorder and in brief this means that we retain too much iron which then deposits itself in various organs, tissues and under the skin. It can be fatal if not diagnosed early enough as it's main recipient - The Liver - when unable to dispose of the iron can be affected by cirrhosis, cancer and other serious effects.

I have also been referred to a pain clinic, appt in January :( because I am struggling so much with joint and muscle pain and it has been suggested that I may also have Fibromyalgia, or chronic fatigue syndrome, which I had never heard of until I read up on it and seen some of the many comments and discussions on this board.

The most demanding symptoms, which I find are so similar to fibromyalgia are:
Symptoms

Abdominal pain
Fatigue
Generalized darkening of skin color (often referred to as bronzing)
Joint pain
Lack of energy
Loss of body hair
Loss of sexual desire
Weight loss
Weakness

My question to you all is; Have any of you been tested for or diagnosed as having hemochromatosis? I am trying to find out if there is any common ground. Thank you so much in advance for any response you can give me. Oh and the most effective way of first finding out is by a blood test to check how high your serum ferritin levels are? This is toooooo weird! :-?
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Re: Hello and Can any of you help me?

Postby FluppyPuffy » Tue Nov 20, 2012 3:24 pm

:wave: :wave: and :welcome: to the forum.

Sorry to hear that you could have FM or CFS, I hadn't come across hemochromatosis until you posted about it tho :-? :-? So I did a bit of Googlying to try and find out a bit more out about the condition. I found this on a forum http://www.dailystrength.org/c/Hemochro ... bromyalgia one of the posts says that people with HH are quite often misdx'd with FM due to the number of overlapping symptoms and similarities.

Aside from overlapping symptoms and similarities, I don't know if there is any other common ground. There may well be, to find out tho, you'll need to research it more, maybe find a forum/group for HHers and ask about possible links on there.

Hope you get some answers soon :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Hello and Can any of you help me?

Postby denys » Tue Nov 20, 2012 11:49 pm

Hope you get the answers you need from your doc :welcome: to the forum :wave: :-D :-D
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Re: Hello and Can any of you help me?

Postby shazq » Thu Nov 22, 2012 4:32 pm

:welcome: to the forum :wave:

:fingerscrossed: you get some answers soon.
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