Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I just had my 2nd phleb and I am feeling better than I have in years. Chronic back and hip pain have plagued me for years and it has been getting progressively worse until now.
I have had great difficulty sleeping because of the chronic pain. Even turning over in bed was painful, but tonight when I was turning in bed, I realized that I don't hurt like I used to!
I hope this turn of events continues to get better because I was at my wits' end and believed I would have to live the rest of my life in great pain.
I did some errands and walked around in some art galleries with my daughter and my boyfriend yesterday and now I realize that I didn't get exhausted like I used to! And my back isn't killing me!
I am so happy about this. Maybe there is hope for me and I can get my old self back!
I have had great difficulty sleeping because of the chronic pain. Even turning over in bed was painful, but tonight when I was turning in bed, I realized that I don't hurt like I used to!
I hope this turn of events continues to get better because I was at my wits' end and believed I would have to live the rest of my life in great pain.
I did some errands and walked around in some art galleries with my daughter and my boyfriend yesterday and now I realize that I didn't get exhausted like I used to! And my back isn't killing me!
I am so happy about this. Maybe there is hope for me and I can get my old self back!
I too had a similiar experience and could not believe the improvement after my first couple of Plebs, however that has been short lived and the hip nd back pains are back with a vengence.
So bad that my Heamatologist sent me for MRI scans on both hips, my pelvis and my back and I am awaiting the results.
I spent an hour in the MRI scanner.. that was an experience in itself.
I now also have problems with my good knee.
I am now on maintenance with the specialist working out how often I will need to give blood to keep my level down.
I have read that it takes 2 years after being de-ironed to feel the full benefits, as I still have problems when walking as it is like wading through water and very tiring.
I am also still very fatigued, and am hoping that both the above will start to improve over the next months.
Dougl talks about having other metals chelated from our bodies as it has helped with his arthritis and I am going to look into that as well.
I hope you pains stay away,
Take care
Regards
Steve
BTW, I am 52 and as I look back in my life, I can see that there has been a slow progression of inflammation, pain, stiffness, brain fog, chronic fatigue, and depression - much of which is probably associated with HH.
I am 58, and like you when I look back I can see so many of the things that the doctors could not explain that were obviously down to HH.
Take care have a great weekend, I am just finihing work, so my weekend is starting.
Regards
Steve
I was 60 this year and I also can see looking backwards that I had symptoms for a long time although they did not become really serious until about 3 years ago when I could hardly walk, sit or turn over in bed due to hip and feet problems. Then it took another 2 years to find out I had HH. My joint pains have reduced, as has the tingling in my fingers and toes and the brain fog which became alarming at around easter 2014. I began to wonder if I was going to get dementia: I have a fantastic memory and I began to forget simple things such as which actor played the lead role in a film which I saw the previous week - just an empty space where a thought should have been, but that has improved dramatically since treatment started. There is degeneration in my hips and feet so that is here to stay unfortunately. Physio exercises really helped with my back as they made my core muscles stronger. I have not experienced depression or fatigue symptoms.
Take care, Christine