Posted , 5 users are following.
i stopped my venesection in october, i have started the maintainance stage but i still feel fatigue and now joint pains, my next appointment is in feb i thought the fatigue would improve, does anyone else still feel fatigue when your levels are normal
ally
0 likes, 7 replies
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tom_70042 ally_4949
Posted
ive been in maintenance for a year and have terrible joint pains and hips now hard to walk
been diagnosed by consultant with CPPD which is pseudogout its a form of arthritis
it seems that it quite common for those with our condition
calcium crystals form in the body soft tissues and i can tell you it gets quite hard ro function
treatment is steroids and anti inflamatories
id go see a rheumarologist and see if your pains and discomfort relate to the above
we are i am afraid prone to arthritis , gout and CPPD
stay healthy best wishes Tom
tom_70042
Posted
fatigue continues also and it never seems to get better i know what it means and how hard it is its very different to just being tired fatigue feels like yiuve been hut by a truck
sheryl37154 tom_70042
Posted
Hi Tom, your description of "calcium crystals form in the body soft tissues" intrigued me so I googled it. The symptoms sounded my mine, but I don't have high calcium and I balance it with Vit D3. As calcium is proven to help reduce the uptake of iron, we might be taking/eating too much calcium, but it is not reflected in my test results.
It was very noticeable that the symptoms for this was very much like those of haemochromatosis.
tom_70042 sheryl37154
Posted
Hi Sheryl
Bit late but happy Australia day to you and yours
Was hoping to be over for the Aussie Open in Melbourne but when you cant walk or stand for long its not on
Seems I am immune to steroids only 5% of people are it seems on a new drug to dissolve crystals slow releasing and they have put me on a course of hydrotherapy to help flexibility
hope you enjoyed australia day we certainly did in brisbane in 2015
used to come over a lot to Sydney working days I was with the dollar factory Macquarie for 15 years an overseas CEO glad im out of it
all the best stay healthy
ally_4949
Posted
Thank you for your replys, yes the fatigue is awful its not like normal tiredness, im worse in the afternoons, just thought i would feel a bit better after levels being normal
ally
chris52931 ally_4949
Posted
Seems to vary , some people feel much better on maintenance when levels get back to normal , others like myself after years still feel very ill and look like a ghost, ..hope you improve Ally
sheryl37154 ally_4949
Posted
Ally, my ferritin reached normal levels July 1999, however I still suffer terrible fatigue and aching body. I have very short days. The last half is a struggle and I must lie down by 7.30pm. I had a 9 year delay of diagnosis since onset of severe symptoms and I think that is part of the cause. It is only last year that my TS% reduced to normal levels and that is most likely a cause too, given that Prof Brissot of Rennes, France research found that a continued high level of TS% was "toxic". This was after 20 years of 3 monthly maintenance vx continued even though my ferritin was in the 20s.
I had a breakthrough when I started taking 100mg of aspirin per day to thin my blood as it was clotting during vx. I suddenly felt lighter and walked faster. However, while I managed to do more during the day, I still have short days. Also, leaving work (years ago now) took the pressure off me as it required me to wake early and I was often too tired to get dressed however I had to keep pushing on.
I have been having 3 monthly B12 injections mainly to increase volume in veins, but I can't say it gave me a miracle boost like it did for my husband. My Vit D was deficient and only a practitioners brand of Vit D3 forte drops. A research team also recommended CoQ10 and Vit E for damaged mitochondria.
Sorry for the bad news, but that is way it is for some of us.