Hi folks!
As some of you may remember from my story, I have a hereditary blood disorder (hereditary spherocytosis) which causes hemolytic anemia (my red blood cells get destroyed by my body before they reach maturity). This rare blood disorder was diagnosed when I was 44 years old, even though I have had spherocytes since I was born. HS is a little bit like sickle cell anemia -- my blood cells are shaped differently than normal blood cells. Normal blood cells are shaped like a donut. Mine are shaped like a sphere. The spleen sees them as foreign invaders and kills them.When I was diagnosed with this in 2004, I specifically asked several doctors (including the hematologist who diagnosed me) if the anemia is causing my chronic pain, fatigue and other chronic symptoms consistent with fibromyalgia. I was specifcally told "NO".
Not satisfied with that answer, I have spent the last four years (and most recently the last couple of months) researching everything I can find on anemia. If you do general searches on Google for anemia, you will find the same information that the doctors know (i.e., anemia causes fatigue, but that's about it).Wrong!! My dears, anemia causes muscle pain, headaches, shortness of breath, weakness, extreme bone-crushing fatigue, red or tea-colored urine, back pain, leg pain and a whole host of other complaints.
In my most recent searches, I Googled "anemia+fibromyalgia" and was delighted to find out that many experts believe anemia may be a cause of fibromyalgia. What a relief! I knew I wasn't crazy. Now, if you have read this far... please understand that my anemia is a hereditary form that cannot be cured (unless the spleen is removed, which I am not willing to do).
Most women have iron-deficient anemia which is easily treated with iron supplements (I can't take iron supplements because my system stores the iron and can create iron-overload which can be very dangerous requiring phlebotomies yuck!).Other people may have B-12 deficiency (so-called pernicious anemia), which is also easily treated.
I urge everyone with fibromyalgia to ask their doctors to test for anemia. It is discovered by a very simple blood test -- in fact the very blood test the doctor takes at a routine physical. If you are anemic, you probably have one of the treatable types -- follow doctor's orders (take iron or B12 depending on what the doctor discovers), and you may see a marked difference in your fibro symptoms.
If you are unlucky enough to have a rare blood disorder like I do, well, you may have just gone your whole life with it (like I did) and be completely unaware. I had a smart doctor who noticed "hemolysis" (destruction of red blood cells) and he sent me to a specialist. The other 7 doctors told me to take iron (!!!??? which, in my case, was completely wrong since I can get iron overload).
Google "anemia+fibromyalgia" for more information.
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As some of you may remember from my story, I have a hereditary blood disorder (hereditary spherocytosis) which causes hemolytic anemia (my red blood cells get destroyed by my body before they reach maturity). This rare blood disorder was diagnosed when I was 44 years old, even though I have had spherocytes since I was born. HS is a little bit like sickle cell anemia -- my blood cells are shaped differently than normal blood cells. Normal blood cells are shaped like a donut. Mine are shaped like a sphere. The spleen sees them as foreign invaders and kills them.When I was diagnosed with this in 2004, I specifically asked several doctors (including the hematologist who diagnosed me) if the anemia is causing my chronic pain, fatigue and other chronic symptoms consistent with fibromyalgia. I was specifcally told "NO".
Not satisfied with that answer, I have spent the last four years (and most recently the last couple of months) researching everything I can find on anemia. If you do general searches on Google for anemia, you will find the same information that the doctors know (i.e., anemia causes fatigue, but that's about it).Wrong!! My dears, anemia causes muscle pain, headaches, shortness of breath, weakness, extreme bone-crushing fatigue, red or tea-colored urine, back pain, leg pain and a whole host of other complaints.
In my most recent searches, I Googled "anemia+fibromyalgia" and was delighted to find out that many experts believe anemia may be a cause of fibromyalgia. What a relief! I knew I wasn't crazy. Now, if you have read this far... please understand that my anemia is a hereditary form that cannot be cured (unless the spleen is removed, which I am not willing to do).
Most women have iron-deficient anemia which is easily treated with iron supplements (I can't take iron supplements because my system stores the iron and can create iron-overload which can be very dangerous requiring phlebotomies yuck!).Other people may have B-12 deficiency (so-called pernicious anemia), which is also easily treated.
I urge everyone with fibromyalgia to ask their doctors to test for anemia. It is discovered by a very simple blood test -- in fact the very blood test the doctor takes at a routine physical. If you are anemic, you probably have one of the treatable types -- follow doctor's orders (take iron or B12 depending on what the doctor discovers), and you may see a marked difference in your fibro symptoms.
If you are unlucky enough to have a rare blood disorder like I do, well, you may have just gone your whole life with it (like I did) and be completely unaware. I had a smart doctor who noticed "hemolysis" (destruction of red blood cells) and he sent me to a specialist. The other 7 doctors told me to take iron (!!!??? which, in my case, was completely wrong since I can get iron overload).
Google "anemia+fibromyalgia" for more information.
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How is your doctor treating your hereditary spherocytosis?
ReplyDeleteI was diagnosed at age 44 and have a very mild case. They just do bloodwork three times a year, and I take folic acid to keep bone marrow strong to produce RBC. My father had HS, which also was diagnosed when he was an adult. He had a hemolytic crisis and had to have his spleen removed in an emergency surgery, and was hospitalized for several weeks (back in the 1940s). Nowadays, from what I understand, they diagnose it at birth and take out the spleen when the patient is still a child (in serious cases). Hope this helps.
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See above comments. My anemia (personally) comes from an inherited blood cell condition that I am treated for by my doctors with folic acid supplementation. Thanks for the feedback.
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