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Hi .. this is my first time posting ..
My ferritin level is also at 4
my hemo is 9.3
tired doesnt begin to describe the symptoms that suddenly
came apon me .. i felt like i was going to faint and never wake up ..
i had vaginal pain, bladder pain
overwhelming weakness and fatigue
shaky, pressure in my head
tightness in my shoulders,
mouth/gum pain
eye pain /dryness
dizziness -
overwhelming fear/anxiety
my abdomen/intestines began to swell,
elevated fever
back pains / leg pains

went to er room/was given a rosefin shot
put on flagyl / levaquin .. all thinking i was
having a bout of stomach infection ..
I even had a cat scan ..
urine bacteria checked ..
all negative ..

but it wasnt until my internist told me i was anemic
and i started to read this board
did things start to make sense

i wasnt until i was told to increase my tandem plus 4x daily
and b12 injection once per week
by my hemotologist that i began feeling slightly better ..

im scheduled for an infusion this wednesday ..
i think i can make it there ..
right now, i still get very tired
but it is NOTHING like it was before ..
at least now i can do things without
thinking im not going to make it ..

i felt more tired with a 9.3 hemo then I did with
i was 6.0 .. 2 years ago .. maybe its because my
ferritin was higher then, not sure ..

i had gastric bypass in 2000 .. i never ate well
never had dumping syndrome so i never stopped my bad
eating habits .. BUT NOW .. i will ..
no more coffee and apple crisp all day ..

i never want to go through that experience again ..
It frightened me .. my body was breaking down ..
i looked gaunt in the face and my eyes look like
cows eyes .. every fibre in my body ached terribly ..

now i eat right, i even take black strap molasses ..
i am conscious of heme and non heme eating
and i eat iron enhancers not inhibitors ..
i have to take miralax to handle the 4 tandem iron tabs
but its okay ..
my gi pain from the iron isnt really that bad ..

all of this transpired within the last 2/3 weeks ..
i did a complete 180
i want to regain my life ..
even though i have a pile of medical bills coming ..

i have kids i want to enjoy ..
if anyone is interested .. ill keep you posted
in the infusion after effects ..
i expect pain after the infusion, i had it before ..
but i want my energy back ..
prayerfully its coming ..

im glad this is an arena for me to express my fears
and feelings about my anemia ..
its been horrible the last few days ..
ill get better, im determined ..
bye guys ..
Hi PlasticPetals,

Sorry to hear that you have been feeling so bad. You have a very positive outlook for recovery which is great. I was a strict vegetarian for about 20 years and anemia wasn't a problem until recently (previous blood tests have been fine). I have been on Ferrous Fumerate for just over 3 weeks now and feel no better. Had to struggle to get out of bed this morning with red eyes and heavy limbs. I will go back to my dr if things dont improve and see if it is just a blood thing. You take care now. Clare x
Hey Clare ..
thank you for your encouragement ..
i read somewhere that it takes a month for so once starting
iron supplements to begin feeling better provided there isnt any active
bleeding somewhere going un addressed ..
its been less than a month for me ..
but i am noticing a bit of a difference ..
last nite was the first time i felt heart paps from
my low iron .. but i did do alot around the house yesterday
so im not going to over do it today ..
please keep me posted ..
bye ..
Hi Guys ..
I had my infusion this past Wednesday ..
though im not completely back to normal
i am significantly better ..
it took a total of 6 hours ..

i can drive and not feel exhausted ..
i can spend the day outside and not feel exhausted ..
im tired yes, but it isnt remotely close to what it was ..
everyday i feel my strength increasing ..
but i can tell it is still an uphill battle ..

i will still take my oral iron ..
i never want my numbers to drop off so significantly ..
especially since i have iron absorb issues ..
im trying to juggle the miralax and the calcium
both which inhibit iron absorb is still a slight issue for me ..

still feeling vaginal pain ..
since all tests cat scans, ultra sounds, etc were negative
we are leaning toward vaginal dryness due to natural
estrogen decreasing ..
the constant pain is sooo irritating ..

i refuse to use estrogen creme ..
i dont want to risk the side effects ..
i want to try the natural route ..
but so far nightly iv had to take pain meds because the
irritation is wayy to unbearable ..

sadly at times you trade one level of discomfort for the other ..
thank u for letting me share and vent ..
PlasticPetals ..
Hi PlasticPetals,

Sorry to hear about your pains. From what I have been reading, it is a constant struggle with anemia but a lot of people do get better over time. I find I trade aches and pains on a daily level - sometimes my face and/or lower leg will feel a bit numb (a feeling rather than on touch), recently my left thumb and big toe hurt at the joints. I feel exhausted on a daily basis which never really changes. Dr will do a blood test after 3 months to see if my levels have risen (fingers crossed). I have seen a couple of different drs to get a broader picture and so far the drs think my symptoms are in line with iron deficiency anemia.

At Some points I feel a bit better during the day (definately not first thing in the morning;)) and then by early evening its crash time! I am still able to work my two part time jobs - care work and cleaning, I have had to push myself but I don't get paid if I go off sick. I find if I go for a walk with my kids its the next day when I really feel the pain and fatigue. Anemia to me is like a creeping ivy, I didn't notice its full effects and then it grabs and takes hold.

Hope everyone is doing ok, there are great people on here x
Hey Clare ..
I appreciate your posts ..
Yes, creeping ivy is an excellent way to describe this illness ..
its "insideous" ..
I am the exact same way as you ..
i used to be able to walk 4 miles daily ..
i hope i can get back to that ..
now .. if i walk i no longer measure
but i let my energy dictate ..
(it isnt even close to 4 miles, i know)
sometimes if i have to shop for daily essentials,
i use that time to carry myself in a way that mimics
exercise walking to kill 2 birds ..
because u know that since our reserves are low
doing too much in one day throws us off too much
that is until we get ourselves built up again ..
(if that will ever happen)

what bothers me the most is the effects of anemia
on my neuro system .. i hate the feeling of brain fog,
the shaky anxious feeling of unbalanced, un properly
oxygenated neurons .. it feels as if your nerves are frying
.. its HORRIBLE ..
at times i want to ask for anti anxiety pills,
but i know my system has to heal
ill be patient ..
(since white wine is a iron absorb enhancer
i a little with my meat at dinner with a vit c chewable)

im glad i have you to share this with ..
unless u experienced 'this' you have no idea ..

my pains are in my fingers, right ribs, left front
of tooth and toes .. when it hits me hard, i just lie down ..

im glad my vaginal pain had really subsided ..
its amazing to begin figuring out how these physical pains
are linked to lack of oxygen to different body parts/organs
that may be weak to begin with ..

rest and stay hydrated and properly nourished ..
Clare, i will hold u up and encourage you ..
we will fight this fight together ..
Keep smiling .. our kids need us!
Hello PlasticPetals!

I want to say I hope you are feeling a little bit better each and every day. It does take a little time for the infusions to help. My numbers were similar to yours (hemo 8.8, ferritin 4) before my infusions I started about a month ago. After my first two infusions my hemo was an 11.2 and my ferritin was a 52. So I am sure you will see good improvement as well! The first few times I went I was asked by different nurses "were you a gastro patient?" (no, but apparently this is common with you guys!)

I am sorry to hear you had such bad symptoms. Are you sure the bladder and vaginal pains were caused by the anemia? I have not heard of those as anemia symptoms before.

Chin up and stay as strong as you can! :)

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