sticky blood & periods (APS)?

*Pook*

Hi SandyGirl,

No need to be embarrassed - that's excatly what health boards are all about. There is nothing worse than having scary, embarrassing things happening to you - it seems like that's what Lupus is about - random bizzarre happenings.
I'm not sure whether APS affects periods - Angelic would be the one to answer that! Also I have not had a period for several years - i have recurrent ovarian cysts so take a low dose birth control 28 days per month - I can guarantee I don't miss periods in any way!!!
It's probably good too as I have ?APS (we're getting there, only diagnosed a few months ago, started plaquenil etc) but from previous blood test results and the enourmous brain fog/pins and needles etc I suffer with I am fairly sure I have it.

Sorry I don't have an answer - I wanted to write back to you for moral support and hope you find an answer soon,

Take care,

Pook

AngelicBrat

Hey guys,

No need for a bag on your head, that is life! My period used to be completely full of clots and very thick before I was put on the blood thinners. I used to get VERY bad pain too! With the blood being thinner, I have noticed that my period is much better and less painful. SandyGrl, I am getting more and more convinced that you too have APS! Pook- The Plaquenil will only help the Lupus symptoms and the APS must be treated by thinning the blood out sweetie! How are you doing? Been thinking about you the last while.. hope everything is improving Talk to you both soon,

~Luv, Angelic

*Pook*

Hi Dana,

Thanks for thinking of me - I haven't been too good at all. Actually I feel worse - like a zombie most afternoons - my veins feel like they're going to burst, even my eyes feel puffed up - I have been waking up through the night with swollen hands and feet. My friends all think I'm cranky with them because I get around without expression on my face, I just can't be bothered I feel like I'm in total fog (confused/dazed) - seems to be almost always in the afternoon - i feel like myself in the morning. My feet right up to mid calf turn purple if I sit still for longer than 5-10 minutes.
I haven't visited the board much lately - I don't feel tired just weird!
I thought I'd be o.k. in the sun if I wore a hat and sunscreen - WRONG - first big lesson there - had a whopping migraine which lasted two days.
I have been on 200mg Plaquenil for almost 6 months and at the moment feel worse....
It does seem like a vein thing - one in the side of my neck gets electric shocks and aches sometimes - I look like spiderwoman when I get out of the shower. I have lost 7lb in the last few weeks, I'm not sure if it's the gluten free diet or what's caused it.

How are you going? I have been wondering about you too!

Anyway, sorry to load you up with all my stuff but friends/family just look at me like I'm mad - except for my kids who have been fantastic and lovely and so understanding - god bless them they are only 12 & 9 years old!

Sending my kindest thoughts to you -

Gina

SandyGirl

Hi Angelic, Hi Pook,
Thanks again for the answers. Well, it is 6:30am & I just about gae up on sleep, this is the 3rd time I am waking up & my arms have that weird feeling & my hands are swollen. Pook are your hands swollen because of APS? How long does an APS test take to come back? I am scared that something is going to happen to me in the meantime! I hope this asprin I am taking will help it. I am extremely dizzy, and there is also a ringing in my ears?? This is such a joy. Why if you are both on meds do you still not feel well? is it always like this? or are you "Flaring" and then it gets better?
I have been feeling worse & sorse everyday, I don't even know what to do about it. I need to feel better soon it's making me nuts, and I am making my family nuts, they don't know what to do for me, my mom is at a total loss & completely beside herself with my feeling this way. My friends too do not understand what is up with me, I have told noone that I have not been well, but I think my co-workers are catching on. I guess I am hiding it because I don't want there to be anything wrong. I barely function at work these days, and the thought of getting in the shower right now to go to work is just........ Well it's 6:46am, I have to get up & go. Leaving work early to go to Rheumy appt, hope I get some answers.
Take care.
Love, Sandygirl

AngelicBrat

Hey Gina,

The "spiderwoman" look to your legs is called livedo reticulitis and totally goes with APS. It is caused from circulation problems. I can't remember if you were tested for APS? It doesn't matter if the blood work is positive or negative.. I really think that with your symptoms you would feel like a new woman with warfarin (a blood thinner). You sound identical to me.. its like looking in a mirror! I felt exactly how you do.. just in a fog and not wanting to do anything. And on top of that, its the headaches and migraines that are killer! I think that you need your blood thinned out before something dreadful happens.. your body is rebelling! My tests for APS have never been positive but I definitely have it. My Rheumy (the good one from England) put me on the blood thinners to see if they helped. And that is how he confirms the diagnosis! Being on the blood thinners has seriously given me my life back in that way. Its my Lupus symptoms that are kicking my butt. I am just so darn tired and sick feeling. It will all get better in time I am sure! I would get to your doctor to see what they can do for you. Perhaps your GP can treat you with the warfarin to see if it works? If you want me to write your doc a letter let me know. I can give him/her an idea of what having APS does to us. Take care XO

Hey ya SandyGrl!

I am not feeling better because only half the battle has been treated for me. I have yet to be treated for my Lupus symptoms! The APS is stable right now, I have no new clots forming and I can think straight. I think you commented in another forum that you would not be able to tell that I am sick because of my writing. You should read some of my old posts from before I was treated! "Thay loked like this forgot words all time." That was me with the APS untreated. The aspirin will help, but with your symptoms you have to get your blood completely thinned out to feel like a new person. I would ask that Rheumy to test you just to make sure he isn't missing it. The test takes about a week or 2 to come back I think (depends on where you live). If it is negative, that does not matter because it can be negative in us but we still have it. If you have a good rheumy, they will look at the whole picture (including symptoms, MRI's etc) rather than just blood work. And if you do have one that just looks at blood work you don't need him! Anyway, I am praying that you are tested for it! I better run here- I must shower because I look like a wildabeast LOL Talk to you both later

~Love, Angelic (Dana)