Newly Diagnosed

I am 51 and have had 2 blood clots in the past 3 weeks. I am on Arixtra injections daily for at least 3 months. I was just diagnosed with Primary Antiphospholipid Syndrome. I already have Fibromylagia and Chronic Fatigue so the brain fog and fatigue is nothing new for me. Any advice from those who have had this longer?

[Hidden]

I think for most getting the diagnosis is the hard part and then tweaking your meds to suit you and your symptoms follow on. If you have good GP/hospital support then you've got it made!!!

I can only suggest pacing yourself in terms of managing your fatigue but sounds as though you have already been doing that for some time. I am sure there are plenty of good admin /peeps on here who can come up with some bonus suggestions.

[Hidden in reply to Hidden]

Thank you. I have been extra fatigued if I do anything. To the point of feeling sick. Is that from Hughes? I go to the doc tomorrow and have a few questions for him. It wasn't explained to me very well in the hospital.

[SueLovett]

Hello,

Pleased you have got a diagnosis and are now being treated.

You may find that now your blood is being thinned some of of your symptoms will improve. Most of us find the awful brain fog improves.

Welcome to the forum please keep in touch.

X

[Hidden in reply to SueLovett]

The brain fog hasn't been the worse thing. It has been the extreme fatigue when I try to do anything. Not sure if that is from the Hughes or just recovering from the clots.

[Jane-Martin in reply to Hidden]

Extreme fatigue is a huge problem. Once your condition is under control, you might find it a lot easier.

[Hidden in reply to Jane-Martin]

Thank you! I sure hope so. I think that's the hardest thing for me to deal with right now. Just glad I don't have to work.

[MaryF Administrator]

Hi there and welcome, just be aware that your fibro is very likely to be a Thyroid problems as it often comes along with APS as well as Sjogrens DIsease, worth looking into. Mary F x

[Hidden in reply to MaryF]

I have had my thyroid checked but have wondered if I do have Sjogrens Disease before, as I have the symptoms. Thanks for your input.

[Manofmendip]

Hi Gibby and welcome.

Indeed getting the diagnosis is often the hardest part, so that is a hurdle overcome.

Where are you from and who is managing your APS?

Best wishes.

Dave

[Hidden in reply to Manofmendip]

My hematologist is handling the APS. I go to see him tomorrow for the first time since being released from the hospital.

[TJSTICKYBLOOD]

Congratulations on getting a firm diagnosis, once you know what you are dealing with you are half way there. Hopefully with medication tweaks you can get it to a manageable state and hopefully at the minimum at least no clots. For the fatigue as other say pace yourself and don't be harsh on yourself if your tired give into it and rest.

[Hidden in reply to TJSTICKYBLOOD]

Thanks. I can't take Coumadin. I got the 2nd clot while on it even though my INR was a little high. Said my body doesn't metabolize it. So, not sure what they will put me on after they let me go off the injections. I know I have to take them for at least 3 months.

[Suzypawz]

Glad you had quite a prompt diagnosis.....this can be a huge struggle for most of us Hughies......

Any questions feel free to put them forward so we can hopefully answer them, So you already have Fibromylagia and Chronic Fatigue...yes you already experience the tiredness, joint pains & foggy headedness then

Where are you from?

[Hidden in reply to Suzypawz]

I am from Frankfort, Indiana. Are the majority of people here from the states or over seas? I appreciate all the replies on here and the kindness from everyone.

[MaryF Administrator in reply to Hidden]

Mainly from the UK, but people from all over the world, our charity based in London. Mary F x

[Tiggercat]

Welcome to the forum Gibby.

I am from NZ and my husband has primary APS and also primary Adrenal Insufficiency.

Since your clots, have they checked your adrenals? Maybe the CF has become worse because you are fighting to recover from your Clots.

I know that, with both conditions my husband has, some days/weeks he finds it almost impossible to to anything other than work because he gets the fatigue from both sides.

Just a thought. You will find a wealth of knowledge from members here.

Again, welcome.

[Hidden]

They haven't done anything since the clots. I have my first doctor's appointment with my hematologist this afternoon. I am hoping is able to answer some questions for me. So far no recurring clots so that's good.

[Hidden in reply to Hidden]

Hello. How did you get on yesterday?

[Hidden in reply to Hidden]

It was depressing. I told him how my leg still hurts quite a bit when I do anything. Was told it would take a long time for that to stop because of the size of the clot. Then I told him how even going to the grocery store exhausts me to the point of feeling sick and was told that is due to the IPS. Then he informs me he is really concerned about ever taking me off the Arixtra injections because Coumadin doesn't work on me. I can't afford $1200 for 10 injections after my free 3 month supply. Just wanted something to have a "quick fix" I guess and it didn't happen. But, I keep telling myself it could be much worse. Thank you so much for asking. I really do appreciate it.

[Hidden]

Thank you so much for your kind words and the information. I'm glad to hear that the fatigue will get easier. That's the main thing that is the hardest for me. I haven't heard of Plaquenil. I will print out the info and take him to him on my next appointment. Thank you again.

[Lure2]

Hi Gibby4

I am glad you have fond this website and I know after a couple of years that the administrators are very kind and know this illness very well indeed. I am from Stockholm and here we have no person to ask but I have bougt books from the Hughes Syndrome Foundation that are reallly very good!

Hope you will keep Contact with this website and us. I say Wellcome from me in Stockholm!

Kersitn

[Hidden in reply to Lure2]

Thank you so much! I love this site and the fact that everyone is so nice and supportive. I will have to go look at the website and check out the books.

[medsoph]

Hi,

Congratulations on your diagnosis and welcome to the site Fingers crossed for improvement in your symptoms.

Soph x

[Hidden in reply to medsoph]

Thank you so much. I just don't see how anyone can function with this extreme fatigue. I thought Fibromyalgia was bad. This is tons worse. Just hoping for the best.