Feeling frustrated

I'm 22 and APS is consuming my life. When I was first diagnosed I really tried to just go on with my life and be young, like nothing was wrong. But it seems like everyday there is a new challenge and I feel so defeated. I have a great support system: between my friends and my family. Yet, sometimes I feel like they just don't know how I'm feeling mentally or physically. As of late I'm feeling like I'm being surpassed by my peers who are falling in love, starting great careers, or traveling around the world.

With that being said, I am so beyond thankful that this support group is here. I have found a place where I can find unity and compassion from people who know exactly what I am feeling. Thank you for listening, just by writing this post I feel much better.

30 Replies

  • I do feel for you. How were you diagnosed? Are you adequately anticoagulated? I found(and still do!) that if I am on target life isn't too bad. Please keep courage. I found that by focusing on raising awareness I had a new lease of life. Keep posting. The forum was my lifeline too when I started. Anyone else near you with APS? I got so much support from my group.

    Good luck with it all.

    Blessings Ann

  • I was being sent in circles from Doctor to doctor because I was having horrible stomach pain which started in college in 2012. I was told it was IBS, and then the pain was so bad for like 6 months that I was only able to eat rice. So after being all too persistent with the doctors I finally saw my current GI and I am so thankful for him. He was the only Doctor to take my blood and run tests. He really went to bat for me. He found that my platelets were really low and was concerned so he wanted more tests. Then he sent me to the hematologist and they thought it was leukemia which was horrifying; but after more testing I was diagnosed with APS.

    I haven't met anyone near me with APS.

    Thank you for your encouragment.

  • Hi there, sorry thing feel so difficult, it is important that the whole picture is looked at, beyond anticoagulation, are you on Plaquenil or anything like that? Also have your levels of B12, D and iron been checked lately as if any of these are low you will feel worse including probably feeling a bit low also, Another angle is your Thyroid that can be very problematic especially if it is under performing. I hope we can all help you feel a bit better along the way. MaryF

  • I'm taking Plaquenil and that has helped tremendously with my joint pain. It has been a lifesaver. I have an appointment with my Rheumy next week, so I should have more blood work done and will know more then.

  • Most normally check Iron, B12 and D, but still does not hurt to remind them, thyroid wise, unfortunately they only do the TSH which is not a very reliable test, so I do more extensive ones privately, but only worth doing if if you actually suspect you have a slow thyroid, I enclose the symptoms, which of course can over lap with other things. thyroiduk.org.uk/tuk/about_...

    I hope you feel better soon. MaryF

  • I'll be sure to bring that up in my next appointment. Thank you

  • Hi and welcome

    I agree with what my colleague, Mary, has advised.

    Who is managing your APS care?

    What are your symptoms?

    What medication are you on?


  • I have a team of really amazing doctors. I am incredibly thankful for My hematologist because he is so knowledgable about APS when I was doing research when I was first diagnosed I was under the impression that most doctors didn't have the slightest clue about what it was.

  • Thanks. A lot of doctors are not very knowledgeable about APS, we find.

  • I wish my APS had been diagnosed at a young age ( I was 68) my medical history wouldn't be quite so cumbersome now😊 Life will be so much better with a diagnosis found early. It is difficult to explain when you are struggling sometimes and people say "you look so well" Enjoy your life x

  • Yes! I have gotten that so much from my friends especially. They say "Wow, but you look so good." My only response is "Thanks? I guess." I want so badly for more people to be educated on invisible illnesses just because we don't "look sick" doesn't mean that we aren't among many other warriors who fight everyday.

    Thank you for your reply, hope all is well.

  • I like been called a "warrior"😊 As so many of us are out there struggling to get some "normality" and function with whatever we feel like on days when one is not "up to par"

  • I love it too! It gives oneself a feeling that even though I am sick, I am going to face this battle and fight on.

  • Hi and welcome to this friendly site where we try to help eachother!

    In short I suggest you look for the best Doctor you can find who really knows what APS/Sticky Blood is, a Specialist. There are very few of them!!

    This is very important and also to as soon as possible be anticoagulated with a drug that thin your blood at a rather high level of INR (if you use Warfarin but there are other drugs also).

    Those two things (a Specialist and thinning the blood to avoid any form of microclots or stroke or embolies) are the 2 things you must do and also read as much as you can about APS, as knowledge is power.

    Good Luck

    Kerstin in Stockholm

  • I have been doing so much research since my diagnosis. You're right knowledge is power :D. I have been on Plaquenil and it has helped so much with my joints. I used to have such a hard time walking or doing anything with my hands. Now I am taking all of the precautions about my eyesight due to what Plaquenil could potentially do to my eyes.

  • Where are you? I know quite a few people around from when I ran my group. It was great linking with others. Ann

  • I live in Colorado.

  • Hey, I live in Colorado too! :)

  • Very cool!!

  • I also live in Colorado!

  • I LOVE Colorado! My sister lives in Boulder and my boyfriend and I are planning a move in the near future. I'm in Southern California right now and am kinda flying solo with my diagnosis.

    I started having symptoms when I was around 30, vague stuff like headaches, fogginess, muscle/joint pain, IBS, fatigue, insomnia, etc. Over the course of 8+ years and two different states I saw every specialist under the son and every alternative treatment. Spent THOUSANDS out of pocket. I was positive for a viral infection (cytomegalovirus) in 2008 which can cause a mono type syndrome and my ANA was mildly elevated. Basically I was told I had depression, but I KNEW something was going on in my body.

    Fast forward to 2013 and I'm working with an awesome primary, she does naturopathic medicine and is super open minded and willing to do a lot for me based on my research. I was tested for vitals and autoimmune- again positive for this cytomegalovirus and elevated ANA. Went and saw a rheumatologist who ran additional tests and that's when I got the APS diagnosis. He, unfortunately, thinks it was an incidental finding and told me to take a baby aspirin. Imagine my surprise when after 3 days I felt CURED!!

    I did some research and came across the Hughes website. My dr helped me with blood thinning supplements and I did a year of antivirals.

    I continued to get tested and despite everything I STILL test positive for this virus. My dr contacted an immunologist at UCI Irvine who was basically stumped.

    I'm actually at the lab right now getting tested again after starting a bunch of antiviral/immune stuff.

    I can tell you this. Once I started the blood thinners I have periods when I feel almost normal! But then I relapse and feel crappy again.

    I haven't been able to work full time since 2013 and I have an HMO crap plan so the only rheumatologist available in my network is the ding dong I already saw. I would have to pay out of pocket for a visit but I don't know anyone who is familiar with non clotting APS.

    Geez! What a ramble! What was my point? Hmmmm. I guess I want to say that I completely know what you are feeling. I have felt surpassed by my peers forever. I'm turning 42, have never married, no kids, no education, no career, never owned a home, gone on vacation, etc. I don't have anyone else you feels the way I do so my social circle is small.

    BUT... For me, and for you, the best is still yet to come. I would much rather have hope and promise for the future than have already peaked! You sound like a tough cookie, and this is a great place for advice and support. And that you have supportive doctors is awesome!!!

    I'm not sure if you are able to work or go to school, but there are options for flexible jobs and online schooling so you can pace yourself but still move forward.

    Much love to you,


  • Wow! That is quite the journey, thank you for sharing with me. I've had a couple of jobs but I had to walk away from a lot of them because I couldn't stand on my feet for too long and was in so much pain that I would be at work crying. I am so lucky to have a family that helps me financially and so thankful for the insurance that I have. But I don't want to have to depend on my family forever. I'm almost finished with my bachelor's degree and would love to become a 1st grade teacher some day.

    Thank you for the encouraging words. Well wishes to you.

  • That is so great! And don't sweat things, you are only 22 and almost have your degree!!! Are you on any blood thinners? Even baby aspirin might be beneficial- maybe talk with your dr.

    Where are you at in CO?

  • Yeah, I'm on baby aspirin and Plaquenil. I'm based in Lakewood.

  • Ha! We were looking at places in Lakewood! Have good friends you live there. Maybe your doctor can adjust your meds and maybe play around with blood thinners to help you feel even better. For me, even this is the best I feel, 50% feeling good is better than before. And ME knowing that I have a medical reason and am not just "making it up" somehow makes me feel better. It's not about anyone else. If your friends or family give you a hard time, they aren't worth YOUR time.

  • What a small world lol

    And thank you for the suggestions and kind, encouraging words!

  • Hi

    from London...

    it is amazing to me that the reach of APS knows no borders... and that we can all relate to our emotions from across the ocean and support each other.

    APS can often make you feel like your life trajectory has been taken from you, but with your degree you could teach, even if part-time as I do. Last year I did 4 days a week teaching and became really unwell. Prior to that I had maintained 2 days a week teaching work for @ 5 years and managed to keep sort of stable except intermittent flare ups.

    Psychologically, it is a demanding illness, you do have to be strong to make a path for yourself and learn to accept limitations. A lot of people have things to deal with and I always remind myself of this, so I know I am not the only person struggling.

    Good luck with it all.

  • Any of the Colorado people have an APS specialist? None of the doctors we have seen in Colorado have a clue!!

  • Hi Apswife,

    Try to put your own new question on here as you will get more answers. Also tell a little about your husband.

    Kerstin in Stockholm

  • I don't have an APS specialist but my hematologist is the next best thing, at least for me. Do you have a hematologist?

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