My Story, I'm new here!

Hello Everyone! So here's my little story with APS. When I was 10 years old I started to get Raynaud's Syndrome and it was painful at 1st, but I eventually got sort of use to the pain and the purple/grey/blue/red-swelling toes. It was always worse during the winter. I'm 21 now and I always thought it was just Raynaud's I'd have to live with for the rest of my life. It wasn't until about 3 years ago that the Raynaud's was just unbearable for me, I was sensitive to the slightest change in weather when it was cold. I also noticed that about three years ago I would get awfully sick on airplanes. I would feel so lethargic and I'd throw up constantly, even if I didn't eat anything, which was strange because I go on planes all the time ever since I was little and those symptoms didn't start to happen until 3 years ago. Last year, the Raynaud's started to get to my hands and fingers (the Raynaud's only affected my feet and toes at 1st when I was 10). and the pain was extremely unbearable. I couldn't even write for more than 1 hour without my fingers and hands being in extreme pain, I couldn't even cut cold fruit like a mango without my hands hurting. Walking or running with Raynaud's was more painful as well. I finally went to the doctors because I knew this couldn't just be Raynaud's and I have taken the two blood tests so far showing positive for APS/sticky blood-hughes syndrome. I havent had any blood clots or strokes yet, so Im on gabapentin and aspirin (one a day) now. I'm getting random red spots on my skin from time to time like at least once a month and have livedo reticularis on my knees and thighs most times. I'm just surprised I have this because I've been on this forum and other APS forums and I can't find a lot of people who have it around my age. So that's my story:) Hopefully I can interact with some of you on here and ask for some advice

9 Replies

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  • Hi there and welcome, and there are plenty of people on this forum who are around your age, can you tell me where you are located, as this will help you and your GP to have the right specialist! We have a list if in the UK. The random red spots may be Petachiae, and Livedo Reticularis can come and go. You may need more than just Aspirin. All my children have Hughes Syndrome/APS. My eldest mildly, and with a Thyroid problem, my other two both have Hughes Syndrome and one also has Lupus. Thank you for taking the trouble to write out your history so far, very interesting! MaryF

  • Hi! :) And thank you for your words too! I live in California and I'm seeing a rheumatologist at the moment. My paternal side of the family has a lot of autoimmune problems everyone has psoriasis and rheumatoid arthritis on his side of the family and I have a small amount of it (psoriasis) too on my elbows every now and then. My rheumatoid factor was also kinda high on my blood tests as well.

  • We have a few members out that way I am sure they will make recommendations for you and say hello. MaryF

  • Id recommend that you see not just a Rheumatologist but one that is an expert in Hughes Syndrome. If you do need something stronger than Aspirin then you are unlikely to get it with a general Rheumy.

  • Thank you ill take your advice into consideration truly :)

  • Welcome aboard, I'm in NJ... it is hard to find an APS Specialist here in the states but not impossible. Hopefully others will come along from near where you are in Calif. What part of California are you from?

  • orange county area :) and thanks for all the words!

  • Just a thought -- since your symptoms started at a very young age, might they be the result of a good sensitivity? Like gluten? Or some high histamine food? There is now a lot of info and data out there correlating diet issues with chronic diseases like APLS.

  • Dr Daniel Wallace is the California Guru in APS- Hollywood.

    Long wait i think...

    He is rheumatologist.

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