Wondering how common these symptoms are

Hi Everyone,

I posted a few weeks ago that I received my second positive test for APS and I have not had any events such as blood clots, miscarriages, etc.

The reason I even went through all this testing to begin with was that for the last 3 years I've had extreme back, pelvic, and leg pain that no one could figure out. I was told it could be a form of fibromyalgia but since it was really only affecting the bottom half of my body it was less likely.

Any way, in the past couple months I've noticed more joint pain, especially in my knees. This pain is new to me as the pain I was previously having was more muscular and in my quads and calves, my low back, and pelvis. The pain I've been feeling in my knees lately is like a shooting pain that sometimes causes me to jerk my leg because it comes out of nowhere and is so intense and sudden. My knees are definitely more sore than usual as well. Could this be related to APS? I was told that the leg, back and pelvic pain was not due to APS.

Right now I'm just taking daily baby aspirin and vitamin D.

Any thoughts on this are appreciated.

19 Replies

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  • Hi and welcome.

    I certainly have leg, back, joint and muscle pains that are associated with APS, according to Prof Hughes himself.

    Dave

  • Well that's actually good to hear (not good that you're in pain) that it could be related to APS.

  • It is not so great for cycling though. :(

  • Yeah that's no fun. I haven't run in over 3 years because of my pain.

  • I used to race bikes but only ride for 'fun' now, when the myalgia is in a good mood.

  • I stick mostly to yoga and walking. Thinking about picking up some light jogging for my "good" days.

  • Some find Plaquenil helps in addition to any anticoagulation or other therapies in place. MaryF

  • Oh that's good to know. What type of medication is that?

  • It is an antimalerial often used to treat Lupus but frequently now used for Hughes Syndrome/APS in terms of the fatigue and pain. MaryF

  • Ok great I will keep it in mind.

  • Hi, I have shooting pains in my pelvis, but it only happens occasionally (a few times a month, I cannot walk for a moment then and it comes very sudden indeed). Also have pain in my knees once a month or so and backpain almost every day. I'm not sure if they are APS related, but in my case obviously both characteristics are there (I'm LA positive).

  • I also have back pain most days that varies from dull to severe and wakes me up in the middle of the night.

    Has your doctor addressed your pain issues at all?

  • I am slightly confused about the lower grade symptoms because both my hemotologist and my rheumatologist have told me there are no other symptoms to aps besides clotting issues

  • I was told the same thing by my rheumatologist. She said my pain would not be coming from APS but it's most likely related to fibro. I'm honestly not convinced I have fibro after reading up on it and hearing from others who have it.

  • I think that's not correct. I believe that clotting is the main symptom, but that there are others, many of which are "minor" (the definition of a minor symptom is apparently "something that doesn't affect you").

  • I just wish more doctors could connect all the symptoms. I've always thought how likely is it that I have this rare autoimmune disorder and also happen to have chronic pain? it just makes way more sense that the two are connected.

  • I think that reading Prof. Hughes' blogs will give you an appreciation of how many symptoms can accompany APS (although clotting issues are undoubtedly the most important).

  • I used to have excruciating pain in my knees, all the time, and when I was pregnant, it was an exercise in torture. I have cut all sugar and many simple carbs from my diet, and I feel like a new woman! Try changing your sugar intake. It's not going to hurt you and may help you a great deal.

  • Thank you for the advice-I will give it a try.

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