Hughes and Fibromyalgia

Hi I have been just Dx with Hughes and fibro, I dx myself with the fibro yrs ago. I'm a CNA and now an MA in the medical field for about 25yrs. Which makes me a total pain with Dr. and my questions but No one really seems to know much about Hughes, my rhum. Dr said some people have pain with this, that mostly it is fibro. causing the pain. That pain basically is rear with Huges. Have any of y'all been told this?

11 Replies

  • Hi where are you located? Who is looking after your Hughes Syndrome/APS? It is very important that you have a doctor or consultant who understands the disease. Also with Hughes Syndrome/APS it is common to have Sjogrens Disease and also Thyroid problems which at times get classified as 'Fibro' This is partly down to the unreliable nature of the TSH test and the over reliance of this rather than also listening to the patient regarding obvious symptoms. Hughes Syndrome can cause awful pain if not treated adequately, Sjogrens Disease does not help with this either, and and untreated Thyroid will cause all manner of problems. On top of this it is important also to look at your levels of Vitamin D, B12 and iron, (Ferritin). MaryF

  • Hi

    I fully agree with my colleague Mary.

    Best wishes.


  • I know Dr. Hughes has written that a lot of fibro is misdiagnosed Hughes. I also have read that many people with fibro have low titers of cardiolipins, but apparently only Dr. Hughes has put 2 and 2 together.

    I also used to by a nurse's aide and then did some health journalism, so I know what it is like to be a self-diagnosing pain to doctors. But I'm pretty much right. When you have mysterious versions of things like ANA negative lupus and I'm pretty sure seronegative APS which they don't believe in in the States, I just can't wait around for years and suffer without trying to find out what is wrong with me, and if there is anything anywhere to help. Fortunately, for most of my life my doctors sort of appreciated where I was coming from and didn't feel intimidated. They were really good doctors. My luck ran out when they stopped taking insurance.

    Good luck. Are you on blood thinners. That would be the way to find out. I found out some years ago that my fibro disappeared when I took 20 mg of prednisone--not fibro.

  • Thanks Mary. I went to an endo 2 wks ago, and to my surprise, I persuaded her to double my dose of synthroid. I've been on plaquenil for a year and half and haven't had as good of a response as I had before, so I'm hoping this may help with the brain fog and fatigue. It would be a wonderful bonus if it helped with pain, too! I think it takes some time to saturate your tissues.

  • and some people do better with the natural desiccated thyroid preparations which I understand is easier to get hold of in the USA. MaryF

  • I had to do some fast talking just to get this, since I was barely in range. So I'm just hoping this will help with my fatigue and hopefully my foggy brain.

  • Hi,

    I was told that I have fibro, or what they referred to as myofascial pain syndrome because my pain is from the waist down and not throughout my entire body which would be typical of fibro.

    I'm not sure if I was given that diagnosis just because they couldn't figure out why I have so much pain. I have a positive ANA and was positive for one of the tests for Hughes but my rheum said that it would not be causing my pain.

    I'm still trying to figure out if the two are related or its just a coincidence that I have both things at once.

    Where exactly is your pain? I get it mostly in my legs, hips/pelvis, and low back.

  • My pain is in similar regions to bassetpup. Hips, knees, ankles, lower back. I know I have arthritis in lower back but not sure of cause of other pain. I'm on warfarin but it hasn't relieved any symptoms...

  • It's awful not knowing what the cause of the pain is. I've noticed lately my knees have also started bothering me. I hope we all get answers soon.

  • Let's hope! xxx

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