Does my pain go away when my blood regimen is on track?

I have horrible body pain and I am 30yrs old with the memory of a 90yr old. This is very scary as I am the mom of 3 little boys. My eldest son had intro uterine growth restriction and now he has severe disabilities. I have put all of my focus into his care and I have to admit I have neglected my own care! I have known for 6yrs that I have Hughes but I have ignored my symptoms. Now my issues are becoming unbearable and I have an appt and I am going to do what I need to do for myself! I have a couple questions though so if anyone can answer them I really appreciate that. First my whole body hurts will blood thinning therapy get rid of my pain and fatigue? If not completely then what kind of pain control regimens are used? Second I live in America and I know Hughes is on the list of excepted disease to get disability but do they give you a hard time? I know this day and age Social Security likes to give people the run around sometimes even for years!

9 Replies

  • hi dawn- getting your inr assessed is 1 st , to manage any clotting problem, the pain and fatigue, it may help ,i think it differs from one person to another, getting the inr done is very important . have you been clinically dia. , if so where was your pt/ inr at that time. what state do you live in ? i live in n.h. and havent heard of any thing yet on aps and disabilty [ lets hope there is ] as this can be different in states. get back to me lets see what we can come up with . welcome to the forum ---------------------jet

  • I have been diagnosed I was 24 at the time. I dont remember my levels though. I have already had 2 clots one in my stomach and the other in my head.all of my moms sideof the family has Hughes 1 uncle lost hos legs and the 2 is about to go through amputation and the 3rd uncle died from Hughes. I live in NC and I knowthat Hughes is on the list of excepted disease with disability because they have a list online. Thx Dawn

  • dawn - being from down there have you had any dealings with duke unn.- i am dealing with them now. they are well respected in the blood research end of things. be interested in hearing from someone so close to them ???????? thanks --jet

  • I fear not-but then I only take warfarin for its anti-coagulant properties. I'm in the UK and I now use Butrans patches (buprenorphine- a strong pain killer related to morphine) and paracetamol for pain. This is on the advice, and under the supervision of a pain clinic. I've previously used other pain killers. They, the pain clinic, also look at treating pain, however caused, in other, non drug ways too eg exercise, pacing and psychology. It rather depends on why you are getting the pain- I don't know how much is arthritis and how much is Hughes or Sjrogens, I just know it has increased over the years and am glad to see a (pain clinic) doctor who recognises that Hughes and Sjogrens can cause pain that needs treatment.

    Can't help with Social Security attitude I'm afraid- though I'm thinking that 'excepted' has the opposite meaning in the UK in the sense you and jetjetjet use it. Neither of them, as far as I am aware, are an accepted disease for UK disability purposes per se, depends on symptoms.

    Good Luck with it.

  • Jet I live an hour from Duke and I have not went to them for my Hughes. I take my son there and I will probably go there now but I went to Baptist Hospital for my issue they are a half hour from me. Have you heard of them? They are just as big as Duke? I take my son to a few doctors there. My Hughes went undiagnosed during my first pregnancy so my son just about died from complications of it. My son now has something more rare than Hughes! He is missing chromosome #17 and he is the 23rd person in the world!!! Due to this he is truly my miracle child from God but he has ( to some degree) suffered his entire life! He has autism, epilepsy, C1Q nephropothy ( kidney disease) among other painful issues. I look up to my son because there were times he cried for 15 hours in pain and yet when he went to bed at night he prayed for everyone but himself!!! So he is my strength he needs me and if I dont get help he might not have me! I am having something weird and scary happen now and I want to know if this is happening to anyone else or if I possibly have another issue. I am having "flair ups" they are late in the evening and I think I am dying in the moment! I can hardly breath and my lungs feel severely bruised I can not cry out for help because I cant speak above a whisper ( even with my hubby in the bed beside me) then My heart starts pounding and I feel like I am having a panic attack then the the most concerning part..... I am completely paralyzed!!! I cant move an inch or cry for help! This has happened for up to 8 hours before! Has anyone else went through this? I am so glad I found you all everyone has been very nice and I have felt all alone because no one around me understands what I go through while trying to raise 3 young boys! Thank you all <3

  • dawn - the reason im doing my blood with them is , they found my clots in lungs,groin,left leg , neck , left arm pit- aug 31- 2009- dia a.p.s.on feb 17 th 2010. went on for 2 years , still lossing eye site,loss of balance numbness and tingling in legs, arms [ i still have this fatigue, run down feeling, and the numbness and tingling] in early nov of 2011, went to see a rheumey, he did massive amount of blood work. he found not only aps but 3 other blood disorders of which he had never heard of in one person. this is why duke is so interested in my blood . after they get my blood they will come back for my brothers and sisters blood to do a genetic profile . my doc in dartmouth [ rheumy] said he doesnt know how i am even fuctioning , o well i am but not to good some times. i have some info an duke and contact people if you would like. just let me know ------jet

  • Yes actually I would luke that info thank you! Have you ever had any episodes like i described?

  • Correction love that info

  • You asked "First my whole body hurts will blood thinning therapy get rid of my pain and fatigue?"

    It depends what is causing them. You could need additional treatments. Blood thinning in itself is not a pain relief.

    If not completely then what kind of pain control regimens are used?

    Again, it depends what is causing the pain. If it is nerve damage, vasculitis or arthritis, or muscle pain. The pain could even be due to muscle spasms or tension.

    Remember we are all different and the condition affects people in many different ways.

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