Does anyone have venous insufficiency, deep vein thrombosis? Is it part of autoimmune disease?

Hi--

Hey Marji,

I don't have any answers for you.  but surely someone else will.  my mother had to wear these support hoses everytime she had to go to the hospital.  I will be glad to see what other people have to say about this topic.

Hester

Thanks Ginny. I have to wear stockings which help when they are on, but then things feel twice as bad when they are off. They are like a tourniquet at the top practically, but were sized for me, they are tight, then fall down becausethey don't go high enough, I have long legs. Now my thighs are killing me and it feels like the problem is further up. I wonder if I will ever get this sorted out right. Any thoughts on better stocking s wopuld be great.

Thanks for the reply.

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Love, Marji

Yes. You should get this sorted out right away. I had two 2 DVTs (one on each leg) and the pain was from my bottom to the back of my thigh. The second clot was up to the thigh (the groin area) already (from ultrasound image). I am on warafin for life. As Ginny says, you may want to check if you have APS also. I have APS. If the DVT is treated, it should not be a problem. I wore those stockings also, but I hated it. It's tight. When you get those stockings, were you being measure (I mean your foot/feet)? They should measure your feet first before they prescribed you the stockings.

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DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg

I have such bad pain, but also have a big spot on my lower spine on my old gallium scan that is really lit up and look like some kind of lesion because it has edges. I hurt so bad now I don't care who does surgery on my back as long as they make it better. they say its a pinched nerve, I wonder if I have may-thurner because my left leg is so much worse than the right. May-Thurner is an condition where the iliac artery pressses on the vein underneath it causing the left leg to swell. There is a fix for that,real simple surgery to place the vein atop the artery and you are much better. It makes sense because all that is where the pinched nerves are and my pelvis is tilted and I have scoliosis there, so I imagine a bunch ofthings are out of place. I just can't get these docs to look at more than one thing. One deals with the nerve, another wth the back, another with veins. Any advice?

I'm pushing for back surgery now, and not just a little laser procedure, but someone getting in there becaue I think its worse than I thought.

I found out that the stockings I have are ambulatory stockings, I also have the compression ones, they did measure me. I put the ambulatory ones on when I lay down, I sleep so much now, don't feel like doing anything. They help and go all the way up and stay up, but I can tell they are not strong enough for the left leg.

The stockings help the pain, but did anyone notice after wearing them that the pain just moves up the thigh to where the stocking isn't?

I too had a clot, in my lung and would highly recommend you ask about blood thinners and being tested for aps. judy

Thanks MJLD. I will pursue this with the doc. I don't know if I've been tested, I think I have anticardiolipin abs, don't know if they are the same. I didn't see APS on there and they checked a ton of stuff. Maybe they missed it. I will ask next month at my appt. I think something pretty serious is going on with my left leg because the pain is so bad the only thing that stops it is a shot of dilaudid (I only had one in the ER). Strong lortabs or ultram don't touch it. I have gone on to aspirin, one baby aspirin per day. The docs here won't give me a regular lupus dx, despite the malar rash, constant high ana, and the presence of a bunch of odd antibodies, though in levels just under "positive", though they do exist. They dx me with sjogrens instead, and I have a constant problem with that dx because non-rheumies think it is just dry eyes. Oh, and then they do every other problem separately, so its like I have a ton of stuff wrong.

Fortunately, I am getting an MRI of eyes and brrain and neck and cat scan of all of that, so maybe they will be abe to tell if I've had past TIAs during my "migraines". I don't know if clots showed up on the dopplers, wouldn't they HAVE to treat them if they did? I would think they'd have to put me on something. Also, oddly, my blood is thick but my sed rate is normal, for once in my life. Now just the CRP is a little abnormal. So if the blood is thick, wouldnt the sed rate HAVE to be high? It doesn't make sense.

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Love, Marji