phebitis

[Stannington-lad]

Hi

Could you please help?

Is Phlebitis associated with Hughes?

[pumpkincake]

Hi Stannington -lad,

Plebitis is most certainly directly associated with Hughes Syndrome.

Phlebitis: Inflammation of a vein. With phlebitis there is infiltration of the walls of the vein and, usually, the formation of a clot (thrombus) in the vein (thrombophlebitis). Phlebitis in a leg, for example, will cause the leg to swell with edema fluid and feel stiff and painful.

I have had DVT and I have had Superficial Phlebitis. The Superficial Phlebitis was in the smaller veins closer to the skin in my legs. It was quite painful on a regular basis. For me back 20+ years ago when I had it, I had vericose veins that were terrible and the superficial phlebitis was directly associated with that. I eventually had to have the veins stripped (removed) because I could not walk without excruciating pain. For me, my saphenous veins caused the problems.

With "sludge blood" or "sticky blood" that we have in Hughes/APS, it is slow moving when not on anticoagulation. I had not be diagnosed with Hughes/APS when I had superficial phlebitis. So with our "sticky blood" and the slow movement of our blood...what happens is small fibrin form and accumulate in the veins. The veins can become weak and damaged and blood can pool up in those areas causing the vericose vein. A clot is made up of fibrin, platelets and blood. Our veins don't have muscles to push the fibrin through...so it is accumulated there. It can become a clot and then turn into a bigger problem.

I hope this helps...I do understand how you feel with this. I hope you and your doctor come up with a good plan that works for you.

Take care,

Beverly

[Lesley_D]

Thank you! You have taught me something ! - I had phlebitis 30 years ago following a queried PE but this was never looked into, it was followed by several months of feinting and headaches, I was told this was unexplained and possibly ... Wait for it, psychological ! 30 years on I was diagnosed with primary APS. smiles to you

Lesley

[pumpkincake in reply to Lesley_D]

Oh Lesley.... I too was told I needed to see a physcologist or therapist when my headaches were TERRIBLE as it had to be "in my head". Three months after that comment I had my first stroke...had severe stenosis of the Circle of Willis that caused alot of issues.

I knew I had terrible ciruclation problems since i was a teenager and after being dx'd with APS 20 years ago it all started to add up. It wasnt until years after that when I started researching everything that had gone on with me throughout the years.

It is very validating for us to know why we felt/feel the way we did/do....that it wasnt in our heads.

Take Care,

Beverly :o)

[SueLovett]

I've been there Lesley,

A GP once asked me 'What has happened in your life to make you so unhappy'?

No wonder Hughes patients suffer from depression when they feel so rotten and all the doctors are suggesting they are imagining it!

As for the phlebitis, my mum suffered very badly from it for years. We now know she had Hughes. Makes sense as the blood is clotting in the legs.

[GinaD]

Phlebitis? So . . . I now have an explanation for why if my thigh muscles are strong as rocks then I have less pain. It's not just the muscles stabilizing the joint, the stronger muscles are helping my damaged varicose veins do their job! Thank you, thank you, thank you.

I knew that following some of my docs' advice for the past 18 months, ("if it hurts, don't do it. Walk less, put your feet up and wait to get better.") was actually making me worse not better. My physical therapist doesn't want to contradict doctors, but he has given me the "its your body, and you know it best" speech a few times in the past couple of months. Now I feel like such a fool. I KNEW all this was APS related. (But my docs knew I was imagining things, or just striving for medical attention.)

A query (which I will also post on the questions as a separate thread: does phlebitis in surface veins show up in an ultrasound?

[Stannington-lad]

Hi to all

Thank you for the information, it has been good reading and informative.

This is the best site ever!!!