Has Anyone Gotten Blod Clots With This?

[sjprice23]

My mother (whom was a nurse for 25 years) just took me to the emergency room because what I described to her of the wierd pain in my leg and the little bit of discoloration sounded like a blood clot.

I do not have that much of a high risk for blood-clotting (maybe blood pooling in my legs could cause one, and my cousin has APS, a blood-clotting disorder that they know could be a genetic disorder, but no doc will test me for it).

They did an ultrasound on my leg, but could not find anything today.

I was told to keep an eye on it, but I was wondering if anyone here has had problems with blood-clots, or if they get pains in their legs in segregated areas that is more centered around veins and not muscle or joint/bone pain?

[futurehope]

I believe that I get blood clots relatively easily since I developed one in a superficial vein after a 4-5 hour airplane ride across the country.

My symptoms were pain and tenderness and a feeling of heat I think. They could see mine on a venous doppler. And I got this even though I wore 30 HG compression hose the entire trip.

I do have a tendency toward varicose veins so maybe that's why the clot formed.

I've also had this about 15 years ago.

For me, its probably related to my varicose veins.

Are you all right now?

[sjprice23]

I still have the pain and tenderness, but I was told to keep an eye on it for the next week for worsening pain, for it to move up my leg, etc. etc. Thanks for asking!

[masumeh]

I still have the pain and tenderness, but I was told to keep an eye on it for the next week for worsening pain, for it to move up my leg, etc. etc. Thanks for asking!

I had a Pulmonary Embolism (PE, clot in the lung) at the beginning of my "crash", when I was bedridden four years ago or so. They did not find any other clots with the dopler. I've seen several hemotologists, and I used to rush to the urgent care any time I had an odd looking bruise w/no memorable cause (bc I was found to have Protien S deficency, one of the anti-clotting agents produced by the liver, there's also Protien C, but I have enough of that, thankfully).

But a hemotologist recently told me to calm down about it, that a serious clot in the leg would be unmistakable, painful, swollen, red. I bruise easily and often do not recall the cause of the bruise. But if you remember what hit you, or what you hit, it's definately not a clot. Another tip, clots in the leg often happen around the upper calf (where many women's hoses squeeze their viens). A bruise there, accompanied by pain and swelling, is more suspicious than a bruise, say, on the top of the knee.

Hopefully, you do not have a clot.

But, for those who do clot, the hemotologists have to put us on blood thinners under several special circumstances, including: pregancy; long travel; surgery; any bedridden illness. But, if you don't have one, you don't want one bc the blood thinners are just annoying (I had to take over 300 shots of Lovenox in my last pregnancy and postpartum).

[sjprice23]

Thanks for more info Masumeh. I'm beginning to think that it might not be a blod clot (bc of course I do not want it to be). It's just been my experience with my mother being a nurse my whole life, she would never freak out or worry about any health concern unless it was something more serious. So, to see her freak out and want to take me to the ER was a little disconcering at the time.

And also, I have followed fairly closely to my cousin's health issues throughout my life (with things in the genes anyway), so to have her have a possible genetic blood-clotting disorder, and me not being able to do too much of moving around these days, kind of had me scared.

The pain is still there, but I don't have any swelling, so I'm not too worried about it right now.

So, again thanks.

[calypso]

There is a woman who posts here rarely, and her name, I think, is Hayley -- and she has had at least two blood clots. You could try sending her a personal message. Having used this board for nearly three years, I would say there haven't been too many here with blood clots, so in my non-medical opinion it's probably not statistically significant in the POTS population any more so than in the general population.

Amy

[OCsunshine]

There was one incident several years ago where I am pretty sure I had a blood clot. Can clots work themselves out without treatment? I don't know much about them, but I remember having bad pains (chest pains, tightness, shortness of breath) and it wasn't the usual NMH problems, it was WEIRD and scary.

This happened after I sat through a 4 1/2 hour play in a theater. I didn't get up for intermission, so my mom is pretty sure I sat too still the whole time and it caused a clot. After a period of the pain (maybe an hour) and some walking around, I started to feel better on my own so I never wound up going for help or treatment.

Now I am very careful about taking 'breaks' to walk around, stretch, move... whether it's in the theater, on an airplane, whatever... I don't want that pain to come back!

[sjprice23]

There was one incident several years ago where I am pretty sure I had a blood clot. Can clots work themselves out without treatment?

Yes, I know it is possible. With my mom being a nurse, this is what she told me after we left the ER. She said this is probably what will happen since they didn't find anything with the doppler. They just dissolve on their own, more often when they are in the lower part of the leg, but they can dissolve on their own anywhere in the body.

[Sunfish]

there isn't anything that would indicate more of a tendency for clots in those with dysautonomia BUT some meds people may be on, less mobility/activity for some, etc. could perhaps be considered mild risk factors for some.

i was hospitalized in august for what ended up being multiple blood clots in my subclavian vein in combination with a localized infection (infection can invite clots & clots can invite infection, so no knowing which came first). it was incredibly painful, caused a lot of inflamation, etc. BUT for me was directly related to my having a Broviac line, a type of central catheter (IV access) that i require for IV nutrition & fluids on a daily basis. the line had to be removed (and replaced with an alternative) and the plan was to be on blood thinning meds for around 6 months. this plan changed this week however when i had a GI bleed....now we're scrapping the blood thinners much sooner b/c it's too risky to have me bleeding that much.

hope you're feeling better,

melissa

[masumeh]

OCsunshing- If you are thinking that you might have experienced a PE (a blood clot in the lung), which is what I got from the breathing trouble description, I can tell you that they do disolve by themselves, just like any other clot, although a large clot might damage the organ (especially if it's a clot in the brain, ie stroke), leaving its effects for years to come. My PE was small (according to my pulmonologist, it "only" knocked out 15% of my right lung). It disolved as he predicted, over 7-10 days. With this very small clot, I was barely able to speak. Of course, with POTS, we have shortness of breath anyways; but the feeling is very different with the PE. It's not painful unless the clot is bigger. I did not have much pain, just a feeling that although I was breathing normally, I was not really breathing....like the air wasn't getting into my body...(indeed, that is exactly what was happening, but only in the area affected by the clot). Anyways....so glad it's over. And if your breathing problem took less than 7 days to resolve, then it was not a PE. Also, pain and difficulty breathing sounds more like a spasm in your diaphram...my sister-in-law has a small hole in her diaphram and she gets some pain that feels like a heart attack w/some referred pain to her arm and back and difficulty breathing....this is from the hole in the diaphram. It could also be heart burn....? Lots of possibilities...best to ask a doctor I think...especially if it happens again.

i was hospitalized in august for what ended up being multiple blood clots in my subclavian vein in combination with a localized infection (infection can invite clots & clots can invite infection, so no knowing which came first). it was incredibly painful, caused a lot of inflamation, etc. BUT for me was directly related to my having a Broviac line, a type of central catheter (IV access) that i require for IV nutrition & fluids on a daily basis. the line had to be removed (and replaced with an alternative) and the plan was to be on blood thinning meds for around 6 months. this plan changed this week however when i had a GI bleed....now we're scrapping the blood thinners much sooner b/c it's too risky to have me bleeding that much.

hope you're feeling better,

melissa

Melissa- I really feel for you. It's terrifying being on blood thinners for just that reason--the possiblity of internal bleeding unchecked that does not stop. It's wonderful that you noticed and were able to safely stop the thinners in time!