P.E.s, what do they feel like.

[mylafont]

What is you feel in your chest when you have one? How often do you feel the pain?

[Toffeedunn123]

Hi it can be different for everyone my experience was I had like a sharp chest and upper back pain when I breathed in, I couldn't talk properly in sentences because I was short of breath I couldn't bend forward without holding my chest if ur in doubt get it checked

[mylafont in reply to Toffeedunn123]

when I first started having the pain, I thought I was having a heart attack. Pain in chest back and down left arm. I'm waiting for my doc to get back to me, nut I was told I have a rare form of APS that is only affecting my brain. I have pains about once a week or so.

[Toffeedunn123 in reply to mylafont]

Chest pain I find is a regular occurrence with APS x

[mylafont]

I don't feel out of breath or that I can't breathe. Just intense pain in my chest area for about 2-3 minutes. I guess it feels like a muscle spasm. I just don't know. It does come and go

[Lure2]

My advise to you is to get an APS-Specialist. We know here how exstremely important it is that the doctor understands what you talk of. Even so it can be difficult to understand APS.

I must say that I have never heard of an APS-patient with a special" brain-APS". Of course APS affects different parts of the body but that is also why you should have a Specialist so he can examine why you have pain in your chest. Neurologists are no specialists of APS. Rheumatologists and Hematologists are.

Do you have had high bloodpressure? That can go with APS and also Pulmonary Hypertension. At least tell a doctor about your chest-pain.

Kerstin

[mylafont in reply to Lure2]

No high blood pressure. Thanks. Mi am waiting to hear back from my rheumatologist. I am just now getting somewhere I am asking much more specific questions.

[MaryF Administrator]

The symptoms vary between patients but most have chest pain and obvious shortness of breath. MaryF

[barb64]

I have had 4 P.E's and with everyone my initial symptom was the feeling of something being stuck in my throat, a bit like if u swallow something and it goes down the wrong way, but everyone will have symptoms individual to them. I am on warfarin but find it erratic, last year I threw off a big PE despite being on it but symptoms were still the same. Good luck

[mylafont]

My rheumatologist wrote me back stating that because of the way "my" Hughes is manifesting in my body, I am much less at risk for a vein clot (legs and lungs) than I am an arterial one. Suggested I see my primary doc for the chest pains. They very well might just be muscle spasms. Since I've been "sick" I don't exercise regularly anymore.

[GinaD]

I have never had a PE, so I have no suggestions as to that except -- when in doubt, go see a doc!

Assuming the pains are muscle spasms -- any chance you could be evaluated by, what here in the US we call, a physical therapist? Bad posture and dysfunctional gait can lead to muscle spasms in the chest, among other things.

In the meantime, you might google "Alexander technique" (or check this website: alexandertechnique.com) for some pointers that may be useful about becoming aware of your posture. I know from experience that once we adapt a bad posture or gait we become totally unaware about how unnatural and debilitating our physical habits have become. We have to consciously evaluate, note and then address any needed changes.

Good luck!

Gina in West Virginia

[mylafont in reply to GinaD]

That makes a lot of sense to me. I am in need of chiropractic care but we recently moved to a new city and have not established myself with one yet.

[spider7]

Either had a sharp pain in my chest and also in my back but I do know of people who did not have much pain but still had clots in the lung. The worst thing was not being able to breath.

[jetjetjet]

In my experience in 2009 -my right lung was a cluster of clots and the left lung had a clot across the bottom over an inch thick i had no pain at all-- no shortness of breath and a oxygen level of 97 %. clots in groin and behind left leg no pain -dis-coloration or heat ??

[bubblybev]

It has been interesting hearing others comments. The shortness of breath is a common feature.

I had a Saddle PE. I had no warning - so no pain from a DVT before hand. I woke up that morning feeling blue for no reason, and I just figured I was just going to have one of those days. By lunch I had a pain in my left side. I figured I had just pulled a muscle but it was actually my left lung collapsing. Early that evening I went out and everyone I saw said I looked really sick (grey in the face) but I still had no idea of what was happening. Later that night my partner rang me and I was trying to talk to him, but I was crying for no reason and trying to breath at the same time and it was just not working. So I decided to go to bed and chill out and compose myself. When I went to bed and laid down everything happened. The pain in my chest was intense and I couldn't breath. When I sat up I could breath a little. I actually thought I was just going mad and I needed to pull myself to together. But I was also frightened and that part of me rang the ambulance. It was that action that saved my life.

Let us know how you go in working out what is causing your pain.

[mylafont in reply to bubblybev]

Someone here mentioned it could be related to my posture or gait being off and they are muscle spasms. I think this is going to be the case. I just haven't made an apt yet with a chiropractor since moving to a new city. I also am not looking forward to 20 or so visits.

[Lure2]

Hallo again,

I have Lupus Anticoagulant like you and jetjetjet is also LA.

He says he has no pain and no brethlessness but they have found a lot of clots. I am never breathless but my Cardiolog always asks me if I am breathless. I do not know of any clots in my lungues but my Cardiolog was suspisious that I might have had clots. It is suposed that I have had a lot of Micro-clots.I do not understand this and I have not bothered to look into it either.

They say I have Pulmonary Hypertension and leaking heartvalves which goes with APS.

My bloodpressure was very high before warfarin but is normal now, but with bloodpressure drugs though. They are also for my heart.

I have had pain in my chest a couple of times. I feel fine most of the time!

I have forgotten if you have got an APS-Specialist. You should have that. I thing you should be remitted to a cardiolog. They can not always find everything (this illness is strange) but they have found my Pulmonary Hypertension on Ecocardiografi with Doppler.

Kerstin

[mylafont in reply to Lure2]

I don't specifically have an APS specialist. I do regularly see a rheumatologist, hematologist via coumadin clinic and a neurologist. Even though they don't always answer my specific questions about some things, I am confident they know how to treat me.

This disease is strange, and I am on warfarin. I am going to seek chiropractic help for the chest and back pain. I did see a cardiologist early on and all was fine back when I thought the pain was heart related.

So far nothing serious has come from the pain. I'm out of shape since getting sick and am working on getting active again.

[mcmom4x4]

I had my first PE in August of 2012. My pain started a week before I went to the hospital. I thought at first that I had indigestion. After trying to treat it and it not working I thought I had just pulled something while playing with the baby. That pain lasted for a week. I couldn't lay on my right side at all. The following week exactly 7 days after the first pain I was feeling better. I woke up that morning with a pain in my side. It felt like I had run a long distance and got a stitch in my side. As the day progressed, so did the pain. At 2:00 am the next morning my son took me to the ER because I felt like I couldn't breathe. At 8:30 they came in and told me that I had a PE and the clot had lodged itself in my lower left lung where it killed the lung tissue. The pain is severe and it is sharp. If you experience anything that is not familiar I would be checked. My clot came from liver where it broke off and traveled to my lung. I was on Warfarin for 6 months. We decided to go off the medicine as I didn't have a diagnosis and they couldn't find anything to explain my PE. My APS test came back negative. Four weeks after going off the medicine I had a sharp pain in my shoulder. I have a friend who is an RN. I called and explained what I was feeling. She told me to go to the ER as she was sure I had another PE. They found 2 clots in my left lung that time and so many in my right lung that they couldn't count. It is not something to mess with. If in doubt get checked out!