TorturedSoul Posted March 11, 2021 Report Share Posted March 11, 2021 Hey everyone. I know I've been posting like crazy, but my symptoms are all over the place. I hate this "disease" I'm still waiting on results from the same basic autonomic testing, but I have this feeling in my abdomen that when I try to explain it everyone looks at me like I've lost me mind. It literally feels like I'm bleeding out in my abdomen. I don't know if it's a rush feeling or a draining feeling but it leaves me feeling weak in my limbs and lightheaded. My stomach is also swollen. They did a full body CT scan. It can't be "bleeding" Bc my hemoglobin was always normal but it sure feels like that. I don't think I pool in my legs. They don't really change color. Maybe my feet get a little red in the shower. I wonder though if there is some sort of bleeding taking place Bc my d-dimer is frequently elevated and when they try to give me heparin as a precaution my hemoglobin goes down so they have to stop. They are puzzled with this happens. The first "crash" years ago I had ache behind my left shoulder blade and elevated d dimer. Ct scan showed nothing. This time similar occurrence. High heart rate and short of breath. Pain behind shoulder blade and elevated d-dimer. Nothing. In fact they did head CT and abdominal to see if they could figure out anything. Nothing. It's been so lonely. I feel like I'm falling through the medical cracks. My kids are showing similar symptoms so now that is my sole purpose of living. To fight for them and maybe try to get some health Bc if it weren't for them I'd give up Bc I'm not living. Anyway if anyone has any insight into this sensation please help. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 11, 2021 Report Share Posted March 11, 2021 @TorturedSoul - I am sorry you are feeling so alone. I know what it is like to see the docs scratch their heads over our symptoms but nothing shows up. Unfortunately the symptoms you are describing in this post don't seem related to POTS, so I am not sure if this forum can be of help. Just hang in there, I know you have an upcoming appointment with specialists for your children, so hopefully they can help. Best wishes! Quote Link to comment Share on other sites More sharing options...
TorturedSoul Posted March 11, 2021 Author Report Share Posted March 11, 2021 I read that that sensation in the abdomen that causes weakness could actually be blood pooling? Also, I definitely have POtS as my heart rate increases by at least 30 bpm when standing and my daughter showed a 40 bpm increase (she is 9) both were done in doctors office so we didn't get TTT. Just thought maybe the sensation could be dysautonomia too. Where blood pools and there's not enough flowing to arms and legs so you feel weak. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 11, 2021 Report Share Posted March 11, 2021 Have you tried compression garments or even Spanx? This forum us a helpful place to vent and discuss your symptoms. Normal people will not understand. I don’t even bother anymore. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 11, 2021 Report Share Posted March 11, 2021 When I get iv saline infusions (that do help a lot), most of the fluid builds up in my abdomen. I tried a stomach binder and it was like wearing a corset. So I'm going to look into something else. I don't know about the other things you mentioned. You you check into what you're eating b/c there are a lot of blood vessels in the stomach. Quote Link to comment Share on other sites More sharing options...
TorturedSoul Posted March 11, 2021 Author Report Share Posted March 11, 2021 Thank you everyone. Honestly, anything that makes my stomach constrict makes me feel sick. I remember going to a wedding a few years ago. I had sudden stomach pain. A burning feeling that just progressively got worse. I started feeling very ill and so weak. I laid on the floor. I was taken to the ER, but they were so busy it was hours before anyone could see me. I used the bathroom finally and felt a little better so I went home. I often wonder if it was some sort of ischemia or something caused by the stockings I was wearing. I also had a weird episode when I suddenly bent down to put something in my bottom kitchen cabinet (vomiting and nausea). So who knows anymore. Thank you everyone for your responses Quote Link to comment Share on other sites More sharing options...
yogini Posted March 14, 2021 Report Share Posted March 14, 2021 On 3/11/2021 at 3:39 PM, TorturedSoul said: Thank you everyone. Honestly, anything that makes my stomach constrict makes me feel sick. I remember going to a wedding a few years ago. I had sudden stomach pain. A burning feeling that just progressively got worse. I started feeling very ill and so weak. I laid on the floor. I was taken to the ER, but they were so busy it was hours before anyone could see me. I used the bathroom finally and felt a little better so I went home. I often wonder if it was some sort of ischemia or something caused by the stockings I was wearing. I also had a weird episode when I suddenly bent down to put something in my bottom kitchen cabinet (vomiting and nausea). So who knows anymore. Thank you everyone for your responses Same here, I can’t wear abdominal binders and get uncomfortable even with panty hose. Pooling isn’t bleeding. It’s blood collecting in the blood vessels in parts of your body below your heart. You can lie down to make it go away, so that your whole body is level with your heart. Increasing your blood volume by drinking lots of salt and water tends to help with pooling. Quote Link to comment Share on other sites More sharing options...
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