Vascular problems since LVSD and heart failure diagnosis, really hoping someone out there can help me.

[Liam-James]

High guys I’m really hoping someone can help me, I wanted to ask a serious question anyone with heart failure/cardiomyopathy and other related issues has it affected your vascular system?

The reason I ask since I was told I had LVSD and heart failure back in January I’ve noticed that the veins in my body started to become more noticeable, I have lost some weight but it can’t all be attributed to having less weight and lower body fat not to this extent. I first noticed I was struggling to bend forward doing simple things like tieing shoe laces, picking up a pen dropped on the floor etc as soon as I did I’d get a massive pressure feeling build up from my chest up into my neck and into my head and the longer I’d stay bent over the worse it would get. The jugular veins in my neck where just popping out absolutely massive like ropes under my skin because of this I tend to squat down for anything as the feeling I get from bending over is horrible, it’s even got to the point I have to use 4 pillows in bed not because of breathing difficulties but because the pressure I feel from the veins popping out the flatter I am I need to be propped up as though the blood isn’t flowing back and forth properly.

Then I noticed my arms had become far more veiny running into my hands, if I have my arms down by my side the veins in my forearms and hands become so full and bulging they’re quite hard like ropes under my skin and the only way they go away is to elevate my arms. Then I started to notice my legs which I’ve never noticed veins before have become veiny also, behind the back of my knees I have a thick vein which feels abit lumpy that runs down the back of my calf and other veins around my calf’s and shins and I have a massive vein on the inside bone of both my ankles that goes huge the more pressure is applied from sitting or standing.

I’ve mentioned all this to my doctor months ago and it’s as though they couldn’t give a toss and just said wait until you have the result back from your cardiac MRI as they thought that would give me answers. Well I had that back and had better news than expected regarding my heart function so I went back to my GP and basically told them all this and how it’s making me feel, they spoke to me mentioned a few different things like Jugular venous pressure, Thoracic outlet syndrome etc and they would look into everything and would speak to another doctor as to what’s best to do next and get back in touch with me this week regarding my concerns.

I’m getting really worried there’s something seriously wrong with the way blood is being pumped through my body all this seems to have started since the heart failure i never noticed any of this stuff before I just feel like there’s no end to all this crap and that things are only going to get worse one way or another, I feel as though it’s all just going to get worse and worse. I was just wondering if anyone else has experienced anything similar and has any help or advice for me please.

[RufusScamp]

Obviously, we cannot give you a diagnosis. Advice would be follow a good diet, such as the Mediterranean, and get regular, gentle exercise. The BHF nurses have been very helpful for many of us.

[WardijaWardija in reply to RufusScamp]

Hi. I have the same heart conditions as you do, and can definitely relate to the pain in the chest and neck area that you refer to. Although now mine are under control thanks to multiple medications.

I also have an issue with my circulation system, which is linked to my heart issues. So yes, there is a direct causal link.

Cant understand why your GP was so dismissive. . . What you are describing sounds like something that should not be ignored.

If you dont "feel right" I'd definitely seek a further opinion, sooner rather than later.

Do you have a cardio nurse? Or support from the Cardio team at the hospital?

You could also speak to one of the BHF nurses via this site, as they are very knowledgeable and would be able to signpost you in the right direction to get your issue dealt with as appropriate.

I hope you get this sorted out soon. Take care.