Ok, just having a bad day : Hi, I'm not one for... - LUPUS UK


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Ok, just having a bad day

Anyac81 profile image

Hi, I'm not one for emotional outbursts but it's all getting too much, I will apologise in advance

I started having breathing difficulties and feeling pretty poorly with it on 8th march, seen my doctor three times so far, because of dizziness and not being able to breath, fell down the stairs and fractured my toe and badly bruised my arm, collapsed a second time in my lounge, my 10 year old had to call someone to help and watch my 3 year old :( on the second time my gp did a finger prick test called a d-dimer, it came up positive and she was convinced I had a PE , sent to hospital, chest x ray, vq scan all clear, still positive blood test for PE signs though.. but they sent me home and said maybe it's a auto immune thing and wait to see your rheumatologis! I don't see him until May 16th, still feel so ill :( can't make it up the stairs in one go, it's not asthma, pumps don't help it at all, no infection etc but I couldn't even stand and cook my family's dinner today, I had to sit down, the sensation is a blocked/heavy feeling deep in my chest with dizziness and shortness of breath, pretty serious and scary **** to be honest and I just feel ill, no other way to put it. Is there anything to do with lupus/autoimmune issue that could be causing this that a chest X-ray/scan won't show? Sorry to ramble, I just feel like my OT is the only person that really seems to want to help but it's not her area really, shouldn't my doctor be helping me be able to breath?!? Rather than 'oh well you don't have a blood clot we can see so run along and get on with it!' I want to be well enough to take my kids out, to the park even at least and I can't, I'm only 35 and feeling about 85, sorry rant over for now, just think something is definitely being missed, SCLE doesn't cause all this that I know of? x

11 Replies

I would phone your rheumatologist nurse advice line if they have one, or your consultants secretary and explain the situation and ask if you can be seen sooner. Not a lot you can do until Monday on that front. A positive d-dimer does not necessarily mean you have a clot but indicates a risk value to be further investigated. If you've been collapsing have they scanned your brain?

If poorly over w/e, follow your instincts and call 111 and ask to speak to an out of hours doctor or pitch up at A&E if you're really worried.

Do take care and have a low threshold for seeking further advice. Have you ever been tested for apl ?

I really hope they get you feeling better again soon, whichever way you go. 💐

mirren profile image
mirren in reply to Rubylu

Ruby means APS if you are googling it. Antiphospholipid syndrome.

Anyac81 profile image
Anyac81 in reply to mirren

Thank you, yes I was trying to look that up :) x

Rubylu profile image
Rubylu in reply to mirren

Thanks. Predictive txt! Well spotted.

A memory was jogged as you mention it, they said they have to process my blood tests quickly because they congeal quite fast? They used a more medical term lol x

Hi Anyac.... I have a terrible time with breathing often. Some days I am ok, most days I have to put my arms up over my head to take a deep breath. Bloodwork all shows nothing. I did not get a chest xray because i asked the dr would it show inflammation, and he said no

I think it is inflammation because phlegm comes up occcasionally out of my lungs. I drink an anti inflammatory tea when its bad. Not sure if it helps.

I am also working on lowering my cholesterol, which is high, to see if this will help my breathing. Does your OT think it could be cholestrol? Do you have high cholesterol? (I also showed high CO2 in my blood once. Which would indicate my breathing troubles. Which then In turn would not make me feel very good.)

Sometimes I get chest pressure. (I am taking niacin, vit b3 to reduce cholesterol. Need to get approval from a dr to do this. I take a low dose. Just started, and trying to exercise daily). When i get tired or out of breath, i rest.

Hope you can get some help. Keep looking for answers, and solutions.

D-dimmer isn't only a test for a PE or DVT. It can be positive or elevated for many reasons including pregnancy, infection, cancer and inflammation. (I'm not suggesting you have cancer). You do however sound textbook pericarditis. In my opinion, you need an ecg and echo pronto. A d-dimmer can be elevated with inflammation and the symptoms of heaviness in your chest, collapse, shortness of breath all fit. Don't wait to see your rheumatologist nurse. Seek advice from an out of hours GP tomorrow if you can, if you think you need A&E then you DO need A&E. Failing that get an emergency appointment with a GP on Monday. You can't go around collapsing with chest pain and it not be invested throughly. Especially if you have children to think about.

I do my best to never give out medical advice on this forum, more my share experience. But if it is inflammation in your pericardium or chest cavity (serositis) then you need treatment otherwise you may land up with long term problems.

I write this from a hospital bed and cardiac monitor. Just been admitted with pericarditis for the third year running....at least I'm consistent!

Good luck and feel better soon x

Look up the symptoms of pericarditis and serositis and see what you think.

Rubylu profile image
Rubylu in reply to happytulip

Get well yourself too. How horrid.

Anyac81 profile image
Anyac81 in reply to happytulip

Thank you for all the info, I hope you feel better soon though :/ x

Hi, my dad mentioned pericarditis funnily enough, there are just so many things it could be that they don't seem to want to investigate, cost perhaps? I'm definitely not pregnant, hubby had snip ;) lol

My cholesterol is 5.1, a little over what it should be I think? I have a doctors appointment finally, trying to get past the receptionist and explain why I needed an urgent appointment was interesting! x

happytulip profile image
happytulip in reply to Anyac81

Glad you are getting seen by the doctor. If you struggle to get past a receptionist in the future I always find the question, "are you trained to medically telephone triage?" always helps. Its a bit of a snooty thing to ask but generally ensures you get an appointment which is the priority! Good luck, I really hope they get to the bottom of it.

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