Hi all I'm 24.I've had many tests done some over 8+ years ago but was ruled out as musculoskeletal pain, i dont feel i have this pain now. But since then though my breathing has always been an issue feeling as if I'm not able to take a full breath. I've had many tests done but I don't know what it could be. It's not asthma/diabetes. Since a week I've had shoulder/back pain/chest tightness but has gone down now also heart feels as if is racing but also this has got better over a week. Found out this year have deviated septum but i know this OP will help with breathing but i know isn't the only issue.
Edit : My brother is similar age to when i first started getting my symptoms which was ruled out as musculoskeletal pain. My brother is waiting to see Ethers Danlos Syndrome specialists for suspected Vascular EDS, But could be Marfans. Currently they found mild Aortic Root dissection/Mild Mitral valve regurgitation.
Tests done- 8+ years ago MRI, Chest Xray, Bloods, Injected with die under MRI and blood flow wad monitored, Ultrasound. Was ruled out Musculoskeletal pain. Heart monitor 24hrs.
Last year- ECG, 7 day heart monitor, bloods, xrays.
This week- ECG, also blood test results showed signs low folic acid. MRI booked april. Nurse prescribed Lansoprazole if its acid related issue. After having 2-3 days of lanzaprosle found myself coughing up white foamy mucus.
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Could you be low in iron? I can't maintain a normal iron level and it leaves me short of breath and I've noticed I take very shallow breaths sometimes. Worth checking it out.
Hopeful you find some answers. It's so frustrating to have symptoms and no answers. Hang in there and hopefully your bloodwork will give you some answers.😊
I have had similar issues. I even had a normal pulmonary function test, but still often feel like I’ve been running & struggle to catch my breath even with minimal activity. I hope you find some answers & relief!
I also suffered with shortness of breath and struggling to take a full breath for a long time, worse with exercise, lying down, hugging somebody, hot weather, when swallowing a drink. After 7 years of investigations, ruling out asthma alongside other conditions I got a diagnosis at the Royal Preston Hospital. Initially they said I had a vocal chord dysfunction after putting a camera down and encouraging my symptoms by knowing my first identifying triggers and a pattern of events. Following that they changed their minds to a breathing pattern disorder which was corrected within 6 months of being under a physiotherapist at the chest clinic. Felt like a wasted 6.5 years when they could have found that to begin with but all worth it now. I can finally do some of the simplest things which I'd struggled with for years. I was discharged from the clinic in June 2019 aged 27.
Thankyou for your in depth detail, I'm going to look both up its very upsetting about yours and mine time taken to identify issues. Took me 10 years or so to find out I've had deviated septum which requires OP so i feel this will help 50% of my issues. I feel a warmness in my throat after talking long periods of time so perhaps could VCD along with GERD.
I'm going to mention both to a doctor and see if will help me. Thanks again
I used to feel like I was going to stop breathing because when I took a breath in, I could only go so far and wasn't getting the full breath that I needed, so it would be multiple shallow breaths before I finally managed a full breath and then a sigh of relief. It felt like I had to swallow a lot and also had to clear my throat constantly. Heat made it 10 times worse. I used to feel like I was going dizzy too occasionally when I really struggled to get hold of that full breath. I loved the cold weather as the colder it was the easier I found it to breathe and I often had a fan pointing on me in bed to ease the struggle when I was laid down. I used to hold on to something and had to focus wholly on getting the full breath in but very often felt like I was going to stop breathing and learnt a technique myself of yawning which seemed to get the full breath quicker than multiple shallow breaths. Sorry for the essay just hope it helps you x
Also whenever I had a cold the symptoms were extra scary as they were much worse than normal day to day. The chest clinic physiotherapist literally retrained me on how to breathe correctly and like I say 6 months later I was discharged and have returned to my sports and other normal day to day life x
My current symptoms sound very similar to what you have described you had! I can never get a full breathe of air when I am walking around or when I try to exercise which leads me to yawn to get what I feel is enough, then it’s starts all over again and is a horrible cycle that never ever goes away. I’m miserable!
It’s been 1year with so many tests and no clinical answers except that I have a breathing pattern disorder.
I also get heart racing chest pains and palpitations so not sure if that’s also something you experienced with it?
I’d like to think it’s not my heart and is as simple as the breathing pattern disorder especially hearing that you resolved your issues!
I wasn’t offered breathing therapy or physio and some heart monitoring that was due has been cancelled due to the current covid 19 issue!
Is there any way during this time of quarantine you would be kind enough to list in as much detail as you can the exercises/physio that you did that helped you get over your breathing issue and how often you did them?
I know it’s a lot to ask but getting appointments or physio now at this time for this issue is not going to happen and I’m so so down with not being able to be active or get around.
Hi, thanks for replying after this virus has cleared i will be getting myself booked in to see physiotherapist. I presume my Mri next month will be cancelled as was meant to rule out any heart problems. But i guess will have to wait struggling currently just got myself 14 days off work for isolation. Drop me a message if you want to compare anything. I'm also thinking of looking at CPVT but yeah just need to wait.
Your situation sounds very similar to what I experienced just over a longer period of time, took years for a diagnosis. I occasionally had the heart racing and palpitations but no chest pains that I remember.
They also pointed out with me from the start that when I breathe in my shoulders moved up and I was breathing with my upper chest rather than using my diaphragm along with stopping me using my mouth for breathing at rest and to use my nose instead which is what they corrected during the physio. So the focus of the exercises is to stop the upper movement of the chest and shoulders and the mouth breathing and with these eliminated this should have a huge improvement on your symptoms.
I just found a random link with the exercises on for you as I don't have the original notes to hand. It sounds so simple and at first I thought oh yeah that won't work, but stick with it and progress steadily and you'll hopefully improve your symptoms very soon. Good luck! Let us know how you get on.
I have the symptoms you describe & also poor voice quality. I have received mixed diagnoses of spasmodic dysphonia or muscle tension dysphonia. During speech therapy, I realized that when I focus on breathing I can improve voice quality, so I was interested to hear that there is therapy for disordered breathing
Other than a bit of raspiness in my throat and having to clear it a lot and drink plenty of liquids to keep hydrated I haven't noticed anything else. I posted a link a few posts up with some exercises I had to correct the disordered breathing and I am much happier and healthier following the therapy and have now been discharged. Hope this helps
As your brother has been examined for Marfan and EDS, may I suggest you look into Ehlers-Danlos syndrome for yourself too if you haven't already. You can check the RCGP toolkit online which has some good information and a check list.
Hi all, just got bloods back low in folic acid. I've looked it up but i think its low due to lack of appetite/flu like symptoms for a week don't think will improve my symptoms but will see how it goes.
Have you asked your GP about Alpha 1 Syndrome? Its not widely known about in the UK, but there are specialists in some UK hospitals. If you have a family history of breathlessness symptoms, its worth asking for genetic testing. Most info online is from USA.
I’m sorry i can’t give you any info, I only know about the condition as i have a friend and several members of her family who have been diagnosed with this.
Hi all, just update after few days now of taking lansoprazole and folic acid as blood test indicating low on this still feeling just breathless. How do you all think about use of Revitive Aerosure Breathing Relief - on amazon anyone used or?
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i will mention it again and see if it can improve my breathing. 
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